Elmo will you be sent back to a neurologist? I am not really familiar with what a Physiatrist is as I haven’t heard the term before. Did the Physiatrist do the EMG and nerve conduction studies? Yes a lumbar puncture sounds a good plan and perhaps bloodwork for autoimmune ie. sensory motor panel from Athena Labs. Keep us posted please.
Laurel

Hey Laurel – a physiatrist is a specialist in physical rehabilitation. He plans for and sees that your “plan” is carried out and changed as needed for your best. My son is a third year intern a UC Davis, Sacramento, CA. He loves his work, always finding it challenging to have some understanding of what the patient is going thru. With his mom having GBS residuals for 16+ years I am a challenge to what he was taught in med school 😮

Thanks Judi. You must be busting with pride over your son!
Laurel

Hi Elmo. I’m new here but it seem that we are in the same boat. I’ve been having symptoms for 30 years now. Was dx’d with RRMS in 2010 ,and PN (moderate sensory /mild motor neuropathy). Then Mar. this year dx’d with lupus. Now seeing I’m seeing a new neuro. who is questioning my MS dx’s (still I have a dx’s of RRMS for the time being). I’m waiting on a referral for another brain,cervical,and t-spine mri w/wo contrast ,plus EMG. Neuro is thinking either vascultis or cipd or both.

All this back and forth ,changing their minds has to be driving you as crazy as its driving me. I’ve also been diagnosed with cervical radiculopathy,legally blind and IBD. But what really matters is that they get the diagnoses right so that we can get proper treatment. I hope you get your answers soon.

Hugs

I honestly think you need to push for that LP AND an MRI of your brain & spine with & w/o contrast.

I think you may have too many cooks in the kitchen, so to speak. Forgive me for not remembering but have you gone to Mayo? I think it might benefit you.

I hope you get some answers real soon!

Kelly

Hi Elmo, I’m going to Loma Linda here in California. Their doctors are really good. The Mayo clinic is about 3 hour from where ,it would be hard to get there. I’m still waiting on the Mri referral to get approved hoping that that doesn’t take to long. But as for the lp I did talk about that at my neuro appt. and she said that she is holding off on that until the mri’s and emg is done.
I’m the meantime between the waiting and this killer heat I going nuts.

You have been through so much, & have so much on your plate! So sorry about the side effects of the med. & the depression. The depression, I’m sure glad you found the problem! I’ve been praying for you every day & will continue to lift you up in prayer every day. Thanks for the update, please keep us posted.

You’re welcome Lori! Thank you for your prayers too!
Hugs, smitty

Lori I hope things continue to improve–now that you are off the Singulair. You sure have had a rough time. I just said a prayer for you. Lots of good thoughts being sent your way too.
Laurel

I have gone to Fairly Odd Mother’s website and her inspired photos are indeed stunning. Please treat yourself to a visit and see what she can do with a simple photograph and her talent ”’

FOM-you have been thru a lot. Amazing that prescribed medications can cause horrid unsuspecting side effects.Give the kitties a head rub for me.

Stacey

I am praying for you and your son. Its not easy dealing with issues when its your children.

I would gladly take Ryan’s illness and bear that cross for him but I can’t. Oh how I wish I could…

take care and God Bless

Rhonda

Stacey,

Good luck with your appointment. I guess it was today? or next week?

waterslides sound fun !! Hard climb up, fast ride down.

Why don’t you go up ONCE, and let him go up the rest of the times himself. It will make him feel grown up and in charge!! No need to explain, just tell him he can do it.

I am glad you are getting to do these things while you still can. I wish I did. I worked, worked, worked, and then I couldn’t work or do a lot of other things with the kids. I have always felt bad about that.

Now I can no longer drive and have to depend on my son (18) at home to drive me around. He is pretty good about it, but I am sure he would rather not have to do it. I hate having to ask. But CIDP changes things.

Take care and have fun this summer.

PS, Guys always fuss when they are putting up tents !!

Congratulations on taking good care of yourself. Hope you continue to get better.
Linda

BUT? Start keeping a short-hand type of list…noting the results…The neuro can use this to justify the need for more IVIG and that improvement is noted while on it.
Deal with two lists? One of the good things, one of the not so good. Both can be used with prudence by your docs…. Also, notes on the eye movement? such as…tho I hope not.. when it comes back and how it comes back [slowly? With a vengeance?] you get the drift. The shorter and simpler such a list is – the better.
Your neuro is at least responsive? In that you can text him. One time I’d called twice daily for a week to get a response to something that could have been critical.
Hoping your infusion is just what you needed!

Erin,

Lyrica and Neurontin are in the same class. They changed Neurontin makeup a little bit to re-market it as lyrica because the patent ran out. It is generic and can save you a bundle.

Being the same thing, the “wiped out” feeling you had should go away as you get adjusted to the dosage. I went through the same pricing problems and $$$ issues two years ago. No problems here. I take 2400 a day, have a generic copay, and am feeling much better all around.

I am not telling you what to do, or what to take, just sharing my solution to a similar problem. Please look at all your options before deciding. My issue was neuropathic, a seizure Rx is different.

Good luck,

Dick S

Jim,
I’m happy for you with your good news, what a relief it must give you.
Good luck with your disability .
Shirley

hey jim,
great news..keep us posted and good luck..tell wifey to enjoy the job.

Hi Jim,

It’s great to hear wonderful news!! Congrats to your wife on her new job and congrats to you for finally receiving a court date.

We’ll pray for a favorable outcome!!

Take care,

Tina

Hi Jim! I hope all goes well for you and your wife. Hope you get that disability. Will keep you in my prayers. May 2009 be a much better year for us all.
Linda H

Micheline

I am so sorry to hear of your diagnosis. I wish I could hug you right now. You are in my prayers and thoughts. Please try and stop by to say hi here even if you seek another support forum.

