Stopping Trreatments?

General General CIDP Discussion
1

I spoke with my neruo 2 weeks ago after going through several rounds of IVIG over the past year with side effects that he did not feel out weighed the benefits now, and I agree, he wants to stop those. In the beginnig, the treatments allowed me to lift my leg, (my right was worse) to climb stairs whereas before I could not. Now, my legs are beginning to have that heavy feeling, and I find myself fighting to not "shuffle" as I walk. Also, the one thing that really bothers me is that prior to IVIg, I had what I call the "tuning fork" affect in my feet and lower legs but since IVIG it has moved to my hands and the way that it did so seems directly related to the treatment. It is in my hands, forearms, etc. As well as my feet, legs.

So, he said, when we met, that he wanted to start plasmapharesis in conjunction with chemo. But wanted to wait a month or so. Meanwhile, my symptoms, while not plummeting to the bottom of the earth, were worsening. Since the heart thing, below, he has decided to not do anything for a while and wait. ahem.

Then this heart thing last week. I wore the holter monitor after fighting to see a cardio guy, he found me to have potentially fatal ventricular tachicardia (V Tach), and a lot of it, over 48 hrs. Hello. I have been telling them my heart was skipping ta loo for a LONG time and I would feel faint. But, they put me into CCU immed, did a cath, ruled out any form of blockage, or disease. It was due to electrical issues. You got plumbing or electrical, mine is electrical. They tried to ablate my heart on the outside where they could see the origination of the problem, at the top right in the crease between the atrials. He fired 59 times. Could not stop the V Tachs. I now have a lovely device the size of a Maybeline compact implanted in my chest for life under my collar bone with a lead into my heart that not only serves as a pace maker as a first line of defense against these deadly arythmias but then goes on to the full monty of "clear" and kicks me in the chest like a mule (the drs. term). I supppose it will knock everyone in the checkout line at the grocery store down like dominoes cause Mama is going down. I have to hunt a seat when the beats start but that ain't always available and if I just sit down at the DMV in line, they are gonna be "whose your daddy?".

So, the cardio guy, when I asked, said, unequiviacably that he believes this is CIDP. The fear of what next hit me. The autonomic nerve system is comprise of delicious things that are just the mack daddy of things to render me dead.

I did not get many comments before, and may not now. If so, well, think guys. This is serious. When I confronted my neuro, who is the nicest guy in the world, and did not disagree with the cardio, he said the likelihood of this going to my diaphragm is like almost zero. Almost does not cut it for me today. Sorry. Just like 10% of the ppl with calcifications in their breasts have it be cancer and ppl with calcifications that look like yours? fuhgetaboutit. Why yours are well rounded and spaced apart, go home, take a valium. My little rounded thingys were high nuclear grade three cancer with comedo subtype, the worst you can have. So, almost makes me sick. I had to fight to get to the cardio guy.

Where is a clinic anyplace in this country (US) that specializes in CIDP or in autonomic issues. I already have gastro, heat regulation and now heart.

I am more than uncomfortalbly numb. I am becoming panicky.

2

I am not a doctor so make sure you ask him before you do any of this.

My Nuero just dumped me a few days ago since my first IVIG treatment went so badly and made me a lot worse then I was before it. He is sending me to UT Southwestern Medical Center. If you have a ability I would see if you doctor can get you referred to a place like this. They are on the cutting edge of research and you don’t get treated by one doctor you get a team. So if your doctor is not really sure what’s going on there is a good chance they can figure it out. I also change my diet to a vegan one and let me tell you it sucks really really bad at first but after a few weeks I felt allot better, and I have never seen a unhealthy looking vegan. Have you tried acupuncture ? I have read a few post on forums and blogs that said it helped some it may be a way to help keep things working till you can start treatment again.

I don’t even want to think about how much this must suck for you. And I hate the only thing I can do is offer up some options to talk to your doctor about I wish I could do more. The good thing is you still have options to try and there is a chance they will make all the difference in the world.

Here is a like to the GBS-CIDP Foundation center of excellence.

http://www.gbs-cidp.org/home/get-support/centers-of-excellence/

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No, you offered something and that is a start for me. I have a B12 deficiency so a vegan diet would not be a good choice for me, possibly. I give myself an IM shot twice a month as it is. But, Good Lord, my diet sucks! It was, however, comforting to know that I have a very healthy heart. That was about it. I was treated for MS by another Neuro at the same hosp for four years and that was time lost.

One thing that this neuro said that I would like to get some opinions regarding.

He said: A lot of neurologists would not have treated you for sensory loss, which is what you have experienced with the numbness of your feet and hands and the total loss of your reflexes. I am not in agreement with that treatment plan. I feel that it should be treated but for the time being, let's wait and see what happens. You still have strength in your hands and legs.

