"Ask the Experts" – One Person’s Notes (Topics 1 – 3)
AnonymousNovember 9, 2008 at 12:10 pm
I thought it might be useful to summarize my notes from the “Ask the Experts” session. However, there are a few things to note first:
[*]I have not sought the Foundation’s permission to do post my personal notes. They could remove them. Nobody should feel abused if they do.
[*]I make no claim that what I write here is completely and accurately represents what the speakers actually said.
[*]To the extent I could, I did note the names of the answerers. I have not included their names here, to help protect them if I have mischaracterized their answers.
[*]This thread is not the best place to debate the answers. It would be a good idea to start a new thread for the debates.
[*]This will be more useful if others add their notes.[/LIST]All of the topics are now posted here:
[*]Question: Why do so many neurologists (physicians) not believe in fatigue in GBS?
Answers: I think one answer was “Because they’re bums.” or something to that effect. More seriously, it is only recently that even the experts have really recognized it as a significant issue. The medical literature on the subject is all of 5 articles. It would be helpful to let your doctors know that this literature exists (have them PubMed it). Part of the problem is that there is no accepted definition of fatigue as a clinical condition.
[*]Question: How does one find volunteers for clinical trials?
[I][Author’s note: I did not hear the answer to this question][/I].
[*]Question: What is the association between Hashimoto’s thyroiditis, GBS, and Bell’s palsy?
Answer: There is none noted in the CIDP Outcomes Survey. There is an association, though, between multiple sclerosis and Hashimoto’s.
[*]Question: I have had GBS two times. How do I prevent a third attack?
Answer: From one doctor, those who have had GBS have a 30x greater likelihood of developing GBS again than does the general population. One doctor suggested that if the GBS occurs less than one a year, it may not be worth preventing, due to the side effects of the medicines. Another doctor suggested that the recurrence could be CIDP instead. Immunosuppression was a possible course of action.
[*]Question: What is the relationship of recurrence and surgery? The questioner work up from surgery with a recurrence.
Answer: There is no evidence of a relationship between anesthesia, pre-medications, or type of surgery.
[*][I][Author’s note: My notes are not very good on this question.][/I]
Question: Is there a relationship between the shingles vaccine and GBS/CIDP?
Answer: The shingles vaccine is a live vaccine, so that that into consideration. If you have had GBS, this might be OK. If you have MMN, perhaps it is not OK. There is no data to support any position.
[*]Question: Should I have a flu shot?
Answer: It is a matter of risk. In 1975, the swine flu vaccine induced 1 case of GBS per 125,000 people. The number of people who died from GBS induced by the flu vaccine was 1 in 2 million. The number of people who died from the flu that year was 1 in 1000 people who had the flu. The doctor thought the benefits of protecting the population at large was worth the risk of GBS, even with its concomitant problems. There is one study of GBS patients who received flu shots, in which 5% of the recipients had noticed some worsening and ½% (i.e., 1) had to be hospitalized. If you are taking steroids or immunosuppressants, then you should get a flu shot or other vaccinations. However, those people should not get live vaccines. If you are getting IVIg, then you might not need a flu shot. If you do get one, get it before the next round [I][Author’s note, I missed the timing here. I am not sure if it was immediately before or a couple of weeks before.][/I] IVIg would not interfere with the vaccination. Not only is antibody production stimulated but vaccines, but so also are T-cells [I][Author’s note: I suspect the doctor was meaning memory T-cells][/I]. The CDC has stated that if you had vaccine-induced GBS, then no vaccines. In CIDP, there is a report of 3 relapses perhaps related to tetanus toxoid, but this patient also had 10 other relapses as well.
[*]Question: Should one take SF1019?
[*]Question: If one has CIDP and weariness, should one just push through it?
Answer: One should rest, or more accurately, pace oneself. If you have a physical therapist, make sure s/he has experience in treating neurological conditions. A good practice is to have a prescribe therapy program, specifically tailored to the person’s needs. Following it helps quite a bit. In one doctor’s opinion, the best course for exercise, in MS, GBS, and CIDP, is to do little, but often. On a slightly different note, there is a proposed study to see if cytokines (some of which are responsible in part for fatigue) are reduced with IVIg.
