Is it normal or getting worse? (Need advice)

ayut,

more than likely it is your residuals acting up. your doc was 180 degrees out. you need rest, rest, & more rest lying down. and do as little as possible. after a month you should start to see a difference. no one knows anyone’s recovery time. in case it is another real gbs attack, you could get another ncv. if it is worse than your last one, you need ivig again. take care. be well.

gene gbs 8-99
in numbers there is strength

I agree with Gene. No extreme exercise or Physical therapy! It can actually exacerbate the CIDP. Your body and nerves needs time to repair. Time and rest.
Take it slow and easy. Even when you are feeling good. It’s all about pacing in order to allow for repair and recovery. I think of it like this. For every unit of activity it takes two to recover in order to do the next unit of activity. Hope that makes sense. Keep in touch.
Linda

ayut,

if he thinks you may have cidp or recurring gbs [2 different animals], he should have ordered a ncv. what he said is right, but it is classic by the book only, & does not count for all the gbs variables of which there are many. and he got the exercise totally wrong. i hope you are resting big time as i said. he sounds like a caring doc but knowledge limited, a common trait. gbs is so rare. what meds are you taking & how much? where do you live? take care. be well.

gene gbs 8-99
in numbers there is strength

Ayut,

I would seriouly recommend getting a second opinion. Although your doctor is right that you don’t get GBS more than once, its really the CDIP that is reoccuring, you may never have gotten better. Don’t sit back and wait while you are getting worse.

Peter

If Your NCV is much worse then you are getting worse and need IVIG as soon as possible. I have CIDP got my first 5 days of treatment this summer. I saw my DR about 1 month ago and she said I did improve from the last NCV test but because I am still having problems she is ordering 3 more days of IVIG. Just waiting for the call.
If you can get a second opinion you should. This DR of yours doesn’t know what he is talking about.

Sue

ayut,

you need to go to a different gbs neuro. this one is not good for you. you are not ok. perhaps a teaching hosp or have this doc call the foundation here & speak to the medical staff. a worsening ncv, as said before me, demands ivig. you need to act. this is your life, not your docs. no ivig is asking for big time trouble. pls do not say we have not let you know.

gene, away from home

Please Go To A Specialist!!! You Are Not Getting Enough Information Or Care. Don’t Hesitate To Switch Dr.s. Do Not Wait For More Evidence Of Decline.
Be Well,
Linda

[QUOTE=pgilroy]Ayut,

I would seriouly recommend getting a second opinion. Although your doctor is right that you don’t get GBS more than once, its really the CDIP that is reoccuring, you may never have gotten better. Don’t sit back and wait while you are getting worse.

Peter[/QUOTE]
I do not know why you think that you cannot get GBS twice! My Dr. said so too. The whole time he was admitting me to the hospital for the second time! He was arguing with me, and with all the test results (but treating me with IVIG) and finally admitting that he learned something new and that I was his first!
Alma
GBS-MFv 1993 and 2004

ayut

I have been following this thread very carefully. Considering what you have said …….. things [I]seem[/I] to point more [I]towards[/I] CIDP because of the continued, gradual decline. Please notice I used the word ‘seem’. Recurring GBS would generally mean that the attack, when taking place would take place over a period of a few hours, up to 4 weeks, and then you would start your slow recovery phase – only to be repeated again months or in some cases years again (over again). Your decline from what you say is a slow decline – not the ‘quick’ decline that ends after 4 weeks.

Your doctor is wrong about living a normal life and living in a way as not to think about it. Unfortunately, however hard we try, this is not something we can THINK away! If this is CIDP, then you do need to stop the progression, and as the others have said IVIG will MOST DEFINITELY help – unless you are one of the few it doesnt help with. You should be able to tell if the IVIG is not helping after only a couple of ‘loading’ doses. Obviously there are other things that could help if IVIg is not helping, some are …… sterroids (NOT TO BE USED FOR GBS); Plasmapharesis etc.

Most importantly, please find another doctor if at all possible!!!!!!

This is an article from ‘NEUROLOGY NOW’ (November/December 2007 issue)
*I have just taken exerts out of the article.

[quote]
by: Orly Avitzur, M.D.
[B]TAKE TWO :[/B] [B][I]When and why to seek a second medical opinion.[/I][/B]

There are times when a second opinion is not only aproprate, it’s necessary. ………For you as a patient, it may be a lifesaver. Here’s when you should consider it, and why it matters.

