Can someone assist me?

    • Anonymous
      October 27, 2012 at 5:30 pm

      Hello everyone.  I realize there are a hundred conditions that have similar symptoms to CIDP.  My story is a long one, but I will try to keep it short and I hope some of you can comment as to whether you think this is what I am facing.

      I was put on HIV Post Exposure Prophylaxis medications in February for an exposure to the HIV virus of an infected person.  The medications are known to be very toxic, cause blood diseases, and numerous other conditions when taken long term.  The course is 28 days, and it worked.  8 months later I am HIV negative.  However since popping the first 10 pills on day 1, I have been dealing with concerning symptoms.

      I encountered a fellow who has become the poster boy for long term toxicity from short term HIV meds.  He developed Sarcoidosis from them.  In my discussions with him, he mentioned that he had spoken to many others experiencing my same symptoms, and they were ultimately diagnosed with GBS.  I think maybe CIDP would have been more accurate, as their problems extended over many months.  Nothing too acute.

      That being said ….

      After finishing the medications, I was hit with a bout of weakness that literally buckled me over, on the spot.  I was sitting in my car, and suddenly felt crawling/painful goosebumps come in wave after wave, rolling over my body.  Simultaneously a sensation of sever muscle weakness hit me as I sat there, and I literally bent forward from the fatigue.  I felt like I had a 50lb weight on my shoulders, and my thighs felt like they no longer could hold me up.  Within a few hours I developed a very strange, irritated, enflamed, aching, painful and swollen feeling in my armpits.  Like I had baseballs there, but I could feel no swollen glands.  It was sensory and muscular.  My skin developed a sensation of “scaly-ness” and tenderness though there was nothing visual aside from noticeable redness in my various skin folds.  Profuse sweating.  Weakness.  Fatigue.

      This was my first bout of …. who knows what.  But it lasted a solid week or so.  Blood tests were all normal.  But I felt like i was being crushed.  After a month of relieve, i was hit again with the same thing.  And then again a couple months later.  Everything from MS, to Diabetes was considered, but MRI, and blood glucose all normal.  Whatever these medications had done to me, it was messing up my lifestyle.  For the most part I was okay.  But unable to exercise at the gym anymore.  Noticeable weakness.  Any drinking would lay me out for a solid week with a hangover, and usually trigger another attack.  Crawling sensations, extreme weakness.  Depression for no reason. …

      Then in September I began having muscle twitches.  First fingers and thumb, then elbow, then all over my body.  Mostly small muscle spasms, no major tremors.  Nothing like Parkinsons.  Just a clear indication that my nervous system was malfunctioning, and this was the next stage.  Within 1 week I developed aching and pain in my left foot, pins and needles, and just this sensation of “SWELLING” and “BURNING” to the point that I couldnt wear my shoe when driving my car.  I even had the AC blowing on my foot down there.  In the shower my foot would burn despite only warm water.  My hands developed severe cold sensitivity.  Holding a cool bottle water felt like touching an ice cube, and hurt.   Then i started wondering about Renauds.

      The muscle spasms continued and advanced to week 3.  Woke up with my left calf literally spazzing out, jiggling and shaking, followed by a TIGHT wrenching knot …. that held for nearly 24 hours before releasing.  Walking became uncomfortable.  I cant walk around the store for more than 20 minutes or my left foot feels like its so full of blood its going to explode.  My calf muscles feel like they have marbles rolling around in them all day long.  My thigh twitches, my scalp twitches.  And I will have other random nervous system malfunctions like the feeling of a knife stabbing my finger in pulses, for a period of 20 seconds.   Then go away.

      And then the weakness hit again.  With the crawling sensations and unexplainable chills/goosebumps.  I have severe migraines that feel like swelling in the front of my head.  Pain up and down my spine, mostly near the top.  Aching and pain in spine neck and head.

      I have had an MRI of my brain, neck, and spine, and no MS related lesions have been found.  No MS.
      I have had an EMG and a Nerve Conduction test but both show no abnormalities.  No ALS.
      I have been tested for Lyme and came positive on Antibody but negative on PCR and Western Blot.  No Lyme.
      I have been tested for Diabetes, Thyroid, CPK, Electrolytes, Vitamin imbalances, ANA.  All normal.
      Only thing that came back abnormal was low Testosterone and high IGF-1.

      Having spoken to people who took these HIV medications who remain unwell afterwards, and having entertained every disease in the book, I am currently settling in on CIDP.  I would have just let this go if I was not now having muscle spasms and neuropathy all over my body.  While all of this is mild, i am concerned that something is slowly damaging my nervous system, and I would rather be proactive than do nothing.  Especially when I read that treating something like CIDP early can improve prognosis. hey say if its been less than a year, chances are good.