[*]Question: A patient with GBS 2½ years ago has worsening residuals. Will a second round of IVIg and physical therapy help the patient walk?
Answer: It seems like something else is probably going on; this problem is not consistent with GBS residuals. One should ensure that the diagnosis is correct.
[I][Author’s note: I did not catch if the doctors answered the question directly. Given the discussion about diagnosis, I would suspect the answer would have been that they doubted it.][/I]
[*]Question: I have CIDP. IVIg and prednisone have been ineffective. Now what?
Answer: Re-evaluate the original diagnosis. If CIDP is confirmed, then try plasma exchange first, then the less conventional therapies.
[*]Question: I had GBS 9 years ago, but I have residuals. I have been told I cannot donate blood. Why not?
Answer: While several of the doctors expressed the opinion that you could, there is no data to guide the blood collection agencies. To ensure the safety of the blood supply, they must err on the side of caution.
[*]Question: I am pregnant and a GBS survivor. Can an epidural trigger GBS again?
Answer: There is no data, but most likely it will not be a big problem. The anecdotal evidence varies, from no problems at all, to very bad problems.
[*]Question: Is there a correlation between CIDP and vascular disorders or hypothyroidism?
Answer: The only correlated co-morbidities are with irritable bowel diseases and MGUS (monoclonal gammopathy of unspecified significance). There is no correlation to vascular disease and to hypothyroid.
[*]Question: Is there an alternative to EMG/NCV?
Answer: No, not really. It is better than a biopsy. However, EMG/NCV is really only a diagnostic tool. It should be used only to answer the question of whether you have some neurological condition. In the case of GBS, if the first EMG/NCV were normal, then repeating it 6 to 8 days might be helpful. The expertise of neurologists in these tests is variable. Make sure yours has experience.
[*]Question: Do homeopathic treatments work? Are there negative effects?
Answers: A Cochrane review of the use of acupuncture in GBS suggested it could help with pain [I][Author’s note: I may have this wrong. I hope others will confirm or reject.][/I]
On the subject of zinc, it is not harmless. Increases in zinc level push down copper levels, which can lead to neurological problems. Even small amounts might be a problem; there is evidence that zinc used in denture cream can cause copper deficiency. We don’t know what a safe level is, so it is best not to take it.
On Vitamin B6, be careful in taking it. It can cause neuropathy. Certainly take no more than 200 mg. It would be safer to keep the total B6 intake to 50 mg or less. The RDA for B6 is 5 mg.
On gluten therapy, I missed the comments.
[*]Question: What is the relationship of testosterone and estradiol (or estrogen) in MS?
Answer: Estrogen is probably overrated. In MS, there is something in the serum, but there are elevated level of cortisone as well as estrogen. [I][Author’s note: I may have misunderstood this answer.][/I] In rheumatoid arthritis, 75% have low testosterone, but that is likely as consequence than a cause. There is no evidence of low testosterone before developing RA.
[*]Question: Should I use chemotherapy? [I][Author’s note: I missed parts of this question and of the answers.][/I]
Answer: Many therapies are very likely to damage partially healed nerves. It depends on the drugs, how long, and how intense. Vincristine, for example, is contraindicated in Charcot-Marie-Tooth, and by extension probably should not be used in GBS. Some doctors were not as concerned about chemotherapies as others were, but they were all cautious.[/LIST]MarkEns
AnonymousNovember 10, 2008 at 11:14 am
Great thread start.
I agree with protecting the Dr.’s. I replied in another thread one’s name and information – however if that is improper, I apologize. I thanked each Dr. that attended that I could. Taking time to discuss this was special to me, and everyone there, I’m sure.
To the Foundation, if I mispoke in my other threads, please let me know.
There are a couple of things I’m chewing on today, one is the idea of the flu vaccination, I posted my feelings/opinions on another post and I’ll briefly summerize here:
That the chances of contracting GBS/CIDP is much greater from the actual FLU or another other diease that you are vaccinating against, than the actual flu/other diease.
One doctor, stated that he recommened the flu vaccine one year post GBS recovery.
