Introduction and a few questions

Welcome New Member Check In
1

Hello everyone,

I haven't been diagnosed yet as it's only been five weeks since my first symptom. I assume I have CIDP as my father died from it 19 years ago (hence my user name which is probably a bit ambitious). I always worried I might inherit CIDP, but never truly thought I would. Now it seems like I'm having a bad dream and can't wake up. While I may have MS or another neurological disorder, CIDP is the only one that makes sense given my symptoms. They've been minor to date, but became more pronounced this week. I have an appointment with a neurologist on 3/2 and will push for an EMG, MRI and lumbar puncture asap.

Below are some questions I'd like help with, but understand each individual varies. Feel free to respond to any or all based on your own experience.

1. Are steroids usually the first line of defense followed by IVIG?

2. IVIG is typically administered in an initial five day loading period. Assuming you received treatment before you were too debilitated to drive, were able to drive yourself home after treatment or did you need assistance?

3. I've been prescribed a low dose of Xanax for anxiety. I understand the dangers of benzos, but need it to concentrate at work right now. When I let it wear off, my symptoms seemed to get significantly worse. Is this most likely in my head or do benzos somehow help (e.g. reduced inflammation)?

4. I enjoy exercise, should I continue lifting weights or does exercise contribute to inflammation? I really need it for my sanity and anxiety right now. Also, does stretching help with tight tendons and muscle spasms?

5. I'm a clean eater, but are there specific things to avoid consuming? Alcohol is already off my list as it aggravates my symptoms, but should I cut down on caffeine too? I really love my coffee!

6. Is subacute CIDP (fast onset) typically linear in progression or a snowball effect?

7. I've read interesting things about stem cell research on CIDP. Does anyone know the criteria for acceptance, average wait time and cost?

I'm sure I'll have more questions later, but this is a good start.

Also, I should mention that my father died before widespread internet usage / knowledge sharing. He didn't respond to IVIG loading or steroids so they sent him home without further treatment attempts. I don't want to cause anyone distress by mentioning that he died from CIDP. I think he'd still be alive had he been treated in this day and age.

Even if I'm diagnosed with something other than CIDP, everyone here has my sincere empathy. I helped care for my father during his final year and know more than I care to about this horrible disorder.

2

I can address some of your questions:

1. I was first diagnosed with GBS (which is typical). The first line of treatment for that seems to be IVIG, because steroids reportedly do not work for GBS. When my neurologist changed the diagnosis to CIDP, he first tried me on steroids, which seems to often be the first thing tried for CIDP. (By the way, steroids did not help me at all, and I had to fall back to regular IVIG pretty quickly.)

2. I also had a five day loading period. I was weak from being in bed for five days, but I could have driven myself home if necessary. However, my wife insisted on doing it.

4. I think exercise is a key, and you should do as much as reasonable. This is not because it helps with the underlying CIDP, but because you don't want to lose muscle strength, on top of losing nerve function. I was told, "Exercise to tolerance," which didn't really mean anything to me. So, I asked what "to tolerance" meant, and was told that if I felt bad the next day, it was too much.

5. I have never seen or heard anything that indicates diet has any effect on CIDP. I have asked several doctors about alcohol and caffeine, and have always been told that neither one has any harmful effects.

Good luck!

Bill

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  1. Some have tried an autoimmune diet and have said it cuts symptoms. Worth a try.
  2. CIDP is different for everyone. Some go in a linear progression. Mine personally relapsed and remitted over many years.
  3. I had HSCT IN 2012. I’ve been off treatments since the transplant without relapse. I do have some residual damage but I suffered for 8 yrs before I went. I am very happy with the results. I can do most things physically that I did before- I just have some pain. You do have to try and have failed two therapies before acceptance but sooner you go for it the better. I think if I went sooner I would have less damage. He is busier than when I applied but I’m thinking 6-8 months from application. Start therapy and see how it works. Then after, if you are still having problems, apply and let them decide. My experience, I would go for IVIG first. Steroids have so many short and long term effects. Dr. Burt usually likes to see that his patients have tried steroids though. If you, have any questions about HSCT, I would be happy to answer them. Just email me at ■■■■■■■■■■■■■■■■■■■. PS. Stress amplifies symptoms so I can see how anxiety would make them worse without benzo.
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https://www.aan.com/rss/search/home/episodedetail/?item=2387

Ha, this just keeps getting worse. After listening to this excellent podcast (thanks DazedandConfused) I now know that hereditary neuropathies can mimic CIDP. Perhaps my father was misdiagnosed and that's why he didn't respond to steroids or IVIG. I was just getting used to the idea of CIDP, which is tough, but most people live. There doesn't seem to be any treatments for hereditary neuropathies.