Hugs
Lori

Thank you for sharing your dx. Kevin and I will pray that you are able to be as strong as possible on this journey.
Dawn Kevies mom

Micheline
thank you for letting us know your dx. My thoughts are with you.

Even though I don’t know you, I’ve been reading your posts and I feel for you. wish I could give you a big hug.

Micheline,
Know that you and your family will be in my prayers.
Blessings
Shirley

I Just Prayed For You Before I Wrote This .i Dont Know What To Say To Make You Feel Better But I Will Pray For Your Complete Healing And Hope For The Best And The Best Is Doc Is Wrong.so Let God Take The Wheel Cause Hes Only One Who Can Pull Any Of Us Threw This.good Luck Remember Jesus Saves.jim In Indiana.

A few weeks ago, I Goggled Stephen Hawking because I had heard a quote about how much he appreciated life. He is probably the most famous person living with ALS. He has been living with it for about 45 years and still is working and enjoying life–with a lot of assistance, but, nevertheless, inspirational. Search out his official website on the web and read what he says about his illness. It will inspire you as it would any of us with neurologic illnesses and limitations in abilities. I pray for peace and that you also find a way to continue in life despite this diagnosis to appreciate each day and each person.
WithHope

Oh dear Micheline! I am so so sorry to hear your news. I will keep you in my prayers and do hope that their is some kind of new treatments that will help you get through this. But my deepest prayers will go out to you and pleased keep us posted on how you are doing. You are family here and we all care! Sending you some Cyber Flowers and several Hugs.
Linda H

I had reflexology many times on my feet! LOVED IT 😀

Unfortunately I found out that I have blocked arteries in my heart, my reflexologist won’t touch me. I guess it can affect the heart and arteries.

Rhonda

If you have CIDP then you will need to stay on treatment. You need an immuno modulator on a regular basis.

Call you neuro ASAP. The longer you wait the more your body is being attacked by the bad anti-bodies & the worse you will get. The worse you get the harder it will be to gain back what is lost.

If you are going to do IVIG treatments then you need a loading dose. Then you need to figure out what kind of maintenance you need. But when you have CIDP you can’t just stop the meds because you are doing better.

Good luck,
Kelly

Hi Linda! I am glad to see that you were getting better but sad that you may be getting problems again. Maybe you were over pushing yourself with the tap dancing and it caused another flare up! I hope it was just that and that you end up feeling better soon! Hope your neuro does have the answer and gets help soon! Hugs
Linda H

Hi Lindsay,
Glad things are going well for you. Try to keep a close eye on things just in case. Maybe once a week do the routine neuro assesment stuff so you can guage yourself. The walk on the heel is always a good test for us. Praying things keep going well for you,
Dawn Kevies mom

Dawn,

Would you go into a little more detail on what you do to self assess.

Thanks,

DonnaM

My prayers are with you, to day and everyday. Be strong, as strong as you can.
Dawn Kevies mom

Micheline, Hang in there, best wishes and prayers being sent your way.

Micheline
do you know what your protein level was from your lumbar puncture/spinal tap. If it was elevated then that is a sure sign of GBS and it could still be GBS without having an elevated protein level. Keep pushing until you get a definite diagnosis. YOu will be in our prayers.

I had no results with IVIG which was started in Nov 2007 and ended in March 2008 when they switched me to Plasmaphresis.
Had the fifth treatment of phresis last week and have noticed some improvement. I’m now on hold for phresis until i start relapsing and then md will re-order it.
I was also started on Prednisone 80 mg a day in Nov 2007 and just started to reduced the dose to 60 mg aday alternate with 40 mg a day. MD contines to state I have to remain on Prednsione, he will get me to the lowest dose possible.
I started Cellcept 2000 mg aday in Nov 2007
My husband had to build new stairs to get me in the house. Much lower and wider steps for the walker to fit on. My feet will not lift up very far. Am weak and was falling a lot.
I’m dependent on a four wheeled walker with a seat.
Today was told I’m not severe enough yet to qualify for an electric chair under Medi-Care laws.
Good Luck to you and hope they find an effective treatment soon.

Hi Kenneth,

I’m not sure if I’m clear how much IVIG you are getting. But I know some of us, myself included, get it more frequently than once a month. I started monthly and it just didn’t hold and am now on an every other week (two days in a row of 40 Gms each day) and I get Solumedrol. I also started Cellcept last month. I feel great this week. This is about the best I have felt in a long time. I am not perfect by any means, but my gait is better, my energy level is up, my typing is better, etc. I wonder if maybe you need it a little more frequent? If not, PP may be an option for you and other’s that didn’t respond to IVIG. Good luck to you….. And Beth I’m glad you are seeing some improvement as well.

We need to know how much IVIG you are getting – in grams. We can’t tell how much it is by the length of time the infusion lasts. The time varies by person & not by amount. For example, my daughter (6 yrs old) gets 20 grams & her infusion lasts 2 hours 45 minutes, but she goes at a faster rate than others.

The average dose of IVIG is prescribed at 2 grams per kilogram for the loading dose, which is usually given over 4-5 days. Meaning every day you get the same amount for 4-5 days. Then the average maintenance dose is 1 gram per kilogram.

We’ve found that 2 grams per kilogram hold Emily better than just 1 gram for a maintenance dose, so that’s what she gets. Apparently more dr’s are coming on board with accepting that as a reasonable dose as well.

Treating CIDP is an art form. It takes A LOT of tweaking & waiting & watching.

You should talk to your dr about how much IVIG you received at every infusion & see if the dosage can be changed & see if you can get it more frequently. The full-life (meaning how long IVIG stays in the body) is about 42 days, so half-life is about 20-21 days. Some people need to start off getting infusions every 2-3 weeks (or sooner) before the IVIG starts losing it’s potency to see any real improvement.

I’m not a fan of Prednisone, so I’m just not going to comment on that, LOL. The only advice I’ll give on that is that if you haven’t seen any improvements while on it, then it’s not working for you either & you should be weaned off. No sense in putting your body through that if it’s not doing anything for ya.

As far as other treatments, some people do have success with plasmapheresis. Others go on to Cellcept, Imuran and Methotrexate with or without IVIG.

Good luck,
Kelly

Thanks Kelly for clarifying the amount needed ongoing….

I was just wondering if your neuro has ever said what type of CIDP that you have. There are two kinds of CIDP: the relapsing/remitting, which tends to respond well to IVIG & Plasma Exchange, or the progressive, which tends to come on at a slower pace, but tends to be less responsive to IVIG or PE period.
I have the progressive form & was told that very early on when neither treatment did anything for me. About steroids (this includes solumedrol also), if they don’t work almost immediately, they probably won’t work at all. 100 mg daily seems to me to be an extremely large dosage, & if it isn’t doing anything for you, I would get off of them ASAP, as they can do a lot of damage, often more quickly than one realizes.
Pam

[COLOR=black]Hello Deem,[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]I also am doing a combination therapy. In my case, it is plasmapheresis, prednisone (but not a low dose), and azathioprine. I am not wild about any of these therapies, but without them, I know from experience that I would be a quadriplegic. Given that choice, I’ll deal with the future consequences when they come. [/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]Usually, when immunosuppressants are prescribed in conjunction with prednisone, it is with the idea that one will need less prednisone for the same result. One reason your neurologist might have started you on azathioprine now is that it takes 8 to 12 months to start to have much effect. In other words, you will have figured out how well you tolerate IVIg and what schedule you are likely to need before the azathioprine really has much effect on your immune system.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]As you have noticed, changing the prednisone dose and gauging its effects is a long process. I am 8 months into my current regimen and we are still adjusting the parameters. I hope to have the parameters dialed in by the end of the year, but I would be surprised it happens much before then. [/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]As to the side effects, all you can do is be vigilant about them. For prednisone, have your neurologist prescribe famatodine (Pepcid), to prevent excess stomach acid production, and Fosamax, to help prevent osteoporosis. If you have risk factors for diabetes, have your neurologist prescribe a blood glucose monitor. Use a blood pressure monitor. Have a bone density scan every now and then. For azathioprine, stay out of the sun and be vigilant about checking for changes in your skin. [Skin cancer is the most common cancer that azathioprine causes.] If a particular type of cancer is common in your family, make sure you watch for it.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]Godspeed in getting your doses and schedules dialed in.[/COLOR]
[COLOR=black]MarkEns[/COLOR]
[SIZE=3][FONT=Times New Roman] [/FONT][/SIZE]

Hi Deem,
Just a cautionary note with the Imuran. My husband started Imuran in Dec.2007, and had a bad reaction within about 12-13 days of starting it. He began to experience chills in his back on day 10 with no fever, on days 11 and 12 he complained again of the chills in his back and no elevated fever as we kept checking it. On day 13 he began spiking a temperature and by the time we got to the hospital it was 104 and they said he had sepsis. He was in hospital for 4 or 5 days treated with antibiotics. His blood work was quite wonky with elevated liver enzymes, low hematacrit, and low red blood cells. It appears that the Imuran began causing some bone marrow problems. It took him nearly two months to recover from the 2 weeks of Imuran. It seems that most people tolerate Imuran quite well, but there are those like my husband that do not. Pay careful attention if you start to get an elevated temperature and if you do go to the hospital and explain that you are on an immunosuppressant. When we went to the emergency they whipped my husband in so fast his head spun when he explained that he was on Imuran and they found his temp to be 104.
Laurel

[QUOTE=deem]Hello, thanks for the advice guys. Mark, I understand what you are saying – about it taking a long time to see if the Imuran will work. When he mentioned it before, I had figured he would prescribe it if I didn’t respond to prednisone and IVIG. I do understand that I will be tapering down to a lower dose of prednisone and the Imuran may be the key to allow that to happen. I had hoped that I would be one of those who would need IVIG and nothing else. He said in his experience many people need a combination therapy. I guess I fit the profile of those folks. My disease was pretty aggressive. Maybe it is not worth risking a relapse?

Laurel, he wants me to have blood work every 2 weeks to monitor things. I am sorry your hubby had a reaction. What is his treatment plan now? Is he improving?[/QUOTE]
Hi Deem,
He is only on IVIG monthly right now. He gets 1 Gram per kilo of his weight monthly. The neurologist wants him on Cellcept starting in April. Our game plan is to refuse the Cellcept because of similar side effects as the Imuran, and not enough long term studies on the efficacy of either of those drugs. She is trying to decrease the IVIG due to its cost. So if pushed against the wall, my husband will agree to pulse steroids. He seems to be improving with just the IVIG thus far. There is at least 50 years of steroids being used and the side effects are all well recognized and reported. It is our belief that the use of Imuran and Cellcept haven’t had enough clinical trials for us to feel comfortable with going that route. My husband says he can understand organ transplant recipients taking those drugs as it means staying alive for them, but with his CIDP and his experience with Imuran he feels the treatment is potentially worse than the disease. His experience with Imuran was very bad. And that has coloured our views on Imuran and Cellcept. But from all my reading, it seems that Imuran and Cellcept only work in about 20% of the people taking it so that seems low success for such high risk.
Laurel

Hi Deem,
I forgot to say that my husband has improved from the time he was diagnosed in July 2007. This has been on IVIG alone. He was only on Imuran for the two weeks in December. After his high temp. etc. in December he deteriorated back to square one almost. He has an atrophied right hand, and prior to IVIG he could not hold a cup or eating utensils. After starting IVIG in September 2007, within one week he could hold a cup and use utensils–but the atrophy is going to be permanent likely. He also had foot drop of the right foot prior to the IVIG. After the incident with Imuran, he lost the gains he had made very abruptly when he spiked the fever. It took two sessions of IVIG to get back to where he was prior to taking the Imuran. In April he will have his EMG and nerve conduction tests repeated, and if he hasn’t made considerable improvement that is measureable then the neurologist will be pushing him to add another drug to his regime. He refused to take Prednisone due to the side effects and that was when he was put on Imuran. He says Prednisone looks good to him now .
Laurel

