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Living with Polyneuropathy CIDP, GBS, & CMT

Unique CIDP! Help


#1

Hi. I’m new here. I’ve had CIDP for over 5 years, caused by my Mixed Connective Tissue disorder. It attacked my brain, and the Peripheral Nerves leaving me with muscle weakness and sensory problems. I have tried many different types of medications, but none have helped. I have debilitating paraesthesias (pins and needles, numbness, electric shocks, burning sensations) all over my body, which have intensified over time. I can only take Lyrica, since I have a very unique symptom: the paraesthesias get worse with EVERYTHING I eat, drink, or whatever is in contact with my skin, or the whole body!! I started with Ciclophosphamide nine months ago, but it hasn’t helped. I want to suggest to my reumathologist if I could try Ivig, since I’ve read that it helps with sensory neuropathies. Please, I wish to hear options from members of this group with a similar sensitive CIDP if Ivig has helped them, the doses received and any other options available for patients with similar symptoms. I’ m really desperate! Thank you!!


#2

Hi Lili,

Welcome :slight_smile: We’re glad you have joined us. I did a search through existing discussions and only found one member saying they have mixed connective disorder. It is here at the very bottom of this thread. If you read from the top, I think he talks about his symptoms and treatment as well. Maybe it will help?

Does anyone else have paraesthsias from their CIDP and how are they treated?

CG


#3

Thank you very much, Canadian Girl!!

Enviado desde Yahoo Mail con Android


#4

So very sorry to hear about your condition. I have CIDP without and connective tissue complications. I have been receiving IVIG for 4 years (had symptoms of the disease for an additional 3 years, but wasn’t diagnosed). I get 45 grams of IVIG every other week. Fortunately the disease has not progressed. I do have Raynaud’s, but never assosiated it with my CIDP.

I suggest you investigate your case with the Mayo Clinic. They are the leading institution regarding your condition.

Hoping the following link will be helpful. Hoping you find some relief. Try IVIG, worked for me with no adverse side effects.
http://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/basics/causes/con-20026515
Ron


#5

Hi lili, I have neuropathy like you describe, non length dependant (meaning it’s everywhere basically) small fibre neuropathy. I have burning everywhere and pain when anything touches skin, also issues with certain things digested making it worse.
I tried ivig, had two lots of 5 day infusions. I didn’t feel worse but didn’t feel better. Still the question as to whether that was long enough. I have alot of other issues now as it’s progressing but i don’t have a clear diagnosis.
If they believe the problem is autoimmune /inflammatory then ivig is definitely worth a shot for this. Is your diagnosis pretty solid? Do you have large fibre involvement?


#6

Hi Ron. Thank God , your disease hasn’t progressed. I already talked to my rheumathologist about trying Ivig. I hope it can help! Since I live in Venezuela, I am going to start the treatment here , while I make the appointment at the Mayo clinic.Thank you !
Lili


#7

Hi Joanna, It looks like my CIDP is similar to yours! I have visited many doctors, until last year, a rheumathologist ordered many tests and came with my definite diagnosis , and that it was caused after the immune system attacked my brain, together with the Peripheral nerves, leaving me with CIDP.My diagnosis is clear now.Sorry, but what does large fibre mean?


#8

Hi Lili,

I’m not an expert on this at all, I just understand that damage to larger
fibre nerves cause issues with mobility. If the process is demyleinating
then I understand it’s cidp. I imagine there must be other variations of
cidp though.
Are you in the USA?


#9

Hi JoannaSorry for not getting back to you sooner. I’m not in USA. I live in Venezuela. I would like to try Ivig, but due to the difficult situation we have in the country right now, I don’t know if it’s available. I don’t know if you are aware of what’s going on here?My disease is demyelinating and it has also progressed, only the paresthesias. At the beginning, everything was affected, the autonomic, sensory and muscle part. With time, everything got better, except for the strange sensations, which are driving me crazy, stopping me from Iiving a normal life!


#10

I have much of the same Lili. I have very bad autonomic dysfunction now,
small fibre damage everywhere, which causes severe burning, parasthesias,
and I have wasting and weakness. My nerve conduction and EMG test has kept
coming back clear so they tell me that the shrinking is lack of use. It is
not that at all. So I’m just left to get on with it. I want a second
opinion so am waiting for that.

No need to apologise, I completely know how it is. I hope you are not too
young as it’s sad when this happens so young. It’s still horrible whatever
age, I’m not denying anyone of that.

Yes I understand the economy has collapssd causing significant problems for
all. I can see how accessing the best treatment could be so difficult at
the moment. I hope you are still getting some medical expertise/access to
doctors?


#11

Hi Joanna
I Still have access To good doctors, eventhough many have left the country. It is very difficult to find medicines, but my brother brings them for me. I visited my doctor last week, and he insists on keep on trying with Ciclophosphamide . He doesn’t​ think Ivig will help in my case, but I would like to try it.Do you remember what was the dose of Ivig you received and how many times a month? And also, if you happen to know the type of Ivig, since it seems there is Ivig G, and other letters? Thank you!


#12

Hello Lili,
I’m sorry that your going through this. I have much in common with your symptoms and diagnosis. I also have CIDP and now they think its caused from CMTD as well. I’ve been told for years its cidp with either lupus or Ms as the underlying cause but recently had a positive ena tests saying “results are most consistent with a diagnosis of cmtd.” I have been waiting for ivig treatment for years! Everytime I am going to start they hault it and send me for more testing. I am showing progression each time. I feel the progression happening. I have days where my legs are so weak and I am falling, just the air touching my skin is excruciating never mind a shower on those days, as it feels like razor blades slicing down my body instead of water. I feel like the doctors dont care and I am nothing but a lab rat to them. I have so much wrong with more and more problems popping up each visit to the Doctor’s. I now need major neck/spine surgery. In my c4 to c7 I have a terrible bone spur that is rubbing on my spinal cord. I’ve been told a fender bender or if I fall the wrong way it will sever my spinal cord and I’ll be a paraplegic. I am terrified to do anything now! All they are doing is pain management (not well at that) and tests, tests and more tests. I need treatment. Ugh. its been 14 years of test. I am in Canada and it takes forever to get into Doctors (over a year) and up to 8 months for some of these tests. I’m being tested for sjogrens syndrome now tòo.
Oh my goodness! I apologize for my pity party rant! I can commiserate with the lack of treatments/pain management. I have been having extreme heaviness and fatigue in my arms and legs which is scary. I am afraid I will wake up one day unable to move. Breathing is becoming an issue, I feel like I’m suffocating most days. I am 36 and need to figure this out as I have 3 young kids I need to get better for. I hate these diseases they are frightening.
I wish you the best and that you are able to start treatments soon! I am sorry I dont have any answers for you as I am looking for them as well. Have a wonderful day.

Nicole :slight_smile: