Hi all –
Here’s my 2 cents on this. I was dx’ed on March 18, 2005 and spent the first 6 weeks in a coma (w/ vent) and the next 6 weeks in a rehab but was able to walk within another 3 months. I continue to have parasthesia (pain and numbness) in both feet and my right hand (and yes that was my dominant hand before). I tried most of the ‘solutions’ that get mentioned on the board. Was on gabapentin for a while with no relief and then lyrica (no relief either) until I finally realized that I had both side effects of weight gain and increased appetite, and I didn’t need either one of those side affects. I have also been on a dose of percocet (5/325 x3 / day) to take the edge off and help with the pain. A few months back I reiterated something I’d said before to him that either I needed more percocet or none. Doesn’t take a genius to figure out what he said and what I knew. I miss the ‘perceived’ relief when taking it, but am probably better accepting the constant low to mid-level pain all the time. I did think it funny that my doctor used an analogy of, if a cat got hurt, it would just learn to deal with it! At some levels it made sense and yet I had so many snide replies that I had to suppress.
I think it’s probably for the best. Wish I could also get off the coumadin which I’m on due to the fact that I had 2 blood clots in the ICU and then that left me with chronic venous insuffuciency (CVI). Which means the blood flows down, but not so well back up. So i’m left with bloated legs and feelings of fatigue (at least that fatigue can keep my nerve fatigue company) and it add to my feeling cold due to thinner blood.
Ohh well, good luck with your progress!
Well, thank you all for responding. It’s good to know we are not alone in this battle!
Dick @ What I experience in my pain is minor compared to much I read here and I am thankful for that, but I wonder if these new feelings are just the beginning…that is why I am asking questions now. As I mentioned, I was dxed in Dec ’10 but I had only started feeling symptoms in Sept/Oct ’10. So I was dxed rather quickly which I am thankful for also. So, that being said, I didn’t have a lot of deterioration to my nerves that I know of. Weakness, shakes, tingles, fatigue were what I experienced mostly. Now with this onset of sparks & shocks AFTER the IVIg I have been on since Jan every 3 wks, it concerns me. The shock pains are all over not just where I felt the CIDP initially (mine was only hands and arms, not feet). Now I feel these shocks all over, back, stomach (internal), toes, heels, buttocks, tongue (weird), you name it! There is no way it could be from my back issues only.
guskno @ I also keep a log as you suggested, thanks. And I do take it with me to the doctors when I go for infusions. I have increased in my strength very well and that seems to be good enuf for doc, but these other issues have me wondering. I will present them to him again when I go April 7th and see how he puts it off this time! My 6 month won’t be for a bit yet, so I will continue to keep track.
Paul @ thanks for your input and I hope you do well in your therapy. Keep us posted.
Goodney & GAT @ thanks for your replies and encouragement. This site as been real helpful to me over these past few months.
God bless us all! 🙂
They are giving me 1030mg of Cytoxan per infusion once a month for 6 months and then see what the results are. I have been getting 120grms IVIG every two weeks for the past 8 years. I did haave 5 PE about 9 years ago but had a negative reaction. While I have had Solumedrol in the past, I have not had it for some time.
[QUOTE=Rocker]WOW… hi there. My, your post is not at all long (trust me because I am long winded).
Can you tell me more about what it is like living with GBS issues?
Side note: Try to break paragraphs like the one above into at least two parts… it would be easier for me to read and follow… no worry about grammar or spelling, just set it so it is easier to read, OK ?? :)[/QUOTE]
Living with GBS issues? umm the only thing i can think of is when people would stare when i walked funny, but that is changing quite fast this past year my hands have gotten stronger and so have my legs too, people really dont notice now and everyone around me said, how surprised they are to see me walking alot faster and doing much more things.
o yea my fingers though i get somewhat embarassed/uncomfortable because they don’t open all the way yet but im determined to get that fixed by next chirstmas i hope. other then that nothing is really an issue but if you woulda asked me that last year i could have went on and on. if you got any more questions i’ll answer them when i get chance.
i have the study on friday night. I go see the doctor next week to discuss results. I had sleep apna before the cidp. this is the same neuro th at hasnt done treatment yet. He says he wants this done before he goes any futher. I dont see the correlation. I also have a question for him about pt prescribing the Y five times a week. My parents insist htat i go and my dad stays the whole time to make sure i am doing it. Sometimes he goes in the othwer room and sits to read a magazine and i take it easy. good news is no surgery on my foot for now. I go back in 3 months but the ortho wants me to do everything with the brace on.
Still no driving they said that waas up to me. i just dont feel safe but my mom wants me to try. i will probably goto the local cemetary and practice. thats where i learned to drive.
It’s going to be 90+ degrees in California tommorrow. I hate the hot weather! It makes rehabbing harder to do as the sweat rolls the entire body down like a rushing river. Summer time is around the corner and that is no picnic either. Recovering GBS’ers always must remember that we are all human and must take a break once in awhile. I was helping out carrying the groceries inside the house and one plastic bag had too much weight in it and caused a strain (twinge) in my right bicep area. Luckily after 5 days, it feels much better. I’m going to a BBQ next weekend and the menu consist of vegetarian hot dogs, green salad and alot of healthy foods (people are more self conscious on health issues to reduce health problems in the future) – That’s a great idea but not everybody thinks that way – Having a variety selection pleases everybody in the party – Don’t dictate and let the party carry on for a few hours.
Thanks for the warm welcome…
mdm thanks for helping out finding the information, 10 days after my 18th birthday is my anniversary of diagnosis so i want to get a memorial tattoo i have it all planned out in my head so im hoping i will be cleared to get one…
thanks to everyone for your posts
Has anyone here read my posts carefully?
Don’t you realize that I have done my all, and it’s a done deal?
When you criticize me (for not taking action?), you are beating on a dead horse. It’s the doctors, the hospital, the system providers; they’re the ones that need to change. They hold all the power and they’ve made up their minds how to treat me, and this is the way it is. Dealing with them is like beating my head against a stone wall; I’m the one who is hurt, and they are immovable and impervious. Plus, I’m not forgetting that they hold power over me to discontinue all health services to me; and I do require asthma and thyroid meds on an ongoing basis. I’m already scared that someone will recognize my town, and I’ll be in trouble for speaking out about my case and other things.
I do not have an aggressive personality, and certainly no aggression to fight the system. I barely have enough energy to cope with these relapses, and recover enough to do my housework and earn a living. I’ve lost many of my music students, but still have a few, and it’s just enough income for me to live on. I’m lucky to have that, and I hope it doesn’t get any worse. If it does, I’ve saved some money to survive on for a while, I think.
The health system has changed so much that all the doctors are pretty much the same now–fairly hardened, often indifferent. You need to understand that the system you dealt with is not the same anymore, as far as priorities, or even the desire on the part of the professionals to render health care to the sick and injured. The strong survive and the weak perish.
There were 2 more death cards at the post office today. Everyone in town has been sick for the past few weeks, ever since the town sprayed all the trees with pesticides. This year the air has reeked with these toxins many a time, and there are always more deaths then. I know I’m having another relapse; my vision deterioration, constant headaches, burning, icy feet, more tingling nerves. I feel just wretched these days.
This year, I’ve tried hard to get a buffer zone around my residence, because 40 organizations in this town get permits for pesticide spraying, including the big organizations like hydro, railroad, etc. who do the large impact type of pesticide spraying. In spite of the fact that I had been awarded a buffer zone from the Manitoba government, the town actually sprayed my backyard trees anyway a few weeks ago; this is only about 15 feet from my residence. I’ve been dealing with this since, and got placed on a buffer-zone list with about 5 different organizations using pesticides near my residence. This will help somewhat; but what we really need here is a ban on cosmetic pesticides– the lawn and garden and tree pesticides that become airborne, leach into the water supply, poison the gardens and impact on other people nearby. Pesticides contain neurotoxins, among other dangerous substances; I did some research on this on the internet this winter. I will try to help others and myself this way. But there is no more I can do with these arrogant, hardened, careless doctors, so stop telling me to, OK?
ps: I do recognize and appreciate your kind concern; if you didn’t care, you wouldn’t have bothered to write. This site is a real life-line for me, so don’t turn against me, I am asking you sincerely. And don’t misunderstand me; it wears me out even more than I am already. Please don’t blame the victim.
Actually my boss is a woman.
The morale in almost the entire office has totally changed (won’t happened for long but seeing smiles and conversations from co-workers and managers alike was a welcome sight).
Rehabbing seems to be better (working towards lifting 50 pounds/job requirement/Got up to 33 pounds as we speak) as extra pressure (mentally) gives the body and soul a true shot of andrenaline to get stronger each and every day.
Thank you for the suggestion.