5

Thanks for the sage advice and calming words. I'll quit self-diagnosing and wait for the appropriate test results.

6

Hi Billion
My symptoms started after two bouts of shingles and a flu shot in December. I live in Santa Fe NM where the doctors threw up their hands not understanding me falling and not being able to walk after two months. I tried to get an appointment with Mayo Clinic and had a 2 month wait. My family lives in Dallas where I am originally from. I flew there and went immediately to the emergency room at UTSW where the admitted me and began aggressive treatment. I have now been here for almost 3 weeks and am undergoing 7 Plasma treatments with prednisone IV’s, next week I will start on 5 IVIG treatments. I am also getting PT and OT daily. Then I will go to inpatient rehab. I am getting up and walking with walker but not alone. My biggest challenge is getting up from setting but I am seeing progress. My spinal tap indicates CIDP and we are moving forward with that diagnosis.
My optnion is to get treatment as soon as possible. I am not sure what my future holds but I am determined to walk out of here. We will see, stay determined and positive. I am new to the group but love having the support on this site. God Bless.

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Hi Cgro,

Hmmm. Another case of CIDP after a flu shot, same as mine. I have heard that there are no data proving a relationship, but I have also heard of too many anecdotal cases for this to be totally a coincidence.

Sounds like you are finally getting the right treatment. Plasmapheresis has to go first, because it would remove the IG from the IVIG. So, doing that first is the right order. My neurologist started me with IVIG, and it worked like a charm. But when the weakness came back, and my disease turned out to be the chronic version (CIDP instead of GBS), he tried me on prednisone, because it is much simpler and cheaper. I am one of the people for whom the prednisone did nothing, and I had a bad relapse. Also had plasmapheresis, which worked, but not as well as the IVIG. So, we settled into a routine of IVIG every three weeks, and that kept it at bay. Sounds like your doctor is throwing the whole arsenal at it at once. I can't argue with that. The only concern I would have would be: how do you know what is actually working?

I am also a big believer in rehab and exercise, so I think that is the right thing, too.

You mention the problem with getting up from a sitting position. I really struggled with that, too. In fact, it was one of my neurologist's tests: when I could get out of a chair without using my arms, he knew I was improving! Not the most pleasant subject, but you might want to invest in a raised toilet seat.

Good luck on your treatment, and let us know how you do.

Bill

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RE: "

Introduction and a few questions"

Hee's my personal thoughts, not to be constude as medical treatment suggestions ot advise -simply a starting point:

1. Are steroids usually the first line of defense followed by IVIG?

Yes, unless it is not a single primary disease. All the Neurologist we have met prefer the lease invasive 1st.

2. IVIG is typically administered in an initial five day loading period. Assuming you received treatment before you were too debilitated to drive, were able to drive yourself home after treatment or did you need assistance?

Yes but occasionally, due to airway problems, cannot.

3. I've been prescribed a low dose of Xanax for anxiety. I understand the dangers of benzos, but need it to concentrate at work right now. When I let it wear off, my symptoms seemed to get significantly worse. Is this most likely in my head or do benzos somehow help (e.g. reduced inflammation)?

I prefer a less addictive route. But caution: always check with both your pharmacist and Docs 1st. Found that at bed time GABA, LTheanine and biphasic (immediate and time released)Melatonin helped more than narcotics.

4. I enjoy exercise, should I continue lifting weights or does exercise contribute to inflammation? I really need it for my sanity and anxiety right now. Also, does stretching help with tight tendons and muscle spasms?

Moderation. Incorporate balance exercise especially where you challenge you sight, inner ear and muscles. (Example: close your eyes and have two pointing fingers gently resting on sink and try to balance without the fingers touching the counter)

5. I'm a clean eater, but are there specific things to avoid consuming? Alcohol is already off my list as it aggravates my symptoms, but should I cut down on caffeine too? I really love my coffee!

13-USDA2.jpg752×614 63.7 KB

All but air chilled chicken. 90+% of even the “all natural range fed “ are dunked in cesspool chlorine tanks. They stopped using a less amount in indoor swimming pools because children were getting 400% increases in Nasopharyngeal cancers.

Only wild fish. Farm fed has very low if any Omega 3 and inflammatory chemicals from the man-made feed.

Grass fed meat (entirely grass–not grain/corn finished –most meat labeled “Grass fed are really corn finished to gain weight - corn expecially GMO can be very inflammatory SEE* https://www.youtube.com/watch?v=yiU3Ndi6itk

Organic vegetables ESPECIALLY potatoes -90% less checmicals.

6. Is subacute CIDP (fast onset) typically linear in progression or a snowball effect?

Dr. Ruts in his paper titled “ Distinguishing acute-onset CIDP from fluctuating Guillain-Barre syndrome: a prospective study.” Stated :

The diagnosis of acute-onset chronic inflammatory demyelinating polyneuropathy (CIDP) should be considered when a patient thought to have Guillain-Barré syndrome deteriorates again after 8 weeks from onset or when deterioration occurs 3 times or more. Especially when the patient remains able to walk independently and has no cranial nerve dysfunction or electrophysiologic features likely to be compatible with CIDP, maintenance treatment for CIDP should be considered.

7. I've read interesting things about stem cell research on CIDP. Does anyone know the criteria for acceptance, average wait time and cost?

Yes: I believe you're thinking about Dr. Burt’s clinical study, seems to have excellent results but very invasive: https://clinicaltrials.gov/ct2/show/NCT00278629


9

1inabillion,

Relax, (">)

Welcome to this place.

Take awhile and read a bunch of the old discussions here. You'll find that all of your questions have probably been hashed around. And, as has already been mentioned, you'll find almost as many answers to your questions as there are members here.

But, I said to relax because one thing we all universally share is that we need to minimize our stress. Stress doesn't do anyone any good, but I suspect we need to avoid it more.

I'll take a stab at two off your list:

1. Steroids are very effective against CIDP because they fight inflammation. Not for everyone, of course, but probably most. Side effects ...yeah. I can live with them, for now at least. A little fat around the waist because of increased appetite, and a little crankiness, that's all.
Certainly nothing like those stupid legal disclaimers you see on television drug ads. You know, the ones that say "So ask your Doctor if_ _ _ _ _ is right for you" right before the fast talking guy tells you all of the horrible, disgusting things that their drug might do to you.

IVIG had no measurable effect on the progression of CIDP in me after the loading doses. Plasma pheresis did ( one series of 7 treatments), then on to the steroids and cellcept.
Do not overlook steroids as an effective way to get your life back. They are effective and cheap, dirt cheap compared to almost everything else.

4.Exercise is essential.This disease, by limiting the flow of instructions flowing to the muscles causes weakness and atrophy. Just the atrophy alone can be debilitating. By the time I finally got a diagnosis and began treatment, There was no more muscle left on my frame. I was so weak and atrophied that I could not overcome the gravity that pinned me to the bed. With my elbow on the bed, my biceps could not curl my forearm off the mattress. It was (still is) a long fight to regain my former herculean strength and stunning physique. Well, ok so I have a good imagination.

I swim laps 3 or 4 times / week at the YMCA, and lift weights at home. I believe in doing compound exercises with free weights, because of the way they involve all of your muscles, not just the big,main ones, but all the little balanceing muscles that are so important. Just squats, deadlifts, presses and rows are all I need.

BUT!!! I urge you to be very cautious with exercise until you get a diagnosis and begin treatment.

My hospital (neuro floor) immediately started me on physical and occupational therapy even before they figured out what was wrong with me, let alone began treatment. I was then, and am now, convinced that that did me no good, in fact, it wore me out faster. By that point in my progression, the CIDP was progressing so fast, that every day I was weaker than the day before. The exercise,at that time, seemed only to make it worse.

AFTER getting my diagnosis, Plasma Exchanges, and starting on prednisone, it was completely the opposite. I told the therapists to work me hard, and I was literally soaked with sweat after each therapy session. It is a long fight to regain lost muscle tissue and muscular strength, especially in your 50s, so yes! try to keep as fit as you can while you still have it. I think it will help you fight it and will make your recovery faster. Again, I just caution you against getting fatigued until you have begun treatment and the nerve damage is being slowed.

Best of luck in your new journey! I am curious about your Dad ~ his symptoms and treatments. I was given a fatal diagnosis twice before going to Mayo and getting a 2nd opinion and CIDP diagnosis.

Perhaps there is something in his history that can shed light on your condition.

Stay in touch, and remember to r e l a x and keep smiling. Life is Good!

10

RE:"

Best of luck in your new journey! I am curious about your Dad ~ his symptoms and treatments. I was given a fatal diagnosis twice before going to Mayo and getting a 2nd opinion and CIDP diagnosis.

Perhaps there is something in your history that can shed light on your condition."

Yes, genetics, via the Genome project, are being looked into: If interested your Doc will have to agree and you could help move it along by filling out the following form, f he approves:

http://rarediseases.info.nih.gov/files/NHGRI-2%20Undiagnosed%20Diseases%20Program-%20Physician%20Letter.pdf