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Living with Polyneuropathy CIDP, GBS, & CMT

Reflexes and GBS


#1

I got tested for leg reflexes today …I’m a year in…nothing. Hmmmmm


#2

Nothing as in no reflexes or no improvement? That has got to be frustrating either way. What are they doing for you? Have they referred you to a Physiatrist? He may be able to better direct your PT.


#3

I had no lower reflexes the first year into the second year. Am now into my 4th now and I have almost all returned.


#4

I meant no reflexes. I can feel improvement almost every day. A year ago I was in hospital and had no use of my spaghetti legs and little use of my arms. Today I’m about 90% recovered and the bits that are left are small things like feet feeling rather weird, a bit of strange feelings in places and of course the old he haw the tiredness which I hasten to add also improves from month to month.

I live in Denmark where our health system is really second to none so have been in the hands of wonderful physiotherapists since almost day one. I go to what we call training three times a week. I could go more but feel that is sufficient and my physio agrees.

My improvement has been so good that my physios have all said it is what makes their job worth while which makes me feel good too.

Another physio tried me out for reflexes today with the same result. Your info Meta was very heartening and I’m sure now I’ll get mine back again in time.

Thank you all for your replies.


#5

so did you have an accident to lose the reflexes or is it part of a disease? I have CMT and thought you could never get those reflexes back. that would be great!


#6

Ok I’m caught up now, following the links on this website goes in circles trying to find out what GBS and CIPD are. Thanks to wikipediaI now know what we are talking about.

I’m so glad you have the physio to help you recover somewhat, I’m terrible for keeping up with my exercises. :fearful:


#7

Hi Wulf…another one with a Danish name…I’m glad that you are in the loop. We’re all going to be a lot more knowledgeable with neuro illnesses because of this new website.

As is normal at this time of the day my brain has left my body so I’ll get back here tomorrow morning when I’m bright eyed and bushy tailed.


#8

Meta,
Four years? I am only 9 months in and have a lot of pain and bad reflexes. Do you still have pain?


#9

Hi Dave, believe me it gets better…everything gets better but it takes time. I found that I could often lessen the pain with muscle spray. I still have little dots of quick pain before I fall asleep like a little devil is sticking a hot fork into me. It only lasts seconds and really is nothing.
How are you progressing? Can you walk? Do you need any Handicap aids? Are you getting rehab training?


#10

Hi DaveD, sorry for the late reply… I do still have pain, certainly much less over time but it still exists. My progress seemed profound and rapid in the early stages and then plateaued. The improvement is slow and gradual now but continues.
9 months in for you… If you feel like sharing I’d like to know what level your illness reached and how much paralysis you experienced.


#11

Hi Meta,
I went into the hospital in AUG 2015 with weakness in my legs and tingling in my hands. Within a couple of days i was paralyzed. I slipped into a coma and was intibaited and had a tracheotomy. I spent 8 weeks in the ICU and at one point the doctors talked to my kids about pulling the plug. Fortunately that didn’t happen. I came home after about four months and a lot of PT. I can walk on my own now but still have some balance issues and pain. Im on Gabepentin, Amitriptyline and cymbalta. They deal with most of the pain but still have bad days. I go to the gym almost everyday to get my strength back. Im sorry to hear you still have pain after all that time. Do you still see doctors for the GBS? How bad did you get it? I ask the doctors if i will have to take this medicine for the rest of my life and they all say they don’t know.


#12

Hi Dave,
Another late response from me and again I apologize.
Yes I still see a neurologist and a rehab physician for GBS related issues.
You had asked how bad things got… I as you required a tracheostomy. I was totally paralyzed in ICU for 3.5 months, sight/vision effected for 3 weeks. Then was transferred to a rehab facility for 2 months. I have had in home physio and in hospital physio ever since and it continues still.
I still have residual issues and pain.


#13

I have CMT and only take 2 medicines but I can tell that my legs and hands are getting weaker. What medicines do you take and what is a physiatyist?


#14

I have cisp, a form of cidp, cleveland clinic diagnosed it for me. I was fine until I was digging and lifting and laying big patio stones for a walkway. That night I had severe pain in my back and all around my middle and if felt like it was swollen. I had a lump on my back that hurt so much. I had sit down mri in Pittsburgh, and xrays and some scans with die in Meadville. Doctor there couldn’t find anything wrong, the doctor sent me to cleveland clinic. Before that I had spinal tap, and nerve bioptsies, nerve tests. Said it was cisp. Sensory and nerve disease. I could hardly walk and no balance. It took over a year and a half to find out what it is. I still think its something to do with the back. Found a broken vertebrae, but couldn’t tell when it happened. No reflexes. Finally, after 2 yrs or more got ivig, 4 days. Didn’t seem to do too much. I got worse, legs felt like I was going to collapse. Now getting 4 bottles once a month for 3 months. I get the muscle spasms so bad its like an heat attack. I did get flexiral when that happens seems to help. I doubt if I will be normal again. I am 74 now, I have always been active with gardening, cutting grass, walking dogs, now I can hardly walk and use a cane, lose my balance if I turn too fast.