      At this point both my Neurologist, my MS specialist, and my Infectious Disease doctor have thrown their hands up in the air and sent me home “Perfectly Healthy”.  Only one of them (The Neurologist) has deemed this “Long term Toxicity from HIV Medications”.  He may be open to CIDP but I can’t get him to reply to any emails.  I think he too is done with me after the clean EMG and Nerve Conduction test.  I was diagnosed after my second “attack”.  The doctor told me I had “Some sort of lymphatic inflammatory condition” and she hoped it would fade with time.

      Can any of you comment on what I am experiencing and let me know if anything sounds reminiscent?  Please keep in mind that several others who took these meds have been definitively diagnosed.  That is the only reason I am entertaining GBS / CIDP at this time. I really need a doctor who will take me seriously in the South Florida (or anywhere I could fly to) area, and at least help me rule this out before I pass my window of treatable time….

      Thank you.

    • October 27, 2012 at 7:05 pm

      I’m very sorry to hear you are going through all of this. Your symptoms sounds like CIDP but could be many other illnesses too.

      If I were you, I would contact the National Institute of Health (NIH). They are the people to go to for rare diseases.  Or I would contact Mayo Clinic. The Mayo in Minnesota has a neurologist who is a leading expert on CIDP. His name is Dr. Dyck & people from this forum have seen him & I believe they have all liked him very much.

      Have your MRI’s been done with & without contrast? Have you had a spinal tap to check for elevated protein?


      Link to NIH:

      Link to Mayo:




    • Anonymous
      October 27, 2012 at 7:26 pm

      I have requested Spinal Tap from both the Neurologist and the Infectious Disease doctor but the first hasn’t replied, and the second said “No”.   Reading other stories on here, I guess I don’t see a lot of correlation with my symptoms.  But I am also getting on top of this very quickly.  I don’t see much logic in waiting until I wake up one day paralyzed or blind.  Unfortunately the medical system doesn’t know what the word “Proactive” means, so any requests or suggestions that we continue to try and figure this out are met with an “I have better things to do” attitude from the doctor.

      From what I am reading here, clean EMG’s and clean Neuroconductive tests are not normal for those with GBS.  So my clear tests would indicate no GBS? At least not yet.   Each week something new develops.  I can definitely sit here another 6 months and ignore the various symptoms, as my nerves continue to be affected by an unknown entity … or I can stay on top of this and annoy the heck out of doctors, and feel stupid when they tell me Im fine.  I don’t like either alternative.

      Another problem is that I present very healthy.   I am 38 but am routinely accused of being 24.  I am tan (from being in Florida) and have taken really good care of myself including fitness, so my body looks healthy and strong.  My face looks young.  Despite their training and intelligence I cannot count the number of times doctors have made assumptions purely based on my countenance and youth.  Its frustrating.

      I found the Cleveland Clinic here in south florida which is apparently a research hospital.  I have requested an appointment.  I may call Dr. Dyck and get that ball rolling too.  My biggest thing is that this is so mild.  Maybe if its medication-induced, it can occur at a severity much slower and more mild than other types.

      One doctor told me Lumbar Puncture is risky and you run the risk of introducing bacteria to your Cerebral Spinal Fluid which could cause a lifetime of pain and illness.  Do you all agree?

    • GH
      October 27, 2012 at 8:12 pm

      It doesn’t read anything like what I have (CIDP). It is not a good idea for you to “settle in” on a diagnosis. Better just to keep track of your symptoms until you find a doctor who understands them.

    • GH
      October 27, 2012 at 8:20 pm

      As for spinal fluid tests and such, doctors do not (and should not) order tests merely because a patient suggests it. There are risks associated with many medical procedures, and a physician must weigh the value of a procedure against the risk. Physicians are trained to do this — you are not. I had a lumbar puncture for a spinal fluid test because my neurologist wanted it to support his diagnosis. It is not something one should do merely speculatively because you don’t know what else to do.

    • Anonymous
      November 5, 2012 at 6:17 pm

      I got my ACE test back today and with a range of 16-68, mine came in at 80 …

      2-3 weeks ago it was at 68.

      There is a condition known as Neurosarcoidosis that has the symptoms I am experiencing.  Im not sure if there is a Neuro CIDP.  And for the record, I’m not taking a huge leap here with the whole Sarc/CIDP thing.  Several folks who took the toxic meds I was given developed Sarc and CIDP.  So its anyone’s guess.

      Any suggestions?

    • GH
      November 5, 2012 at 8:30 pm

      Here’s some information on ACE levels:

      What do your doctors say about it?