Hi Deem,
yeah i know it seems a bit of a bugger needing all the combination treatments etc, bet we’d all love to be in the category i guess of just needing igiv. I am also on combination therapy, ivig twice a week, pulsed methlypred 500mg iv once a week and azathiaprine 50mg twice daily. I was struck down with quick onset Cidp, and diagnoised almost straight way june 07. unfortunately i experienced life as a quadraplegic also, as the ivig, and then ivig plus oral pred didnt hold me. It is very scary losing all control, and watching the paralysis setting in by the hour! I started the large dose iv pred and azathiaprine at the same time as well as another full loading round of ivig (over 5 days) and the progress seemed very slow but it did happen and around week 6 really started making some decent progress. Have been on the above 3 combination for 5 months, would love to reduce off things, we tried reducing ivig to once a week but again the weakness started to take hold, am now week 4 on being back on twice weekly ivig and am making good progress!! Am keen to here how you get on, as for the side effects if your bloods are being monitored and you are sensible with sun etc as MarkEns says you cant dwell on it too much. My Liver functions were high for first 6 weeks but have settled back to within normal again now. You are probably well aware of your own body signals by now so no mucking around if you feel like you’re getting the flu etc. Get in to your doc straight away.
All the best and heres to you starting to feel some good effects of all those drugs.!!!!!

Funny you should ask as am just home from a session at the gym!. have thrown in physio as just so badly want to get back to normal etc. (was doing regular triathlons before this hit me).
Mobility now is pretty great really, am not back to normal, reakon roughly about 85% now. am totally independant with walking, can run a very small block, and can bike ride 10 mins on interval training at the gym (on no resistance level tho.) but have only been back at gym for 4 sessions. have very high hopes, am planning on skiing in 6 mths so that is the aim at the gym, to get legs reliable and strong etc. at present am still having to be cautious going down lots of steps etc, or on uneven ground, am not up to the speed of my children but i can manage most things myself just a wee bit slower than the kids, thats all.
Re Imuran, i havent had any noticeable effects yet other than high liver function which has now resolved (took about 3 mths to settle).
Glad things ticking along in right direction for you. Keep us posted.

I’m on monthly IVIG. Prednisone 60 alternate with 50 mg daily, CellCept 2000mg daily and Arava 20 mg daily.
So far, none have improved me and they are talking about adding plamaphresis to the mix.
Hope they meds work for you soon.

Hi Sonja!

Glad to hear things are getting a little better. Keep up the positive attitude!
Dawn Kevies mom

Hi Sonja,
I did read many times about the link to chicken (undercooked) It is related to the bacteria from the raw chicken. I have never heard of diet pop!
Regarding PT, I would not worry to much on what has already happened, I kind of question what the doc said as well, you know the saying here, rest rest rest. Most on the sight usually tell new comers to back off on the pt. In any event, best wishes for good days ahead.
Dawn

Hi Sonja, learned something from you today 🙂 I didn’t know what physiotherapy was, googled it and found …. The terms physical therapy and physiotherapy are synonymous.
Stay positive and best wishes!

My neuro warned me about sodas in general, especially the dark colored ones. The effects can mimic MS – so similar to us.

This neuro also told me there was a psychological component to my residuals. I relate this to your doc telling you it is up to you. We do have to make a choice and act upon it to get a little better. I think no matter what, we are going to feel the residuals a lot, but I suppose it can get better.

One thing I know has helped me in the past few months is adding a strong multi vitamin to my diet – we really need extra vitamin Bs.

Big hugs to ya Sonja!

I wonder if the diet pop could be because of aspartame or other artificial sweetners? I avoid them like the plague…as if corn syrup is much better but at least it isnt chemically and artificially made.

A comment on b vitamins….be careful! Too much B can cause nerve damage. I was drinking several Vitamin waters a day (loads of b) plus taking a b complex. I felt worse than not taking them. I stopped drinking so much of hte water and now only take a multi every other day. Most of what we eat and drink is fortified within an inch of its life so we are getting vitamins and minerals we didnt even realize. Im not saying dont take it, just keep in mind that there is a toxicity level.

Smiley,

I remember when I first moved to the States and spoke about going to physio, all I got were confused, blank stares. 😮 I learned to change my vocab quite a bit 😉 . Physiotherapy – instead of Physical therapy is used in the UK, Austrailia, New Zealand and South Africa, and it seems like parts (maybe more) of Canada. Its so funny to see that we are we all speak English, yet the words are often so different. hooter = horn, dustbin = trash can, boot = trunk, plaster = bandaid, fringe = bang (related to hair) I also use the word robot for traffic light, not sure if only south africans use that one :confused: … and there are many more – and after growing up with all those differences, it is still difficult to remember the correct word a great deal of the time:o, obviously my fuzzy brain doesnt help much.

I want to comment on the under cooked chicken that you refer to. When I had GBS 25 years ago they attributed it to a gastro infection but I have since done some research and have discovered that food poisoning can cause GBS. There is one food poisoning (and for the life of me I have a drawn a blank on it’s name!!) that is the culprit and it comes from eating or handling raw chicken, as well as from well water. I live on a farm in rural Canada and at the time I got GBS I was raising chickens for meat so was handling raw chicken. We also drink well water. The symptoms I had just prior to getting GBS are exactly those of the food poisoning. When I had plasma pharesis, the one thing that was unusual and caused the dr’s concern was that the removed plasma was tarrish. In other words, a greenish black. It was gross. This also leads me to believe I had the food poisoning. I am curious to know if anyone else has ever had a similar experience with the plasma being so discolored? I look forward to hearing from you.