Just found out my boss went to the hospital this past Monday. Had food poisoning and will be operated on tommorrow. It felt like a huge mountain have been lifted from my shoulders and there is a small light at the end of the tunnel. I’m not a bad guy though. I plunked in three dollars towards the bouquet of flowers and signed the get well card. Haven’t felt this good since I left the hospital for good in 2006.
Nice to meet you.
It’s hard to smooze w/upper management.
Been working w/the same company the past 20 years.
Found out that I can get along w/anybody until now.
She knows from past experience when a person tries to sugar coat her.
Always have that feeling that good things happen to good people.
I’m on that list.
I do not have anything like this, but I agree that blood pressure and blood flow might be the top things to think about. If you have autonomic involvement, you might not regulate your blood pressure exactly right anymore and with the “stress’ of driving, get higher blood pressure than expected and then have it get lower than it should.
Another thing to think about is the position of your neck now. I know after GBS, I held my head/neck differently because of weakness and this sometimes made problems and I would feel like the room was spinning. If it persists, tell you neurologists again. You probably had an MRI, but these do not look at blood supply to the brain, just that all the parts look right. It is very unlikely to be a blood supply problem other than that caused by blood pressure, but in that tiny chance there are ways to make that better.
WithHope for a cure of these diseases.
You started off saying that there is a strong family history of CMT(-like) and that your neurologist says that you have a hereditary demyelinating polyneuropathy. It also sounds like they have done a number of tests to figure out what else might be going on–since even autosomal dominant inheritance is only 50%. If your neurologic symptoms are like other family members (realizing that there can be a good deal of variability in severity and onset even with the same genetic change), your doctor might NOT do a lot of other tests like an MRI and spinal tap. These might not be necessary with the family history that you have. My little suggestion for you specifically is to ask what about your symptoms and course of disease makes him/her think that this is indeed hereditary. Ask what other hereditary things than “classic” Charcot-Marie-Tooth this might be and how many of the hereditary neuropathies cannot be found by genetic testing?
Personally, I would start of saying that you are confused about why he/she said that this is hereditary polyeuropathy and yet the genetic testing could not confirm that and could he/she explain that to you more.
I missed it if you have gotten IV IgG. IV IgG will not help the hereditary polyneuropathies because the reason for them is not due to attack by the immune system on the nerves. My guess is that you were told that IV IgG would not help and this is why.
Good luck. WithHope for a cure of these diseases
As Pam states, axonal damage is damage to the nerve itself. Most GBS is damage to the insulation (myelin) that coats the nerve making the nerve conduction less effecient but still there. It is harder to heal if the nerve itself is damaged because there are less nerves to tell muscles to work. You state two things that I wonder about. First you say “with the ups and downs” and that your mother has not been able to walk at all the last six months. the question is “why”–did she become progressively weaker or are things getting better and worse. If the latter, that might make one think about CIDP instead of GBS. CIDP is ongoing damage to the myelin/nerves and she might respond to treatments to help stop the ongoing damage. This is worth asking the neurologist about. this being said, it will be really hard to get back to walking after six months without doing it when you are 73 years old–lots and lots of exercising and working on it and balancing. If people are “fiesty”, age does not matter, but there are some people that would rather spend what energy they have to “be” with others and do things in a wheelchair rather than make so much effort just to try to walk again. She will have to be really, really careful not to fall and break a hip since her bones would have gotten weaker without walking. I also do not mean to sound discouraging, just trying to be realistic that sometimes you have to pick the battles you fight after this blasted illness. I have learned more about compromise than I ever wanted to know.
WithHope (GBS 3/07)
There are not necessarily recommended lab studies for a child. It is sometime recommended to occasionally check a Cr (or BUN and Cr) to look at kidney function and a CBC to make sure that there does not occur either lower platelets or anemia. Typically, we would check these a couple of months after starting “higher doses” of IV IgG. There is not a lot of reason to check immunoglobulin levels since most of us are not immunodeficient and do not have leaky systems (such as nephrotic syndrome or protein losing enteropathy) in which extra immunoglobulin is lost from the body. Often also at the clinic where we give immunoglobulin, we will order an IgG level, IgM level, and IgA level before starting immunoglobulin–the first two to make sure that there is not an underlying immunodeficiency that results in immune dysregulation and the last to make sure than someone is not IgA deficient. one in 700 people are and 1 in 15-20,000 will have a severe allergic reaction (anaphylaxis) to IgG infusion because there is a little IgA collected with the IgG. Most importantly, watch for decrease in amount of urine or for rashes/hives.