[B]1. You dont have confidince in opinion #[/B]1
It’s ideal to find a doctor you trust. But if you find yourself questioning your diagnosis, or if you just don;t feel comfortable with your first doctor, hearing another physician’s opinion may help settle those doubts. When Todd Bischoff developed a tremor at age 46, a neurologiest diagnosed essential tremor and gave him two prescriptions to fill. “He said to let him know if I wanted to take the medications. Then he walked out of the room without explaining what essential tremor was or tellling me anything aobut the drugs.” …….Todd went home and researched the conditionm, descriptions of Parkinson’s desease seemd to fit his symptoms much better. Todd sought a second opinion, and his next neurologist confirmed the diagnosis of young-onset Parkinson’s.

[B]2. Your diagnosis is Unclear[/B]
When patients have complicated symptoms or their diagnosis is unclear, ….Although neurologisits receive an education in a wide variety of conditions, some undergo advanced training in specific areas and go on to specialize in fields. ……….

[B]3. Your Condition is Rare.[/B]
Some conditions are encountered so infrequently in general practice that their management is best handled by a neurologiest who has had greater expeirence with those cases. ……………

[B]4. Your Doctor Dismisses Your Concerns[/B]
If you are reading this magazine, it means you are a patient or caregiver who tries to learn as much as you can about your condition. ……….. (*then speaks about Michelle Farris who had pain and was diagnosed with migranes) …….Although Michelle mentioned to the neurologiest that the next medication she was prescribed could also cause this condition, her doctor dismissed her concerns. ……..

………and asked for a second opinion,” says Michelle. Her new neurologiest immedicately diagnosed a spinal fluid leak. ……..

[B]5. You want a better Explanation[/B]
…………
……..Todd, who developed young-onset Parkinson’s disease, believes that teamwork is critical for those dealing with a progressive neurodegenerative disease. “this is your health we’re talking about – you have to advocate for yourself. If you dont , you could potentially suffer from poor care, or even the wrong care.” ….. ……” You need to solidify your diagnosis so you know exactly what you are dealing wilth”, he stresses. “Otherwise, how can you most effectively treat what you have?”
[/quote]

Unfortuantely Alma is right Peter. GBS can be recurring and some have had it more than twice – sometimes over a period of just a few years, sometimes over decades. There are really a very small percentage of patients who do get this, nevertheless its out there. Recurring GBS and CIDP, as Gene said, are two totally different things.

How nieve I was back in 86, after being told that there was nothing much that could be done for GBS, when I said to my mother that I didnt think that there was anything that doctors couldnt cure 😮 …… probably ignorance mixed with some youth 😀 – How obsurd it now seems, and how I wish it were true.

I hope you get that 2nd opinion….I had strength in my hands and feet for the first month after my GBS diagnosis. The worst symptoms hit at about 6 weeks. None of us on this site know if you have CIDP or GBS…find another Neuro who has experience w/ GBS/CIDP.

Good luck, Dave

Ayut,

I think there are many of us who are very concerned about your care, and possibly a lack of a proper diagnosis.

If you were diagnosed at the beginning of August, you had IVIG and spent about 3 weeks where things started improving…..However, from what you have written, after those initial three weeks, you slowly started to decline noticably, with no improvement. This is NOT consistant with GBS. If it were GBS (which it does not seem to be), Im not sure why your neurologist is treating you with steroids which is not a method for treating GBS and [I][B]could [/B][/I]be counterproductive – some patients studied have actually done worse on sterroids (prednisone) than those who werent treated at all.

In the latest newsletter, there is an article called [B]’Does Guillain-Barren Syndrome Recur?[/B]’ (on page 4 and 5). Once again, I am only taking an exert out of it to show you that some cases of CIDP can come on rapidly and can be mistaken as GBS initially.

[quote]Patients who are recovering from GBS, or who previously had GBS, may experience sysmptoms that incorrectly suggest a new expisode of GBS, Some patients with GBS have temporary worsening after an initial period of improvement. These relapses may represent a variable response to treatment, variability in the course of the progressive phase, or failure to the immunologic process that turns off the GBS process. It is common practice to give these patients additional plasmapheresis or IVIg. Patients with a rapidly progressive form of chronic inflammatory demyelinating polyneuropathy (CIDP) may initially appear to have GBS. Tow or more relapses of a demyelinating neuropathy within a few months of initial symptoms usually indicate CIDP and not recurring GBS.[/quote]

Please, please consider the fact that a great majority of doctors and neurologists know the very basics of GBS/CIDP and are often not able to make a correct diagnosis. I really cannot in good conscions, sit back and say nothing regarding your treatment. From what you have said, he is not willing to listen to you, your symptoms just dont seem to gel with a GBS diagnosis because of the worsening over time (not just usual GBS fatigue, pain etc.), and also, he believes you have GBS yet he is still treating you with sterroids.

ayut,

i disagree w the meds your doc is giving you. B4 any of what you are taking is Rxed, you should be trying ivig every 6 weeks. if that doesn’t work, then only 1 of the things you are taking at a time to see what works. nothing wrong w treating cidp aggressively, but i believe there are other less harmful ways to first try & treat cidp. take care. be well.

gene gbs 8-99
in numbers there is strength

Did you get methylprednisolone 1 gram over 5 days or 1 gram per day for 5 days? I have never seen anyone get the latter–3 gram at 1 g/day for 3 days is the most I have ever seen anyone get. Solumedrol (methylprednisolone) works pretty quickly so if you got really high doses (>1 g) and are not better, consideration of alternative treatment should be made like IV IgG. This is also very likely the case if you got a total of 1 gram over the five days, but you might want to wait a few days to make sure that response is not delayed. I am not sure if you mean that it is a week from the start of the 5 days of solumedrol or the end. If the end, it did not work enough. Because of the way CellCept and Immuran work, they are slow to make a difference and so you have to take them for a while before their effects kick in.

I am like Gene in that it seems a little concerning that you started CellCept and Imuran both at the same time, both at moderate doses (assuming that your kidneys work well). This doctor is really aggressive to give you all this, but many would have chosen either CellCept or Imuran and then pushed that dose up to a higher level if needed to maintain control of the CIDP. The problem may be that you get cumulative side effects from both of these especially perhaps low blood counts and infections with being on these doses of all three from the beginning.

The more I read about autoimmune diseases, the more important it seems to me to get control of the process aggressively (for CIDP with IV IgG or steroids) and then use something to maintain the immune system in a controlled manner (which seems better done with IV IgG or an immunosuppressant medicine).

WithHope for Cure of these diseases.

I have been following this thread as I have been experiencing some neuro difficulties and am beginning to wonder about CIDP. I had GBS in ’83 and made a fairly remarkable recovery with very little in the way of residuals. About 3 years ago, I began to have some problems pop up and they continue to increase over time. Any of the reading I have been doing is pointing me in the direction of CIDP. I can even see that perhaps even 4 years ago I was begininning something. I have been told the symptoms are residuals from the GBS but why now? Can a person get CIDP this many years later? I know it is not GBS because of the slow onset. Does anyone out there have a similar situation and what are you being told by your neuro? Any input would be appreciated.

I just finished reading this entire thread & felt from the very beginning that you probably had CIDP & not GBS. Oftentimes neuros will start with infusing solumedrol (methylprednisolone) first, as it is cheaper & does work much of the time for CIDP. I was given 1,000 mg (1 g) for 5 consecutive days, as a loading dose, so that is possible that you were given that much. But I was basically bedridden at the time & they had already tried IVIG & PE first. I agree about the imuran, only one drug should be tried at a time, so one knows what it is that is actually working for you.

Usually with steroid infusions the results should be immediate, so if you haven’t seen any improvement by now, you probably won’t. I think you should be given IVIG ASAP, enough time has been wasted. Besides, it seemed to work well the first time around. BTW what physical condition are you in currently? Have you declined at all since December?
Pam

janet,

although there is no guarantee you do not have cidp, i doubt it. it could be recurring gbs, but most likely your residuals. many after 10 yrs or more start experiencing what you do. you can always get an ncv to be sure. take care. be well.

gene gbs 8-99
in numbers there is strength

Gene,

Thanks for your response. I did have NCV but there seems to be a lack of communication between my three drs. Can you give me some indication what it should/could have shown and what questions I should be asking? I often read your posts and you seem to have a very good handle on this thing. Thanks.

hi janet,

first you should get copies of all your medical reports from every doc you have seen. then you can be sure each doc has a copy of each report since you can then give each everything. wether they read & can understand them is another matter.

basically a new ncv should be compared to an older one to look for new damage. i don’t think we know for sure that this 10+ yr outbound deterioration from inital gbs attack is the exact same kind of ‘normal’ residuals acting up, but assumnig it is so, no new damage should be seen. if there is new damage, then ivig.

hope this helps. gene

Thanks Gene this helps. The problem I am running into is they did not do the EMG and NCV tests on me when I left the hospital back 25 years ago. They did do them when I was in ICU but that hospital has since closed. I am going to see if I can find my neuro from back in ’83 and see if he has any records. I know this has been a concern for my new neuro as he says he has nothing to compare my results to. There is a polyneuropathy present.
Thanks again.

Stupied me but what is ncv??
and the doctors say you dont get GBS again, well in one year I got it twice, from diffrent attack. but it was 12 months between.

nerve conduction velocity

nerve conduction velocity.

okey that was done with me yesterday,and Im still tierd after it, took over 2 hours, they did not belive I got so much worse.

janet,

have a ncv done now. then you have a baseline to work from for the future. take care. be well.

gene gbs 8-99
in numbers there is strength

Gene,

I had both an NCV and an EMG done in Nov. The neuro said exactly that….it would give us a baseline for now. I called around yesterday and my old neuro destroys all his records after 7 years and the hospital that I was in purges their files after 10 years. I spoke with medical records yesterday and they were going to see if they could find any records that remained. I just got a call from my dr’s office and there are some reports there!!! I am so excited to see them…not sure what they will tell me but anything will be helpful. I am going to head into town shortly so will let you know what I find out.

Well, I am disappointed as I didn’t get any info that relates to an EMG or NCV. I did find out a few things but not sure what it all means.

When I was first seen by a neuro, I was covered in open lesions from the trunk down to my toes. I had a lumbar puncture and the protein level was 2.04, red blood cells were 16, white cells 1 and glucose was 5.5. I had 8 plasmapherisis treatments, with a couple of them being plasma exchange. Other than I get the plasma piece, I don’t understand the lumbar puncture results, or why the rash/lesions. Anyone have any ideas on what this means?

I’m seeing each Doc has a “pet” approach, none seem to be fully informed?

I’m a CIDP patient- Diagnosed in September, I was haing trouble walking, dressing, standing, turning wrenches, door knobs, etc. After the EMG nerve study, and LP.

Doc started w 60 Mg Prendisone, it worked aral well, at first, but two months later started to break down again, Anyway, I’m on second moths IVIG after my initial 5 day load, I t is not working!!

Doc is stuck on IVIG and Prendisone, and talking Imuran and saying I ask too many questions?

ANYWAY, I’mfinding, like you, the more I exert, theweaker I get, so, very moderate exercise, friend, if at all. And search out a Better GBS Doc, ask around, here, or w other sufferers that have had success?

I’m new to all this, so forgive my not “posting a thread” or whatever? But, may I ask? IF I TRY TO “DO” TWO DAYS AND AM STRETCHED OUT FORV TWO, WHAT DO I DO TO GET MY STRENGTH UP?

IS ANY EXCRCISE GOOD? LIKE MY FRIEND HERE< I FIGURE THE LESS I DO< THE MORE ATROPHY? WHOW DOES ONE BALANCE? noun intended. Sorry if I "stompd on a thread" I feel the author's frustration, I'm with you, friend, but don't overdo (whatever that means;-) Eric

janet,

a lp protein count must be over 55 to indicate gbs, but this test can give false negatives. take care. be well.

gene gbs 8-99
in numbers there is strength

Eric,
If ivig/pred. is not working, there are a couple of things to try before imuron. You could increase the freq. of the ivig, ie if you are now doing loading doses once a month, try loading doses every three weeks, or you could even split the month up. For example if your loading dose is over four days, try getting it for 2 days every 2 weeks. Something else I thought about, if you know the pred. is no longer working, start weaning off of it (with docs reccommendation of course) Some people experience weakness from pred. as a side affect.

If this ivig course does not work, try loading doses (the full four days ) every two weeks. Once you have tweaked the ivig schedule all that you can, pp is an option, then cell cept or immuron.

I guess your doc and you also have to figure out if you have progressive, or relapsing, remmitting cidp. Although the treatments are pretty much the same, the response may not be as good in progressive. Good luck1
Dawn

I guess my point/question/problem is; though the prendisone has helped, is helping- it is losing it’s effectiveness and is causing other issues.

I’m told the IvIg should give some relief, almost immediately. It has the opposite effect! Took me 2 weeks to recover from the initial Load and a week toounce back from the second treatment. By that, I mean blurred vision, abdominal pain, MORE numbness/tingling, not less? I awoke the night after my second treatment numb from the waist down, thinking I was paralyzed? Scary when you are not fully awake, but it subsided.

I’m, actually, niot doing too bad- but it’s not improving and sseems to eb n flow dthroughout the day. I AM weak, exhausted and, basically, unable to work in my position as Regional Sales Rep. I’ve been advised to apply for SSDI, which I’ve done, but, have been praying for Treatment to kick in and me to get back to Business. (I’m a self-employed single fatther of two, who’s “to do” list is Prodigious!)

Neuro tried backing off the Steroids to every other day, ummediate relapse. POlayed w dosage til I’m kinda at 40mg one day, 50mg the next, any less than 40 and I get bad quick?

