Joint Laxity and GBS

    • August 13, 2017 at 10:37 pm

      Has anyone else experienced joint laxity with GBS and/or CIDP? I am currently waiting an official dx, but am quite certain that what I’m experiencing is GBS or CIDP. Intial bout was in 2009 (though at that time too, Dr’s couldn’t figure out what was wrong with me, even though I was basically crippled for 4 months) and now I am in a relapse with symptoms identical to my first bout, though, a bit worse this time around, maybe because I’m older. I also happen to experience A LOT of joint laxity which my PT has confirmed. Especially in hips and knees which makes exercising even more difficult and painful. I can only do tiny movements and last time I went, the PT put me on the recumbant bike and I could barely do 2 minutes before it felt like my leg was gonna give out. Since my last session, leg weakness has increased with accompaning pins and needles. I’m 7 weeks in since onset and can barely walk any longer, with Dr’s giving me the run around. It’s been awful, to say the least, and am finally going in for an EMG tomorrow, after finding information about GBS and telling my Neurologist that sounds like what I might have. Ugh…

    • August 13, 2017 at 11:45 pm

      CIDP DX for me. My legs (hips, knees,thighs, calves) are worst and where it started with extreme weakness and progressed with neuropathy. Before it went full blown I had noticed time on exercise bike was shorter and difficult but did not know why.

      Not hypermobile though at joints (at least as much as I understand the term joint laxity), if anything the opposite, but a similar issue of smaller movements needed much of the time. When things are really bad I get what I term “floppy foot”…not quit sure if its “drop foot” Ive read about.

      In 4 weeks my walking ability deteriorated immensely and by 7-8 I went to bed each night unsure if I would be paralyzed in the morning. Got put on steroids while still doing testing which seemed to slow things down, but saw no real improvement until put on IVIG.

      They first thought I had GBS, but after crossing the 8 week mark and getting multiple EMGs, MRIs of brain and spine, and an LP, they changed their minds to CIDP.

    • August 14, 2017 at 9:48 am

      Hi Cer100,

      Thank you for your reply. Curious, how are you doing now? Are you still in the recovery phase and how long has it been since onset for you? I know how horrible this is, and wish you the best, and for a full and complete recovery.

      My first bout with this (2009), it took awhile, but after 3-4 months, I finally, gradually started regaining my strength back, was able to ditch all the braces at 4 months, and was able to walk again on my own. I’d say it took a total of maybe, 8-9 months until I felt like my former self again. I can’t even begin to describe how grateful I was and said I would never take walking for granted again.

      Now, here I am again (2017) and it’s 2009 all over again, where I’m faced with trying to just get myself through a day with severe mobility issues, and hoping to god, like last time, I will eventually recover.

      I think for me, the joint laxity makes recovery even that much more difficult, because if I do too much of anything (which is hardly anything), I feel like my joints are gonna pop out of place. This in turn puts a great deal of stress on ligaments and tendons and feels like constant injury (trauma), which then later translates to burning nerve pain.

      I kept trying to tell the Dr’s (family Dr. and Rheumy I’ve been seeing, who keep wanting to say I have Fibro, when I haven’t even had the EMG yet), that this is also one of the symptoms I’ve been experiencing, like EDS symptoms, but they’d just tell me that was impossible, you don’t have EDS (and of course would never really even examine me for the issue).

      When I finally heard of GBS (literally just a week ago), after my Mother ran all of my symptoms by a Nurse/Friend of hers, her friend immediately said Guillain-Barre, which I had never heard of up until that point.

      I googled it, and after reading everything I could get my hands on about it, literally went “this is it!” Nothing I had read up until that point described me symptoms to a T as GBS has, and the fact that it can relapse, which is what I am currently in now.

      How the Neurologist I saw at 2 1/2 weeks from onset missed this, I have no idea. Except sitting on his table, apparently I didn’t look sick enough, and when he examined me he didn’t have me take the braces off or watch me try and walk without them, and so instead, steered me down the Rheumy path and scheduled my EMG five weeks out.

      I have only weakened/deteriorated even more since then, but since he made it sound like it more than likely wasn’t neurological, I’ve only been going round and round with my family Dr. and the Rhuemy, who have done much of nothing to help me.

      Once I heard of GBS I called the Neurology Clinic and spoke to a nurse there and told her what’s been going on since I saw the Neurologist and I think what I have is GBS, which my PT also believes I have (who I just saw for the first time this week also).

      All this said, it has been a nightmare, to say the least (which I’m sure just about everyone who’s gone through this will attest to), trying to work, not lose my job, and being forced to walk on my legs all this time (seven weeks now), increasing my pain ten fold at night.

      Come to find out, after reading up on GBS, joint laxity is and can be a symptom. I came across this information in an online article:

      “The most common symptoms of hypotonia in GBS involve problems with mobility and posture, breathing and speech difficulties, lethargy, ligament and joint laxity, and poor reflexes. Some hypotonics may experience constipation, while others have no bowel problems.”