With Hope for cure of these diseases.
Just because your symptoms don’t read like they do in the medical journals, doesn’t mean you don’t have GBS. The doctors are scrambling to figure something out and you have to be careful here, because most doctors hate to say they don’t know something, so they will just guess at what you have instead of asking for another opinion. I had a doctor tell me I didn’t have GBS since my symtpms started in my head and neck, and not in my feet like the book said. I was happy to be the one to tell him he wasted all his parents money in medical school, because I have GBS. My symptoms started in my head and neck and worked its way down to my toes. GBS usually starts in your feet and works its way up to your head. I lost use of my hands also. Most people develop muscle loss or weakness, I had pain and lots of it. My muscles would cramp when ever I would move, breath, cough, laugh, you name the muscle and it would cramp. I could still move, although it was painful to move, but I could do it if I had to. I also had breathing and swallowing problems. I hate to be the one to tell you,:eek: but the usual way to determine if it is GBS is a spinal tap. Sorry big guy, its not fun, but if you have it done, lets hope you don’t get the first year resident that I got.[url]http://www.gbs-cidp.org/forums/images/smilies/eek.gif[/url]
[QUOTE=greasemonkeyfred]I started driving again after one year .I will tell you that you will have several problem with hitting brakes and giving gas .Also I have some trouble with hitting in traffic long time .I start getting week holding brakes .So I just put in park .:) Good luck and be careful :D[/QUOTE]
I was paralyzed fromthe mouth down to the waist. The only problems I worry about is steering, putting the key in the ignition, etc.. Finally practice officially w/a friend driving and was a little rusty but once the everyday occurence of driving again will come naturally. Heard that adaptive driving equipment will help me out in the long run. I escape death, recovery, rehab and now returning to normal everyday stuff is my next road block. Just got back from my eye exam and came back 20/21 (have a little near sight problem but no biggee!).
[QUOTE=TCorrell]I was 100% paralysed by my bout of GBS. I started driving again 5 months after diagnosis. It was 2 1/2 months after release from the hospital. My doctor never reported me and I just asked her if I could start driving again. I was walking independantly and complete control of my limbs.
Every individual is different in the recovery process. Congratulations on your recovery progress! My worst scenario was about 95% (could only move my eyes and right foot). I’m getting there but the waiting part to see the recovery of my nerve damage in both arms takes it’s toll. Take care!
I have CIDP and after a severe episode I was left unable to drive. After many months of recovery I was ready to try and get back behind the wheel. Here was my process – I also live in California:
First, I went through an evaluation at a local hospital that offers a driving rehabilation program. This took about four hours, wherin my strength, limitations, vision etc. was evaluated. Then, a car was setup with the recommended adaptive equipment (in my case full-hand controls and spinner knob) and I went out driving with an instructor. When I proved I could drive safely with these modifications, they gave me a one-page certificate that was also sent to my doctor. This cost about $275.00
Then, I bought the hand controls and they were installed, and I was back to driving again. For reference, my doctor never reported to DMV that I should not drive, I just stopped driving when I became so disabled.
About 8 months later I received a normal license renewal letter from the DMV. The renewal notice asks if you previously have been unable to drive because of illness. I of course disclosed YES on the renewal notice. About two weeks after mailing in the renewal form I was sent a series of forms seeking more detailed medical information for me and my doctor to fill-out. Then, I was forwarded to the DMV re-examination department to meet with them and discuss the data, etc. I also took a written DMV test at that time.
Then, I was sent to take driving test, which I passed easily. My driver’s license was amended with several restrictions – Must have hand controls, spinner knob, and must wear corrective prism lenses to correct double vision. The DMV will re-examine me every few years.
All-in-all, it was pretty easy. Hand controls cost about $900.00 installed, if you need them.
Best of luck to you.[/QUOTE]
Have a feeling that I will experience what you went through. Was told by the person in chage of the adaptive driving course not to mention my illness (my driver’s license expires in 2010/Perfect record) to the DMV. It will bring in too much “red tape” from the DMV. Thank you for replying.
[QUOTE=Gemcutter]Hello Udaman, It depends how much feeling you have in your limbs. It took me some time years to be able to drive again. You will have a problem hitting the brakes way too hard and I still do that. Cruise control is a life saver.[/QUOTE]
I’m about 80% right now w/both arms. Upper and lower body strength about 90%. Just nervous about not messing up. Thank you for your reply.