I spoke with another Dr. who had GBS and he stated that he was now going to be vaccinated, given this new information. Yet another Dr, who was afflicted with GBS stated that he was vaccinated EVERY year to protect his patients. And that the vaccine changes every year to a completely different strain, so one dangerous in the 1970’s isn’t even used today.
AnonymousNovember 10, 2008 at 12:12 pm
I will come back and give some comments, probably tomorrow, but when I’m tired my hands don’t work well, and they’re not good right now. I got home last night.
I’m going to clear with our foundation to make sure it’s okay to post photo’s.
I wish I could remember better what was said, but I’m a senior citizen and it takes alot of concentration to function when dealing with chronic syndrome.
AnonymousNovember 10, 2008 at 12:55 pm
Penny and I have our turtles on our desks and this morning told each other how every time we look at it, it reminds us of you.
I’m glad you made it home safe….get some rest and we’ll hear from you soon.
I’d said before I met you that I admire you….you can triple that admiration after actually meeting you.
AnonymousNovember 10, 2008 at 1:59 pm
TO ME! Thank you for not being SHY about bringing up these issues.
1]- Why isn’t fatigue considered a symptom? – Hummm. NO definitions… Well, DUH! No defintions are standardized for our PAIN levels [or any other pain issues] prior to and during diagnosis! It all seems to be to be extraordinarily subjective and wholley connected to where the diagnosing doctor was trained and his/her subsequent experiences. They vary very widely to be understated.
However if you extend your search of fatigue to other autoimmune issues from thyroid to MS and beyond, you will WILL find common threads of how the immune system’s assaults to our bodies does cost us in this quarter.
2]- Volunteers for clinical trials? – I for one have tried…twice! But prior conditions I’d had/have excluded me. I guess I’m not pristeen enough for a trial? Other issues relate to if your docs would participate in trials [I know my own do, but not for my condition] or the geographic location of some trials. I check on the ‘trials NIH’ site regularly to see if somethings’ perking? The other aspect is that as one already on IVIG, going into a trial? Might mean that I’d be getting a placebo! Somehow then the status quo seems much more comfy….
I think the effort among Breast Cancer survivors and families to create a history and/or donor pool is a cool idea….Honestly, having both? I at times do think they mite be connected? As good a reason as any?
3]- Hashi’s and CIDP? Well, maybe, maybe not….both are immune issues and I’d had hypo-Thyroid for ages before the CIDP ‘evolved’. About 6 months after my onset tho, my thyroid went whacko and no further testing was done at that time other than changing thyroid meds….. 3 years later diagnosis of Hashi’s was confirmed, but no treatments really changed for that… There mite be some connections, but not one doc really tested for that aspect at all! Frustrating? Yes. This is life? YES!
A really comprehensive survey of such detailed info might be very hard to get from some folks…. Privacy and other issues do intrude. Unless you can cull stuff from insurance actuarials [sp?] These are usually secondary plus issues not primarily related to death [know someone who’s working on this stuffs-scary stuff it is!] How one accesses these folks is beyond me for sure! Likely more interesting? Would be a ‘partner’ survey of CIDP’ers and their Docs to see how each perceives the same questions/answers. That would likely be different in terms per perceptions big time.
I wish I could have gone? But like some critters, I really do NOT travel well these days!
Keep asking questions, please! I for one am grateful that you asked them.
AnonymousNovember 11, 2008 at 8:53 pm
I would like to add that in the session of “Ask the Experts”, one of the Doctors did say that if your GBS was triggered by the Flu Vaccine; you should not get another. Otherwise he said it was O.K. to get a Flu shot after a year of recovery.
Guess you just have to decide for yourself; but since my GBS was triggered by the Flu Vaccine, I will continue to skip the shot.
The Symposium was Great. Met so many wonderful people.
AnonymousNovember 14, 2008 at 5:02 pm
Finally, I had an opportunity to transcribe my notes. As you noticed, though, they are not here. To keep the numbering correct, I had to add them to the original post. Please see that for all of the notes. Sorry for the confusion, but I could not make the forum software do what I needed.
November 14, 2008 at 5:42 pm
Don’t feel bad, I can’t make anything do what I want it to do!!!
Dawn Kevies mom
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