Look, maybe I’m just impatient? I was only diagnosed in Sept (EMG, NC and LP all seem consistent w CIDP) He said “your protuens are at 60 when they should be 40” and I saw the scope patterns on the nerve conduction (I used to sell ignition papattern scopes) there were several groups on a “30% delay” and no automatic reflexes (legs or arms.

It feels like they are either misdiagnosing me, mis treating me or something. Meanwhile I rarely sleep more tha 5 hrs, and am getting weaker by the week? The IvIg just makes me ferel sick, blurrs my eyes (maybe reacting to my contacts?) and makes me feel even more wiped out? The pain in my abdomen is dismissed as “unrelated” thoughI did have them check liver enzymes, as well as kidney, last Infusion. Ib was told both were “normal” but my “sugar was high 138, and protien low?” I don’t know!

I’m 46, w one going away top college, another on 6th grade, a 3 acre yard, a big old house, a Business I enjoy- One Man Business (finally) and so many half finished projects WITH NOBODY TO HELP.

Sorry to complain and wax long, here, I’m just trying to figure whether to just, pray for SSDI or fight tooth and nail to get better. Doc says “wait n see.” Meanwhile, I’m not sleeping, not able to do much else, usefuland feeling like Atrophy will knock me out! Broken bones, traction, rehab, etc, I’m well used to, but this seems so nebulous and infinite?

Look, thanks for listening, I’m taking any advice and thinking of switching Docs (mine is understaffed and overworked- even if he does seem familiar w GBS-CIDP)

Sorry to bother you
Peace through Christ,
Eric

Do you think a wrong dx is a possibility?* Have they checked the other obvious possibilities?* Charcot Marie Tooth (CMT) MS, Lupus. You mentioned that the ivig is not helping at all, it it were the other things, ivig would not help those. You also mentioned sugar was high, two things to consider, Type one Diab. could be starting, as other autoimmune disease to tend to join in when you already have one, or, is the ivig brand you are getting sugar based, and is the blood draw before the ivig. Is it a fasting blood test? Some ivig’s are sucrose based and that is why the kidneys are affected. We started on gammaguard s/d powder, Kevin reacted awful, the switched to liquid which we are currently on and am contemplating gammunex if we cannot get Kevin’s side affects under control. Maybe you could try switching.
I am so sorry this crap is happening to you. Kevin is a child and has no responsibilities and will be well taken care of when we leave this earth for at least 15-20 years, I cannot even imagine the frustration and worry that must follow you minute to minute. I wish there was some way I could reach out to help you. FYI, when I win the lotto big, I have a list of all my friends on this sight and what I am going to get for them, I will add you to the list. There really is a list!!!
Dawn Kevies mom

I thought about something else related to the sugar increase, I am pretty sure the prednisone has something to do with insulin and how your body produces it, check that out, as I do not know enough to comment about, I just remember reading something about it. Also, the eyes could be the Miller Fisher varient of cidp. Has your doc suggested that, could cataracts be a possibility, that is another side affect of prednisone.

Call the manufacturer of the ivig you use, they have a special department that deals with adverse affects. I have done this several times with gammaguard with Kevin.

The nausea, headache, aches, fever, flu like symptoms, aseptic meningitis reaction are common reactions for some, Kevin gets them. But I have never heard about the paralyzed feeling below the waist. Call the drug co. and inquire. Is it possible you are in a relapse and maybe the plan you are on is not sustaining and these new symptoms are not a result of the ivig? I am sorry if I am confusing you, I just want to try to reach out to you and let you know I am thinking about you. If I am over stepping please let me know.
Dawn

Thanks for your kind words n thoughts. The sugar issues ARE from the Prendisone, I’ve neen stress tested for Diabetes and have no Family History. Plus the 138 of the last test was not “fasting” (right after Breakfast)

I’ve suggested CMT, I’m to see him Thursday. The “Flu-Like” ymptoms persist long after the infuusion and the Prendisone keeps the weakness, numbness, etc, in check, but the IVIG has no real effect, I see, at all. The numness sieems to be stable, but the tingling/weakness has spread up my thighs, grr!

ANYWAY, I’m going to press him for answers, not BS, and, if he isn’t going tyo change his “stay the course” attitude, Ali, from here and Marylin, contasct person, here local, have given me names of a couple other docs that specialize in this crud? We’ll see.

Yes, I’m frustrated, but I’m in alot less pain than many- I’m just trying to plan-alot resrs on my shoulders. And, what idf, they get no further, AND SS denies my claim? Both likely, as I see it?

Anyway, I’m better off than many and not destitute, just yet;-) Just trying to effect “Damage Control”

Peace to you,
Eric