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  • November 10, 2017 at 12:42 pm

    Thanks so much for everyone’s input and reply’s.

    I guess it only makes sense, when dealing with GBS or CIDP, that weakness will persist until the nerves are healed, if and when they do (hopefully).

    Another EMG this coming Monday – still looking for answers and a diagnosis. But it’s hard to get any kind of treatment when they still can’t figure out what’s wrong with me. At this point, I feel like I’d be willing to try anything to just get my strength back.

    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!

    November 10, 2017 at 12:10 pm

    @aamcw We must have the same thing, so if they ever figure out what it is, please let us know, and vice versa.

    My symptoms started out exactly like GBS; lower leg weakness, bilateral, which then slowly progressed into my upper body, arms and then spine. This began for me back on June 24th and I am still undiagnosed and have been through a plethora of Doctors with negative test after negative test. Same thing happened to me back in 2009, crippled me for 4 months and no one could diagnose me then either, but thankfully at that time it just eventually resolved/remitted and my strength came back.

    This time however has been much worse, and has also affected my spine (don’t ask me how, except maybe all the muscle weakness caused so much instability, my muscles could no longer support the skeletal structure, idn), but two months in, I then ended up with an annular tear of my L5 S1 disc as well as multiple bulging discs. Frustrating to say the least, because I sometimes wonder if I had been treated at onset if I might have avoided what this has done to my spine. 🙁

    Anywway, I have another EMG scheduled this coming Monday so we shall see if it provides any answers. They will also be looking/testing for Mysasthenia Gravis this time around, which it sometimes seems like it could also be that.

    I feel your frustration and hope you find some answers as well.

    October 1, 2017 at 5:39 pm

    Your symptoms sound so similar to what I’ve currently been going through; how my ankles give out, want to turn in and kill me if I have to walk too much. How my knees feel like they will buckle due to the leg weakness, so I have to keep leg braces on them.

    Seeing a second neurologist in a ouple weeks and hope eventually I will get a diagnosis and hopefully the proper treatment.

    August 21, 2017 at 7:41 pm

    Hi B… I think that’s a good idea; to look for a Neurologist that is recognized by the Foundation as a ‘Center of Excellance’. My biggest concern now is that I was not diagnosed accurately at onset, and now two months later, am still having extreme difficulty walking, am in braces and can only walk very little.

    Last time this happened to me I couldn’t walk without braces until 4 months out from onset.

    I am seeing an orthopedic doctor on Wednesday because my legs are so messed up from the muscle wasting, tendonitis, and joint laxity. I feel like PT isn’t making much of a dent yet. Muscles are still all mush.

    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.

    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 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.