Janet

I believe my pancrius has hurt on and off for about two weeks.
Is this normal with GBS?

[QUOTE=sfjeldstrom]

I have questions though for those out there. Some nurses are starting to say that GBS is now starting to be linked with eating chicken that wasn’t fully cooked and also diet pops. Have anyone else heard about this as possible causes for GBS. Just wanting to know. They said the diet pops cause was in a study and the chicken connection they heard through a workshop on disease control. It could be possible about the chicken because I definatly had chicken before GBS whether it was fully cooked or not I don’t know.

Sonja[/QUOTE]

Well Im one of those GBS that got camfolybacteria of chicken, it was not well cooked and that got me down under, it is link between camfolybacterya and GBS that is a fact that I have read about.

Sonja, way to go. Sounds like you showed them! Knowing you could stand and actually doing has to feel good, both mentally and physically. Keep up the good work.

good to hear you’re headed down the road to recovery. I am just starting down the gbs road(i might still be ascending). stay positive you are all a light in my proverbial tunnel. i wish you the best with the physio. the greatest victories have all followed the hardest of roads.

Wow Sonja, I still say that you are an amazing person! You are like the Energizer Bunny, still going, going, etc 😀 I am so very proud of you. And to think that you got a roommate with GBS. Would it be OK for you to share some info about her ~ age, when diagnosed, etc. And please tell her hi from the GBS Family. Hugs to you both!

I was just in Edmonton and would have loved to meet you! Darn! I am from southern Saskatchewan (Yorkotn-Melville area). Feel free to pm me. We can chat if you like.

Most chicken and chicken eggs have Salmonella in and on them. This isn’t a guess. Use paper towels with bleach to wipe down any counter-top or sink or utensil touching raw chicken and use the same to turn off the sink water tap because you probably touched it. Clean hands and under each nail the same way. It’s really hard to get under fake nails.

Don’t put other food down, like salads, where chicken just touched.

Cleaning with sponges just provides a nifty hiding and growing place for Salmonella so pour a little dilute bleach on them, squeeze a little, and let them sit a while before rinsing out. Heck, throw them in the laundry with your bleached items or the garbage.

Salmonella is really common in well water especially after rain carries the Salmonella from farm animals, like chickens, into the ground water and into your well. Also, septic tanks can overflow into the same ground water where your well is. Wow did my sister’s family get sick out at the farm.

I am curious about the different mention of chickens and GBS in general because the viruses for making many live virus vaccines are grown in chicken eggs. The viruses have to have a living thing to multiply in and the simple and cheapest are chicken eggs.

I have only read on this site a day or two but see the connection of certain vaccines with the GBS onset, like 1976 and the swine flu vaccine. I believe that vaccine was grown in eggs too.

Luckily, most people get over mild Salmonella infections quickly but kids don’t do quite as well as fast. Usually it’s not treated with anitbiotics unless there’s no improvement because they can cause the Salmonella to go into hiding in the gall bladder, for years, only to come out at certain times, making you a “carrier”. I wonder if it hides and does something else we don’t know about.

Just my opinion. Check with a doctor. But that connection by Elizabeth today about her dad and aunt (not biologically related to dad?) both having GBS and Camphylobacter is worth doing a little research since it is a GI bacterial infection also. Hmmm.

I hope I am posting this right.

It is terrible that the physio. people are shorting you on your time and PT.

May I suggest something that might work but sounds crazy?

I’m retired, medical, and an admitted softy, but even a hardened PT can be
“softened” up.

Could I talk you into crying? Really. When one of those PT guys answers your sad question (make it really sound sad), I want you to put your knuckles to your eyes and make a whimpering sound. Real tears are a bonus but not required.

Hey, it worked with me being the caregiver as well as receiver.

Look at it this way. Why the heck should YOU suffer from someone else’s rude and inhumane behavior? If you can’t think of it as helping yourself, think of how many other weaker patients you may be helping by bringing these troglodites down to the level of humiliation they deserve.

If they are ignoring you, it is because they feel they can get away with it. No, I am not blaming the victim, I am just saying that some of the medical folks I dealt with knew they could short some patients and not others. The “not others” were either forceful, or rich, or cute, or, most powerfully–able to cry on cue.

If a PT or doctor or RN thinks you are going to cry, it can be one of the most motivating actions possible. Being mean brings out their hackles. Crying just makes them ashamed (and one told me it reminded him of what his real job was all about–he couldn’t sleep all night til coming back to work the next day and making up for forgeting why he studied med. in the first place).

Just a suggestion. I’m really not nuts.

Sonja, I’m sorry you are going through soo much, I am sending you Big Hugs. You need to have a way of dealing with your emotions, for your mental health. If it were me, I would just let it out on the nurses and then apologize, but only to a small extent. It is only human to deal with all the problems you are facing in an emotional way at times. As for pt and your brace I would take the lead and tell them what you want to accomplish and if they don’t like it than tuff on them. Demand the brace if you think it will enable you to move better than do it for you. Take Care.

Sonja, this is an article from the Summer of 1998 archives, hope everyone will forgive me for posting the whole thing but am not sure how to direct you to the archives.
Perhaps you could show it to you Doctor?

Pain in Guillain-Barré Syndrome
Gareth Parry, MD Department of Neurology
University of Minnesota Minneapolis

Guillain-Barré Syndrome (GBS) is a disorder in which the dramatic nature of the paralysis overshadows all other features. Pain is not given much attention but is an integral part of the disease; in some studies, pain has been reported in more than 80% of patients. It has been my experience that pain is frequently underappreciated and underdressed by physicians. At one extreme, I have talked to patients who have been told that they cannot have pain because pain does not occur in GBS. Pain may occur during the acute phase of the illness and may even predate the onset of the weakness or it may occur during recovery and rehabilitation. Because of space limitations, I will not discuss the emotional pain but close attention to anxiety and depression in both patients and their loved ones is a critical part of overall management of GBS. Nor will I discuss the pain which may occur during the rehabilitation process.

