GBS to CIDP

[ecarol]

Help! Seems to me everything started with the feeling of a stone under my toes on one foot then started feeling tingling-pins& needles like someone had put a rubberband around my second toe and from there it spread to my other toes and then up my foot causing it to feel painful with the tingling-pins and needles and numbness (sensory?) to heat or cold (such a contradiction!) in the meantime my other foot started acting the same way w/same progression.  Started numbness, tingling-pins& needles in my fingers (rubberband feeling again worked through all fingers both hands)  Went to  a neuro who did an EMG and was sent to get carpal tunnel surgeries on both wrists,...that didn't help much this went on for over 8 years diagnosed as idiopathic ..in the ninth year I had a wierd floaty, running-into-corners-tripping-over-nothing balance problem with increasing weakness and was strongly encouraged to see a chiropractor which I did and went through a month or two of adjustments to no avail ..I was progressively gettig worse and was finally sent to a neurologist who knew about GBS/CIDB.   Went through IgG which didn't help then on to the hospitalization for 11 to do the plasmapheresis exchange (on everyother day) which finally did help. My final diagnosis was CIDP.  But I still have the numb-tingling-pins and needles in feet up to mid-calf and in hands as well as balance problems.  Is anyone else dealing with this ...it has been year this month since my diagnosis.   will this ever go away?


This discussion is related to Arm tingling, tremors and 4 x elevated GM1 antibody?  Should I get a second opinion or do nothing?.

[ecarol]

Please notify your doctor and let him know that your face is getting worse ...that I would think is a "red flag" that things aren't quite right!  Also sign up for the GBS/CIDP International online and start getting their newsletters ...great source for information and their welcome package is full of pertinent info.

I went through a full round of the IVIG and didn't get much better then went through an abreviated round as an outpatient at my local hospital and still wasn't progressing so my neurologist finally put me into a hospital that could do the Plasma Exchange which really helped me then on some steroids for a few weeks.

I really hope that the neurologist will look into the Plasma Exchange for you if you are not progressing.  The problem with this CIDP is that it is sooooooooo individualized!  But it sounds like you and I have very similar reactions to the IVIG so I thought I would tell you about the PE.  You might ask him about it.

I got hit with CIDP in August of 2008.  Untill that time I had never heard of it before!  I am getting better as time goes by but it is so slow.  Some say GBS would have been easier to get over...quick onset and quick recovery...but with CIDP it progresses over time and (often get misdiagnosed as idiopathic neuropathy) a much slower recovery... sometimes in increments... but at least we will get better this much we are told!

Keep in touch!

[LaurenKT]

I have CIDP...and have EXACTLY the same symptoms.  Numbness...tingling...lower legs.  I did the EMG...Basically showed that the nerves from my knees down didn't work at all... I did one round of IVIG 2 weeks ago and am slightly better.  However, I'm still numb and still don't have an ankle jerk reflex.  I have orthostatic hypotension and problems with balance.  Sometimes really severe vertigo as well.  I see my Neurologist in 2 weeks.  I'll more than likely be scheduled for more IVIG and some sort of steroid.  It also seems that the numbess and tingling in my face has gotten a lot worse since IVIG.  I wish someone knew more about this terrible disease.  

[ecarol]

Thanks for posting!  I am so sorry you are dealing with such a load....I hear Fibromyalgia is really painful.  I have seen Lyrica, which is what I take for my painful/numb/tingling/pins
and needles feeling in my legs, advertised on tv for Firbromyalgia.  You might try that.  Also the only two tests that actually diagnosed what I had was the EEG (tiny needle probes that measure how fast an impulse travels from one point to another) and a Lumbar Puncture (spinal tap) all my other tests turned out negative.  Your neurologist may not be familiar with GBS (Guillian Barre' Syndrome) or CIDB (Chronic Inflamitory Demyelizating Polyneuropathy).  You might ask him to look into it...if he doesn't act on your suggestion ...second opinions are always an option.  Good luck, let me know how things go.

[ecarol]

Thanks for your post...how long do people take the immunosuppresive therapy?  I had one session of IVIG (5 days) got some better then did out patient IVIG and when that didn't seem to help much either ZI went back into hospital for 11 days to do alternate days of Plasma Exchange which finally turned around my decline.  Afterwards I had a few weeks of steroids?.  I have been on Lyrica3x daily since.  My concern is that I wondered if this is the usual treatment or would another round of Plasma Exchange help even more?  Or is this what I have to live with from now on?  Will there be relapses?  I still am unable to Drive/Work due to imbalance and walking problems and numb fingers...guess I am a risk for the job market right now.

[DrNoopurMD]

Hi,

On an average about 70-90% patients with CIDP make a relatively good recovery. Only a small number of patients do not respond to the usual treatment and accumulate significant disability.
Are you taking immunosuppressive therapy?
It is very difficult to tell as to when exactly your symptoms will go. Please continue the treatment and hopefully these symptoms will also go.
Take care!

[katika29]

I have exactly the same tingling, pins & needles on toes, foot going up ankle and legs. Also have the same feeling in my forearm, wrist and fingers. It started with my left arm, then went to my left toes, feet and leg, sometines also have tingling on left side of my face as well, as well as balance problems.The tingling is now also starting to occur in my right arm and right foot - toes,ankles and leg. Went to a neurologist, had MRI and many blood tests, he said brain scan doesn't show MS, which I was worried I had because all of my symptoms matched. Blood test showed low - moderate rheumatoid arthitis, but Dr. didn't seem to think this was source of my symptoms, he said I have fibromyalgia.  I have had fibromyalgia for over ten years, and this is different, it is not only painful, it is also tingling, and numbness which I don't have w fibromyalgia.  What is GBS/CIDB? Dr. gave me Neurontin for pain, but kind of dismissed my claims and said it is severe case of fibromyalgia.  I am also taking Xanax to give me a good night's sleep. Have you had any further relief. I am taking Aleve or Motrin every day to help me w pain but I heard its not good for stomach on a continuous basis.  I don't know what other kind of Dr. to go to, they all seem to dismiss claims, and say it is probably stress, or anxiety.
Yeah I'm stressed and anxious because I'm in pain and no one takes it seriously.  I seem to have exactly same problems as you, thanks for writing in so I don't feel I'm only one with these symptoms.  Please answer and let me know what medicines your taking and if they are helping.