Recently diagnosed with a form of CIDP

[DavidinCA92284]

Hi, haven't posted in a long time, but wanted to share one of my recent diagnoses.  I changed neurologists because the last one didn't want to do any further testing believing that I had typical PN due to either being a long term HIV survivor or due to medications.  The switch to the new Neurologist came with new EMG study that discovered not only problems in my legs, but also in my arms (elbow joints) leading to muscle weakness. 

Another test revealed through a Spinal Fluid sample, 6 Oligoclonal Bands observed, which is associated with a variety of inflammatory brain diseases like MS - but my Neurologist suggests I should only be concerned about the inflammation issue impacting the nerves and loss of myelin - which helps define my case from a general PN case to Chronic Inflammatory Demyelinating Polyneuropathy.

Have any long term survivors on this board been diagnosed with CIDP?  If so, I'd like to hear from you as how you're dealing with the issues of the Chronic condition and if on any treatment for it.  My Doctor has suggested I look into Gamunex-C (immune globulin) and therefore need to also find out from patients that have taken it or are currently on such intravenous process to see how it was tolerated and if there were improvements in physical health.    Also, I'm very interested to see how CIDP patients cope with pain associated with neuropathy.  I'm currently taking both Lyrica and Citalopram for pain management.

[guitargal]

when my pan started i looked up cidp..I had pain events for 2 years.. where it was like electrical impulses of pain surging through my whole body and severe muscle, joint, bone pain…ugh!

 i have not been diagnosed with it (was diagnosed with stage 3 chronic kidney disease and bone loss..damn tenofovir and i was prescribed it for years even with a low eGFR! !)and am interested in following this discussion.

I was told fibromyalgia, some general neuropathy in feet, chronic fatigue, that it was mental..yeah..like i wanted it to happen..duh! quack quack..

best to you! and will follow this.

[weasel]

    Hi David ,
                    I have not been diagnosed with this .

    Are you sure the Lyrica is not causing the issues ?

   I was on Finofibrate for 6 months ,   I was getting weaker by the
   day !
   A few weeks ago I was putting a starter in bob's truck , I was so weak
   I could not lift the starter up to replace it .
   A light went off !  I called my Doctor and told him I was having angina
  and was getting so weak as not to be able to function with daily activites !
  I was taken off  the Cohlersterol med , and I am gaining back my stength .

                                             Just my thoughts ,
                                                                        Carl

  P.S. My spell check does not work 
                                     

[DavidinCA92284]

Hey Carl,
well.............I've been having pain of various types (including spasms and muscle weakness) for more than a number of years.  The only drug that I can tolerate to control about 50% of the pain has been Lyrica.    IF Lyrica is causing my CIDP, it would be news, but I doubt it considering the Spinal Fluid test shows evidence of actual inflammation.   And, just like my AIDS regiment, can't really go off it considering I'd be in too much pain and would be in bed all day without it.   So, don't really know what the answer is, but I appreciate your response.

[wolfter]

What's the long term plan?  Hoping you get some relief.

[DavidinCA92284]

What's the long term plan?  Hoping you get some relief.

Long term plan . . . at first reading this I thought what a great question!  And then my next thought was - how laughable.   That's not an insult to the author, just my reaction to that part of the post.

There is no plan.  No plan from my Primary Care Doctor.  No plan from my HIV Doctor.  And the only plan from my Neurologist is to suggest that the ball is in my court to determine whether Immune Globulin Injections (Gamunex-C) is something I'd like to try considering his diagnosis for me of CIDP.

So, My plan is to see how healthy my heart is in order to actually undergo such IV treatment.  To that end, I had a physical and heart stress test - that revealed some kind of problem with either a nerve not sending signals OR a blockage somewhere.  It sounds like the Cardiologist might recommend an Angiogram when I see him on 3/16.

That puts the nerve condition on the back burner until I can determine what the problem is or not is with my heart/arteries.

[tj]

I have had peripheral neuropathy for a number of years but recently (March) I had an acceleration with increased leg weakness. Mine is a mixed bag of drug effect, HIV itself, diabetes, and spinal stenosis. CIDP among other things in in the diagnosis. Reality is, my neurologist does not know. I'm told we are in uncharted waters and there is no body of science to know what is actually happening.

[DavidinCA92284]

It sounds like the Cardiologist might recommend an Angiogram when I see him on 3/16.

That puts the nerve condition on the back burner until I can determine what the problem is or not is with my heart/arteries.

UPDATE:    Well, I had the angiogram and the good news is be that I have a good heart     So.....the next step for me was off to the Surgeon to determine (from a prior post) about my HPV issues and there appears to be nothing much for him to have done on that score as well . . . except he did remove something probably not significant that didn't prompt him from coming to see me after the procedure.  So, I have a follow up with him in about a week or so for a post-Op.

As far as the CIDP issues, I still have yet to follow-up with my neurologist because of the above mentioned procedures.   A concern for continued follow-up is not so much pain management, but a fear that the weakness could lead eventually to the requirement of a walker or wheelchair some time in the future.  I'd rather be pro-active as some of these Doctors have a wait and see attitude because many of these Doctors are swimming up the same stream without paddles as they don't have any answers - not because they don't want to have answers, but because medicine has not advanced far enough to understand the human body to the extent we, with such conditions, have questions.    I wouldn't mind a "V" Ship to mend my body, living as a human/lizard creature may have good benefits.