Pain during the acute chase of the illness:
Pain may be the first symptom of GBS or may develop together with the weakness. It typically is located in the region of the spine and the upper parts of the limbs. For example, there may be pain between the shoulder blades, in the low back and buttocks or around the hips and shoulders. The pain is often difficult to describe but tends to have an aching or cramping quality. There may be stabs of pain with movement. It is not at one clearly localized point but is somewhat diffused and seems to be deep in the body rather than on the surface. It is usually no more than a nuisance but may be severe, particularly in patients with rapidly progressive and severe paralysis. In such patients, who may be on a ventilator and unable to communicate easily, it is very important to ask specifically if pain is precut. This is the most neglected type of pain seen in GBS since the doctors are concentrating on the life-threatening aspects of the disease. However, when severe it may cause dangerous heart irregularities and changes in blood pressure and aggressive treatment with strong analgesics such as morphine may be needed. Care must be taken with the use of these narcotics in patients with reduced respiratory function since they may cause respiratory failure. If the patient is already on a ventilator there is little cause for concern. This pain may resolve rapidly during treatment with plasmapheresis. It also improves with steroids such as prednisone. It is also important to realize that immobility causes pain which can be alleviated by frequent turning and passive movement of paralyzed limbs so experienced high quality nursing is very important.

Pain during recovery:
As recovery from paralysis progresses, the pain discussed above usually subsides but may be replaced by a different type of pain. This new pain tends to be localized in the lower part of the limbs, particularly in the feet. The pain is less often of the aching/cramping quality and is more burning, stabbing or shooting. It may be associated with marked sensitivity to touch so that even the light touch of the bed sheets is perceived as pain. It is also exacerbated by exercise and weight-bearing so it may interfere with rehabilitation. This is called “neuropathic pain” and it responds rather poorly to narcotic analgesics although they should still be used in severe cases. Best responses are seen with certain antidepressant drugs such as amitriptyline (Elavil) and nortriptyline (Pamelor) or with anticonvulsant drugs like gabapentin (Neurontin) and carbamazepine (Tegretol). High doses are usually necessary and response may not be immediate. In my experience, the most common cause of failure of these drugs is that the dose is not high enough and is not used for long enough. Most patients will experience side effects if the drugs are used in sufficient doses to relieve pain but the benefit should outweigh those side effects. Another problem is patient expectations; treatment is expected to reduce the pain but will seldom abolish it. If a patient is expecting to be pain free and there is only a 50% reduction in pain intensity that will be regarded as a treatment failure and yet that is about the best that can be expected. Nontraditional treatments such as acupuncture may also help. Neuropathic pain also subsides with time but may persist for months or years and occasionally some pain may persist permanently.

In summary pain of some degree occurs in most patients suffering from GBS and may occur at any stage of the illness. It is frequently ignored and usually is underdressed. Fortunately, in most patients it is mild and, even when severe, it usually improves spontaneously or with treatment.

[FONT=”Arial”][SIZE=”3″]Sonja, am going to try to paste the ‘address’ for another article that might be of interest to you.

[url][B][COLOR=”black”][COLOR=”Blue”]http://www.gbs-cidp.org/newsletters/spring00disabilityafter.htm[/COLOR][/COLOR][/B][/url]

My doctors felt that pain was as important to address as the symptoms, and ignoring it (or trying to) would hold me back during recovery. While in hospital i was on a patient controlled morphine pump for a week, then on 60mg of 12 hour sustained release Oxycontin, am now down to 10 mg and am suffering no ill effects. I also take Gabapentin (Neurontin) and Flexoral when needed for spasms.
Without the Neurontin the pain is really intolerable, though it’s not severe, it is somehow debilitating none the less.
Hope this helps.

P.S. Don’t know if you are computer savvy or not, but if you just place your cursor next to the above link and click and drag to highlight it, then right click for “Copy” or “Cut” depending on your system.
Then right click on the location bar in your browser and Click “Paste”
Hope i’ve explained this adequately.
Best wishes [/SIZE][/FONT]

Oh Sonja~girl. You are amazing with how you continue to triumph in spite of the odds!! Do you have a family member or friend that could be your advocate? A “third party” might be able to facilitate some healthy change for you. Are you able to print off some of the responses you’ve had here and give them to your doc and pt? If I were “there” I’d do it for you but since I’m “here” I’ll just keep cheering you on 😀 Hugs to you.

okay, im way out of the loop here, as this is the first time ive read this thread. so, forgive me if i mention something that has already been discussed.

not sure where you are right now, but one thing you can do is [B]ask the doc [/B]to write very specific orders for physical therapy, occupational therapy, etc., but also for the nursing staff. if doc writes specifically, “Patient is to ambulate in hall with assistance (or cane, walker, etc.) every 2 hours while awake”, then the nursing staff is legally obligated to do exactly that, unless there is an insanely good reason not to. If you are unable to walk, then he can write, “Patient is to be assisted to sit in chair for 15 minutes every 2 hours, while awake”. The physical therapy order he’s written may be as general as, “PT”. ask him to write, “Physical Therapy to do ______ with patient every ______ hours dialy”. overexertion can cause some patients further harm, though, so ask doc about that, too.

I am a nurse and i have seen these very specific types of orders written many times, especially if the doc is worried about strength, range of motion, blood clots, pneumonia, skin breakdown, etc. staying in bed dramatically increases complications with all of those things, and doctors and hospital administration will do backflips to prevent those kind of complications, and will usually do anything to make those kinds of situations better.