Huh? As I understand this, waiting is the worst thing. The sheaths are being attacked and if our immune system is not put on hold from doing this, side tracked from doing this or whatever thing happens when we take our treatments, it progresses to the actual nerve and permanent damage. The idea is to treat to NOT lose the strength, not to progress to the loss then treat.

Am I off here? If you have lost all reflexes, cannot differintiate between cold and heat, are numb in your feet and hands, your feet feel like you are always wearing socks or that they are banded, you cannot lift your legs to climb stairs very well, you are using your arms to do so, with the loss of your reflexes, you fall easily and cannot break the fall, you are dizzy, nerve conduction tests are proof positive that you have neurophy, No Doubt, your protein is elevated to 123 in your lumbar punch, what are we doing?

4

I am not sure what your doctor is thinking, maybe he is not sure if the treatment will do more damage than good. My IVIG treatment made me much worse but it could just be how it was giving to me.

I would start calling some of the places on the list in the link I gave you and see what they can do for you, make sure you have a your medical info. You may or may not need to be referred by your doctor, I had to be but that does not mean all of the places are like that.

As far as the diet goes see if you can get a nutritionist to do a meal plan for you that way you don’t have to try and figure it out all at once and you can take your time and learn but be eating great meals till you do.

5

My heart goes out to you. One thing that is very clear to me reading all this, is that the medical fraternity have not yet got CIDP under their belts. There is a lot of guessing going on and the variables within each one of us certainly does not help their diagnosis.

I agree with Jast and would suggest that you investigate each and every avenue you can. Remaining proactive helps us to not fall into dispair. I wish I can give you a BIG HUG right now, know that there are many praying for you.

I have not yet had IVIG, as my medical aid have refused it for the third time so now it is with the big guys with the big cars to decide "my fate". I am however trying something very new for me. I am seeing a 'genetisist' today and am hoping that they through my 'genes' may be able to direct me on the corrct path of medicine required.

Maybe this is an avenue you can look at.

6

Wow, you really have been through a lot. Did you talk with the neurologist about your fears of not doing anything for one month. I think you should consider this first. CIDP can cause cardiac problems. I would definitely put it up front with the neurologist you are seeing. If he is a really nice doc, he should work with you. Otherwise, try one of the centers of excellence suggested above. Problem is always insurance, therefore I would really work with who you have.

7

Dear Uncomfortably,

Sorry to hear about your CIDP difficulties and other problems. I had evaluations of my autonomic nervous system performed twice, most recently in 2009 at Columbia University Medical Center in NYC by the Director of the Clinical Autonomic Laboratory, Department of Neurology (see: www.columbiaemg.org). I first had autonomic evaluations performed about a decade earlier because of my diabetes. The tests were nearly normal then, but now the results show mild and/or moderate autonomic dysfunction. While the results are interesting, nothing useful has come out of this testing. This testing didn't establish whether my autonomic neuropathy is due to diabetes or to autoimmune disease. The only conclusions resulting from the autonomic evaluations are that I should try to control my diabetes and my autoimmune diseases (which my doctors and I would be doing in any event).

I suggest that you ask your current or new neurologist about whether autonomic testing would be beneficial. He may say that if your tachycardia and nerves leading to the diaphragm are affected by CIDP, the remedy would be to better control your CIDP, which seems like your top priority. I'm concerned that stopping treatment has many risks including secondary axonal neuropathy (which, unlike demyelinating neuropathy, is irreversible). Assuming your doctors think it's safe to start treating your CIDP again (e.g., plasmapheresis and/or chemotherapy) that seems much more important than autonomic evaluations.

Good luck,

Jon

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I'm sorry this is happening to you. There are cidp nero specialists available online at gbs/cidp foundation to answer questions like this. Start there for a quick response to what options there may be. Please let me know how that goes. In Chicago there is Dr. Driss, Dr. Allan. I can be wrong but I've heard that plasmapherisis is effective at the onset of CIDP. Used when it's dx early. Have you taken solumedrol w/ ivig. Ivig is sometimes not enough on its own.

Mabes

9

Hi, I am sorry to hear of the progression of symptoms, the central nervous system involvement and cancer. Whew, that is alot! I too have CIDP and have had palpatations, but have not as yet had it looked at. Did you have chest pain along with feeling faint! It may be that Shands in Florida (Dr. Berger) could be of assistance.

I hope you can find someone good to treat this complication, let us know what you learn.

Thanks Roy

10

UncomNumb, First, some deep breaths. My heart, while ithas has some palpitayions, I think is still ok. like you, I have had to deal with more than one illness at a time and my heart breaks for you. Did your neuro give a sound reason for wanting to stop your treatments? It may be thatthe heart problem can be a symptom of the disease but also a symptom of the treatments. I wouldsimply ask him to explain to me why he felt that stopping treatments was the safest action for you. We here can sympathize and tell you of our experiences but we aren’t doctors. Does your cardiologist feel certain that heart issue is directly connected to CIDP? Could it be the treatment? Coukd it be the chemo as well? Pls keep us posted on what route you decide to go. It is never, ever a waste to get a second opinion. id I hadn’t, I would still be watching first neuro shake his head and say “it seems like you have diabetic neuropathy but you don’t have diabetes”. Now, I am doing a little better. Much love to you, jo

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JonJ said:

Dear Uncomfortably,

Sorry to hear about your CIDP difficulties and other problems. I had evaluations of my autonomic nervous system performed twice, most recently in 2009 at Columbia University Medical Center in NYC by the Director of the Clinical Autonomic Laboratory, Department of Neurology (see: www.columbiaemg.org). I first had autonomic evaluations performed about a decade earlier because of my diabetes. The tests were nearly normal then, but now the results show mild and/or moderate autonomic dysfunction. While the results are interesting, nothing useful has come out of this testing. This testing didn't establish whether my autonomic neuropathy is due to diabetes or to autoimmune disease. The only conclusions resulting from the autonomic evaluations are that I should try to control my diabetes and my autoimmune diseases (which my doctors and I would be doing in any event).

I suggest that you ask your current or new neurologist about whether autonomic testing would be beneficial. He may say that if your tachycardia and nerves leading to the diaphragm are affected by CIDP, the remedy would be to better control your CIDP, which seems like your top priority. I'm concerned that stopping treatment has many risks including secondary axonal neuropathy (which, unlike demyelinating neuropathy, is irreversible). Assuming your doctors think it's safe to start treating your CIDP again (e.g., plasmapheresis and/or chemotherapy) that seems much more important than autonomic evaluations.

Good luck,

Jon

Thx for the info Jon. I have learned that I had some of my preformed info regarading autonomics wrong. The diaphragm is not part of autonomics as I thought previously. Some of my panic eased a bit. I was thinking if it is controlled by a smooth muscle and nerve that you do NOT control conciously, then it fell into that category, but I had it wrong. It is SO much more than that,.

My cardiologist, the one who implanted the defibrilator, said that he definately feels this is autonomic. When I relayed that to my neuro, he did not dispute that. I have not had chemo yet, only IVIG and solumedrol. The next treatment that the neuro plans to use would be plasmapharesis in conjunction with chemo. His theory, though, regarding sensory loss vs loss of strenghth made no sense to me. So, I can kick a bucket across the street, but not feel it when I do it? Well, I could not kick it because my leg feels too heavy, but the strength is there to push a pedal that would activate a device to kick it. I have the strength in that regard, both legs and hands, as well as arms, at this time. My arms are a bit weaker. But, my legsa are hella weaker, and worseninng, in regard to lift. If I had to run for my life, I would die.

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Hi Mabes, yes, I have taken solumed, 1000 at a time, infused, three days in a row, for a total of 3000, and received no benefit from it except to lose my mind close to thirty days. That was all.



mabes said:

I'm sorry this is happening to you. There are cidp nero specialists available online at gbs/cidp foundation to answer questions like this. Start there for a quick response to what options there may be. Please let me know how that goes. In Chicago there is Dr. Driss, Dr. Allan. I can be wrong but I've heard that plasmapherisis is effective at the onset of CIDP. Used when it's dx early. Have you taken solumedrol w/ ivig. Ivig is sometimes not enough on its own.

Mabes

13



cosmo said:

Hi, I am sorry to hear of the progression of symptoms, the central nervous system involvement and cancer. Whew, that is alot! I too have CIDP and have had palpatations, but have not as yet had it looked at. Did you have chest pain along with feeling faint! It may be that Shands in Florida (Dr. Berger) could be of assistance.

I hope you can find someone good to treat this complication, let us know what you learn.

Thanks Roy

Hi Roy,

No, I did not have chest pains, just felt faint when the palpitations and or skipping would start. I would feel like my breath would catch also. When they implanted the device I had chest pains for a week, fairly constant, so I now know what angina or a mild heart attack feels like, and was able to learn under a theraputic condition, pretty cool. I have a healthy heart, and truthfully, I am really lucky that all this happened this way. Who knows how many ppl just drop dead with this.

I have to say that I have a sneaky feeling that there is more going on with me than has been diagnosed. I really believe this.

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How are you feeling?