Autonomic Issues with CIDP?

    • Libby
      December 6, 2015 at 10:04 pm

      Hi all. Newbie questions here.. I’ve only recently been diagnosed with CIDP. However, I started off 2 years ago with a pretty severe postural autonomic disorder (POTS = Postural Orthostatic Tachycardia Syndrome) after a virus. I did have some associated bilateral arm and leg weakness but this was more related to standing for too long. However, the leg weakness, decreased ankle jerks and significant leg tremors have lately ramped up, hence the new diagnosis by the Neuro.
      1. Has anyone else had this pattern of progress? Most of what I’ve read has been related to peripheral nerve issues, not autonomic problems. So, I guess I’m still a little unsure if this is the correct diagnosis. I also get gut, bladder, eye problems, as well as dry eyes and mouth (negative for Sjögrens tho).
      2. I’ve been taking mestinon for leg and arm weakness for the last 18 months and it does make a difference overall. Given that it’s an acetylcholinesterase inhibitor, how does this help with a demyelinating process?
      3. I’ve had 3 lots of IVIG and it seems to have helped the POTS somewhat, but not the leg and hand weakness. Any thoughts??

      Many thanks, brains trust!!
      Libby

    • jk
      December 8, 2015 at 9:33 pm

      Thoughts, in no particular order-

      1. I was given Mestinon on a trial basis by Cleveland Clinic Ohio. It made absolutely no difference in my condition.

      2. you have defined what Mestinon is. It is used in the treatment of Myasthenia Gravis a condition not similar to CIDP. The difference has to do with where the immune system attacks what. Therefore, what the Mestinon treats will likely not help typical CIDP demylination at all. If you haven’t already, visit this site-

      http://myasthenia.org/WhatisMG.aspx

      3. some doctors, considered experts by others, have stated something like this, ‘…if IVIG helps you, you probably have CIDP. think back. How long have you had “decreased ankle jerks” by this I thought you meant absent (or weak) deep tendon reflexes. Long time damage takes a long time, if ever, to repair.

      4. One NIH study sums up with …”Moderate to severe autonomic deficits in a more widespread distribution (CASS ≥4) were not found in our CIDP series. When present, concern for an alternative diagnosis should be raised….”

      here- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3306161/

      And, their conclusion repeats with this final sentence: “Extensive or severe autonomic involvement (CASS ≥4) in suspected CIDP should raise concern for an alternative diagnosis.”

      I was thoroughly tested at least twice at Mayo Clinic’s Rochester, Minn Autonomics Lab. All results were negative.

      Strive for some 2nd and 3rd diagnoses. Recall the TV show Medical Mystery. some conditions are rare as well as misunderstood.

      Good luck.

    • Libby
      December 10, 2015 at 12:28 am

      Hi Jk,
      Thank you so much for taking the time to respond. Hmmm.. well, I just plain don’t know. I agree with your comments as to maybe/maybe not CIDP. I’m actually wondering if I’ve got a couple of things happening, hence the confused picture. Meanwhile, tho, mestinon has been found to help with general weakness associated with autonomic dysfunction, not just MG and I have done better on this and florinef than without.
      However, the weakness in the upper and lower limbs has been variable and originally, seemed to be worse with postural-related issues ie when I stand too long, my legs give way and I drop things and the mestinon helped somewhat with that.
      Meanwhile, in the last 12 months, the weakness has been increasing and not related to positional demand. Physios have reported weakness in leg and hand muscles along with some decreased sensation, but these are progressing particularly in the last 6 months. The absent ankle jerks only started a few months ago despite starting IVIG. So, shrugs… I’m totally confused. Meanwhile, though, the foot burning and leg weakness can be really well (tho temporarily) controlled with dexamethasone (short course – 3 days), so this seems to reflect a definite auto-immune response!
      I know it’s hard for you to say, but, I gather you don’t think this fits the usual CIDP picture? Any thoughts about other AI conditions eg Sjögrens, AAG??
      Cheers and thanks again.
      Libby

    • billwhit1
      December 16, 2015 at 10:47 pm

      Hey
      Absolutely. My BP goes crazy. I get meds then when I take them BP dives, meds stop and it goes to the roof. CIDP and MS are sisters. Gross failure of the immune system. CIDP/GBS cells attachk outside the cord and MS within. I have all the MS symptoms except scars on the brain and cognitive problems. Anyone who has eye problems can find out where the 8,9 10 whatever nerve in the base of the brain is being damaged by your own immune system. My neuro id the nerves that cause eyes to malfunction and we see double. I had the eye surgery after 15 years of no CIDP. One year later CIDP and my eyes see double again. Ahhhh, when will it stop!

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