You can also ask him for little things like an order for a heating pad, ice packs, an air mattress, a recliner at your bedside, etc. to help with your pain and skin breakdown. Maybe he can write an order for whirlpool therapy or PT that includes a swimming pool.

i had to go off all medications and the pain was absolutely horrific, so i had to get creative. i would fall asleep a heating pad and 5 pillows tucked all around me. when woke up, id move around a tiny bit, and then go back to my heating pad. then, id use my massage cushion. after that, id get in the pool and rest in an inflatable chair with a high back and arms on it, rather than one of those flat lounge rafts. that worked good for me because i was too weak to stand or walk in the pool. the water felt like a cushion all over my body and took the strain off all of my muscles and joints, which helped tremendously. after that, id go take an epsom salt bath or shower. it was my daily ritual that got me thru some really painful days. if you have skin breakdown, though, ask doc about the salt first.

i’ve read this week about the growing popularity of therapeutic epsom salt pools. they are ordered for people with chronic pain and depression and are protected from light and sound. theyve done studies that show wonderful results.

Sonja, I’m Praying for you Hun. I hope you can get some kind of treatment and soon. They should be taking better care of you. Please try to keep in touch, any way you can. Big Hugs!!:)

Sonya, wish I were in Edmonton. May get there soon so will if I do, I will look you up. In the meantime, take care and keep demanding that your needs be met.

Sonja,

I want to tell you to find a different hospital! This place does not sound like a good place to be. I remember one of the hospitals I was in. I always said if you wanted to die that would be the place to go, because sure as shooting the care would kill you. Is there a chance you could get transferred to a different facility? Do you have family close by that could advocate on your behalf?

As to the movement….Awesome. It feels good when you finally see something occuring and have a sense that things/feelings are returning.

Take care and keep us posted.

Oh Stacey,
I am so sorry for all that you are going through! Soon, God has to give youa break. I understand what you mean about your little guy keeping you going, I feel the same way. Good luck with the breast exam. Last year I too had a scare, turned out to be nothing. It is probably good to have a baseline at an early age with your mothers history. I am confidant that things are going to look up for you, sooner rather than later. I will pray for that!
Love,
Dawn

Dear Stacey, Please let us know how your exam went. It just has to be a scare, you are handling so much right now.
Prayers your Mom will start doing better soon. Watch those falls, broken bones come easily for us old girls.
Your Nebraska Pal, Regina

oh Stacey,
I am so so sorry. I hope it helps you to at least check in here and see that we all care so much and are here for you. If there is anything we can do please let us know. I will be thinking of you as always.
Linda

You”re such a strong, amazing woman! You handle so much – I’m sorry for your overwhelming troubles right now. You’re in my prayers and I know everyone on this forum is out there supporting you right now.

Peace, cathy

My thoughts and prayers are with you, your Mom and your family. It is just so much to handle. I hope you can find peace.

Ohhh Stacey, I’m soo sorry to hear all that bad news. You and Your Family are in My Thoughts and Prayers. Please make sure You take the time to take care of yourself also. I wish I lived close to You to help, just know Your Family is Here for You! Big Hugs!

Stacey,
Oh do I know all to well what you are going through and it is not easy. As you know, my father had lung cancer and I lost him in 2005. If you can, keep your mom in hospice at a facility or hospital as opposed to doing it at home. You will get much more support and will be able to focus on just being with her and comforting her. Also, don’t be afraid to let them use Morphine for her comfort. It is really a good thing to keep her out of pain. She will still hear you even if she looks out of it. I am sorry you have to go through this. There is no greater pain than losing someone you love. If you need anything or have any questions feel free to e-mail. I am here for you. I am praying for you and your mom and family.
Much love,
Linda

Can’t your dr just write a new script & it will cancel out the other one. I would call the dr to see what he can do before subjecting yourself to taking all of those pills. I worry that with having to take so many of them that it’s easy to accidentally miscount or overdose.

I think a call to your dr ASAP is in order for this one.

Good luck,
Kelly

WOOOHOOO!!! Keep Up The Good Work!!!!:D

I am so happy you are doing so well. I am hoping for an early Christmas present too, hopefully I will get back to work around the 15th of Dec. (after being off since Aril of this year).
MJ

Hi Emily,
Wow, you have done so well! I hope you continue to improve. It sounds like you have been having a great time this past summer. I feel tired, just reading what you have been up to!
You have such a positive attitude towards life! 🙂
Best wishes,
Kazza – CIDP

EMILY what a great update! Congratulations! Just reading your story has given me so much to look forward to. I have only been in this for 23 months and can do alot of things but you are doing the things that I wish I could do. Well maybe not all of those things, but the walking is my main goal now! The best report we have got back in a few weeks. I hope everyone has a chance to read your story! Thanks for sharing! You make me work harder and reminded me not to give up! 😎

thank you for sharing your story. it has given me hope.
mj

Emily,

I am so happy for you that you got to enjoy your summer, you deserve it.

Jerimy

Hi Emily,

It’s so great to hear that you’ve been able to do so many things! Given that I’m just two or three years younger than you, I find that all incredibly inspirational. Thank you for sharing; it gives me some hope!

– Dana

Hi Emily,
Boy, you sure did do tons this summer! I am so happy for you!! I wish you continued improvement and lots of Fall fun!! Winter! Spring! And Summer again!!!
Dawn Kevies mom 😮

Dear Jan, Sometimes the bad just never seems to end:( . I sorry to hear about your sister and it is good that you had that time together last year. Praying for you on you next rounds of chemo, I hope the IVIg gives you a little break from the fatigue on your ‘week off’.

I was actually treated with cytoxan for my CIDP & it did put it into remission back in 2003. I was put on 1140 mg infused 5 times in 10 days & then 1800 mg once a month for 8 more months. I don’t know the dosage you are getting, but it could be enough to help stop or at least slow down the progression of your CIDP. Anyways, good luck with your cancer treatment, I am so sorry you are having to go through this in addition to the CIDP.