      I’ve just been wondering if any others dx with GBS/CIDP have also experienced this as one of their symptoms.

      At this point, I think I am so frustrated beyond words. Today I finally go in for the EMG (which was originally scheduled for the 17th but the clinic bumped me up to first available, since I called them), but at seven weeks since onset, I don’t know what it will show.

      Hoping for a full recovery eventually, but it is a long process. And hoping I can finally get some Dr’s who will actually help me.

    • August 14, 2017 at 5:17 pm

      Full blown symptoms out of nowhere late in 2015 although looking back there were indications like changes when riding exercise bike, small balance things, crawly skin sensations, some mild tingly in fingers etc. which Drs dismissed as those weird things that bodies do.

      DXed in early 2016. Not doing as good as I was the first 6 months after IG TX started, better than I was 6 months ago with significant relapse over 4 days, stable the last couple of months. Im not going to be running any races or playing a round of golf anytime soon.

      Im a tad over 18 months in and it took multiple neurologists to get a DX. Id suggest finding one with some background/experience in neuromuscular disorders.

      So I hope this is still a recovery phase because if its my new normal, its going to stink. Legs are weak and unable to generate power like used to, arms too. Some gross and fine motor skills are back, but others are still not completely right.

      Each 6 months or so IG seems to lose effectiveness and we shorten time frames between or bump up the dose. Can only do so much of that though.

    • August 14, 2017 at 5:51 pm

      Hi Cer100,

      Sorry to hear you’re not fully recovered yet and I hope you will eventually get better – 18 months is a long time. Have you tried any natural alternatives at all? Just curious.

      I’ve been taking alot of vitamins these past two months, since this all started, hoping they might eventually help, but really haven’t noticed much of anything yet. Well, except my muscle weakness seems to have improved somewhat over the last two weeks, or at least stabilized, but the joint laxity is awful and really seems to be causing me alot of pain while walking.

      Just had the EMG done this afternoon and the Dr. said all my nerves and muscles were working great! They all seem to forget how much difficulty and pain I’m experiencing while walking and only seem to see test results – it’s insulting. I’m in knee braces and am having to wrap my ankles but this doesn’t seem to make a difference to them at all.

      I don’t know if an EMG would even show anything at this point when I’m over seven weeks since onset and I wish there were a GBS Dr. I could run this by and ask.

      Like you said, I think I need a Dr./Specialist who is very knowelgeable in GBS to be able to identify all the symptoms I’ve had and am having.

      My Rheumy wants to label it Fibro, but I can’t find any evidence that supports Fibro disabling people’s legs to this extent, or that flared up in 2009 and the cleared on it’s own after 4 months – it doesn’t make any sense.

      Seriously discouraged. 🙁

    • August 14, 2017 at 10:16 pm

      I take vitamins, but did so “before”.

      Havent really tried any natural alternatives but am looking at anti inflammatory diets.

      Of the few others Ive met with this most had EMGs reflecting abnormal results, but there doesnt seem to be a definitive way to determine…a lot of what it isnt instead of what it is.

    • August 15, 2017 at 9:36 am

      Schwann cells make myelin. They need VB12. I am jamming B12. I noticed my neurologist just ordered a B12 test for me. Since GBS partial recovery (I was attacked March 13, 2017), my knees are a wreck. Both knees feel like bone on bone. I had ragged menisci in both before, but nothing like the current pain. Feels like arthritic symptoms. Once I am up and moving they are better. I am really compensating on my right leg and hyper extending my right knee because my right quad muscle is so weak. Not good…..I plan to get knees MRIed soon. My insurance company is getting pissed… wishes for you….

    • August 19, 2017 at 5:06 pm

      Hi Vrobters129,

      Thanks for the well wishes. I too am scheduled for an MRI of my knee next week, though, not sure if it will show anything in regards to the joint laxity – we’ll see.

      I’m starting to think much of the laxity I’m dealing with is due to the massive muscle weakening and atrophy. Having serious problems with my right ankle now because my calf muscles are pretty much mush at the moment. It’s so difficult to exerise when the ligments are lax – ugh.

      Trying to get an appointment with a Physiatrist and continuing Physical Therapy, but I feel progress is going to be slow going.

    • November 5, 2017 at 10:48 am

      I have ehlers danlos in addition to CDIP. This causes joint laxity among other things

    • November 10, 2017 at 12:34 pm

      @eft27 thanks for the reply. I have also considered it might be EDS, or a combination of EDS and something else. Whatever it is, it starts out as muscle weakness which then definitely caused (at least in my case) joint laxity. I sometimes think when the muscles go flacid, a whole lot of other structures do too (such as tendons and ligaments) and then everything gets loose. For me this caused instability in my ankles, knees, pelvis, and spine. As the muscles start to regain some of their strength (which some of mine have, but not all of them yet) these joints start to stabilize, so for me so far, my ankles and pelvis are much better, but still weakness in knees and spinal instablity. Awful stuff, as you know.

      Curious for you, did you first get CIDP and then EDS, or vice versa? Just wondering how your symptoms began? Thanks again!