I am also so sorry to hear about your sister, how difficult that must be. I only have one sister & I can’t imagine losing her. She just turned 60, but I still think of her as being so young. She does not live close to me, but we talk on the phone almost every day. I wish you all the best in your recovery…
Pam

Oh Jan ~ I am truly sorry that you have more issues to be concerned with. Life can be rather daunting, eh? And, I can’t imagine what it feels like to lose a sister, one who has cared so dearly for you . . . Please know that you are in my prayer thoughts and I’m sending hugs 🙂

Jan,

You have got more than you need right now. I hope and pray that things work out for you.

Remember that CIDP seems to get a boost when stress is added to the picture. Stress won’t cause CIDP, but it seems to make it worse. Find someone who can elp take the load off, so you can get some much needed rest. You have so much on your plate right now, let someone else carry some of the load for you.

Take care of yourself. You can get through this.

Dick S

Jan, I’m soo sorry to hear about your Sister. I have one, younger, who has been to visit during my events-great times were had in the hospital-great for recovery. You now have a Great Guardian Angel looking over you and there for you during All your hard times. Look on the brightside Jan, maybe your chemo treatments will put your cidp in remission or even wipe it out;) . You’re in my Thoughts and Prayers. Big Hugs!

DEar Jan,
I am so sorry about the loss of your sister, it is good that you had quality time with her last year. Regarding your treatment, as Pam mentioned the drug you are taking for your cancer is used with cidp. Maybe with the help of God it could take care of two problems at once. That would be such a miracle. I am praying for you, as I too believe prayers are heard and sometimes answered if God sees it in his plan.

Dawn Kevies mom:o

Hey Jan,
So glad to hear from you but so very sorry to hear about your loss. I am thinking of you often.
Linda

Hi Jan! I am so happy for you, it sounds like you are finally catching a break. I had a feeling (my earlier post on your thread) that God would make sure and take care of both problems.

Kevie and I will pray that your surgery goes smoothly as well. Regarding your hair, at least you don’t have to waste all that time fixing it in the morning!!!!

Have a great day tommorrow and be strong!
Dawn Kevies mom

Jan, Bald is Beautiful-just think how you will look when it is able to all grow back-have fun trying different hair dos!:) Glad to hear things are going well for you, you deserve it Hun! That would be Awesome if it takes out the CIDP also!:cool: Keep Up Your Wonderful Attitude! Take Care.

What a bad/good roller coaster ride?
Just good to hear they’ve found some sort of ‘balance’ to each ‘therapy’ I guess?
I was super lucky to skip the ‘chemo’ and go straight to the AI’s [chemos by another name] and I know what all it can do to your mind and body! The best thing is to straight out CHILL out and take things as they come…when your INTERNAL self says SOMETHING isn’t ‘right’ speak up, and very loudly… You and only you know or have a clue as to the what-alls are going on. My docs’ now that I have good attenentive ones, do not IGNORE my concerns…I’ve been right 3 of 4 so far..and honestly I don’t want to be right anymore?
BUT getting things RIGHT ASAP has kept a lot of issues from getting worse. Who needs compounding issues on other issues? Nuff already.
Go forth and be productively, politely assertive! Hope you get results and fast!

You are such a wonderful trooper. It sucks so bad losing losing a family member. I don’t know you story, but I feel for you. I lost my only brother and my dad within the last three years. I miss them both so much. They were so close to each other,too. They were like Abbot & Costello, so funny. I’ m sure you have a lot of good memories about your sister too. Keep those memories close to your heart. It helps. A Lot. My prayers are with you.

Jan, That is Good News! Can’t wait to hear the chemo worked on your other issues as well! pm Liz about the picture posting business, she can explain it better then I can. Keep up the Goods!:) Hugs!

Jan,

I am so happy for you ! It’s always a relief to hear some good news. I’m glad you are feeling good and doing so well ! My mom had a mastecomy and the chemo they did afterward was a monster. She lost her hair after the first round but when it was over and started coming back…she looked so cute. She was cute bald…as I’m sure you are, too. But, her hair came back silver and curly and she looked so good. Cancer is a very tough road without CIDP and I admire your will and your fight. Congrats on the cane…you go girl !

Wishing you continued improvement…
Stacey

Jan,
AWESOME NEWS! I am so glad things are going so GREAT! Your determination is amazing! Keep up the good work.
Dawn Kevies mom

I cannot believe the nurse is asking why he has so much secretion! He has just come off the vent, everywhere, including his throat, mouth, lungs etc are very very weak and its extremely difficult to swallow still. As a result he will be drooling and it will most probably be difficult for him to ‘keep up’ with his spit (dont quite know how else to say it).

I cant remember if they are giving him PT or OT. Also the physical therapist still needs to be clearing his lungs – where she ‘smacks’ the side of his abdomen where his lungs are (on each side) to get rid of the mucus as he is not strong enough to get out – If the moisture is not removed this can be the cause of pneumonea.

Erin,

I hope that he continues to improve. Im not sure wether you know, but, sometimes a spinal tap will give a false negative reading, and does not necessarily mean that the protien is low.

Hi Erin,

Sorry to hear about Corey, but glad he has a diagnosis. What types of medication did they put him on when he was sent home. Did they do IVIG or Pheresis? Anyway please keep us posted, let us know if we can help. Take care and please send him my best also.

Jerimy

Erin i’m glad corey finally got a dx but to have to take care of him at home and have no support for you that is a big job for anyone. why didn’t they keep him in the hospital and treat him with ivig or pp? it will help stop the progression of nerve damage. keep us updated on coreys’ condition and ask any questions you have. take care of yourself also.

[QUOTE]I’m no expert but you mentioned he had trouble with his vision. People with Miller Fisher variant of GBS often have trouble with their vision. [/QUOTE]

sometimes i think we know more than the socalled experts! LOL