Twitching, Weakness, Atrophy

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I am at a crossroads and need some advice. I have been to a neurogolist for the past year. I started out seeing my PCP for numbness and tingling in my feet. My PCP sent me to Neurologist who perfromed a EMG/NCS which showed moderate peripheral polyneuropathy.  I went to a larger Neurology group in my area. The Neurologist performed anothe EMG/NCS. The latest showed that the only mild peripheral neuropathy. All of my blood worked has come back normal.  I recently had a spinal tap performed which the glucose was normal but the protein was mildly elevated at 54.6 mg/dl. I still have numbeness and tingling but the main symptoms are now fasciculations(twitching) in the calves, feet, right knee, left eyelid and somtimes hand and muscle cramps. I have noticed that my grip is weaker and I get tired of holding items especially in a pinch grip. I have notcied some slight atrophy in my legs and I get tired from walking my dog a mile or two.  My neurologists wants me to go to major research facility like Duke, Johns Hopkins for testing. I am hestitant because right now all of my symptoms are annoying but not debilitating. I don't know if this will get worse and this is something I need to take care of. Or something I just suck up. Looking for advice and help.

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  • Posted

    Please go to Johns Hopkins. You sound like a possibility of several things. I hope that you have either GBS CIDP or some kind of myopathy. Then last possibility is ALS but I would think they may have known that with the emg. You can have fasciculations weakness and atrophy in CIDP. Which is the chronic form of Guillan Barre Syndrome. If You were ill when this all started acutely then it was probably GBS since your protein is a little high but going back toward normal. You are probably gettimg better. If your protein stays up and your weakness gets worse with atrophy it may be CIDP. Which you will need IVIG therapy for consistantly. Since you say you are improving that should rule out ALS because once it starts it gets progressively worse. If you want to try some natural stuff bring your immune system up by taking antioxidants like alpha lipoic acid in 300mg or more a day eat fruits and dark leafy greens and light exercise. Protein and vitamin d3. Did they say if your vitamin d was low? I still encourage you to go to Johns Hopkins. Habe a betyer study emg done so they know exactly what is happening. Write down the symptoms from beginning to present. If you were ill before or had a vaccination. Etc. Best wishes. Let us know what happens.

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  • Posted

    Have you ever been prescribed Cipro or fluoroquinolones ? They can cause forms of neuropathy and other problems even long after you have taken them.
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  • Posted

    I can't say for sure but sounds like you may have had a mild case of Guillan Barre Syndrome or you may have Chronic Inflammatory demeylinating polyneuropathy. Look them up and see if it sounds familiar.

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    • Posted

      Symptoms have been going over a year so that rules out GBS. The spinal tap I had done was for CIDP.  Neurologist feels that the mild elevation in protein is not definitive for CIDP.  The past few days the twitching has been worse.
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    • Posted

      I had Gillian Barrie 2/12 year still suffering every time I get sick 7 times this winter just started this week more sand paper feeling in my legs again having hard time walking . I’m scared to go go fall back don’t think I can take another episode . Did you have this to ?
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    • Posted

      Caroline you may need to be checked again with emg and lumbar puncture to see if you are having CIDP. Plus the emg to see how your legs are recovering. Did you have axonal damage? I do still habe some issues with my legs but balance and walking is ok. My achilles tendon and calf muscle on my left leg was affected the most. It shortened so I have to stretch it everyday. It took me over a year to be able to ride mu.bike again. I didnt have a lot of axonal damage just some percent some people have a percentage can be 10 to 90 with GBS or pure axonal where it is only axonal. I wonder what you had. I hope its not CIDP but it could be. You need to be rechecked. You at need therapy again.
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    • Posted

      Hi Hun be leave it or not I was in hospital close to a year 10 before going hospital every day for 10 days I suffered  they kept throwing me out saying all in my head stuff was sad moments crying every day saying I was having anxiety depression depression same emergency doctor sad to say . Tenthth day collapsed ambulances came got there was in and out so hard to talk about cause it took big piece of me specially I was so active with life . So they admitted me my kids family all since I was in and out few days guess stupid them couldn’t figure it out finally 7 days they finally did a spinal tab was positive for gbs they had to give me plasma had trig was on life support few weeks paralyzed except still could move my head eyes talk before the trig . Had to do plasma 2 times due to I felt like I was not well again still one year hospital all the physio so on . I felt better last year then I did this year .Three episodes of diverticlious and 6 times sick with throat nasals having issues with my nasal 4 mounts now . Now my daughter I asked to go back physio cause were spinal tab was get sore back harder to walk .he was suppose to do this I called he didn’t do it few things he has not done going back to him Monday or I’ll sit at emergency cause I no I’m feeling strange lately it’s going on my 3 year June . Just I no every one knows there own body . I even had chief of staff and the dr that kept throwing me out apologizing well that don’t cute it because I was still walking slowly if he would done his job think they don’t want to be sewed another reason
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    • Posted

      Sorry site cute me lol so basically I had tingling all but that not so bad but sandy paper feeling and feel more going up my leg strange wiered when lay on my hand I get more tingling feeling . God felt like this year like I said think cause I’ve been sick more taking lots out me . Don’t no about the clip what is this mean hun? Hope you feel better to I read all this in hear gets me more sad hope you get better what they doing for you ? Now I mean I no get lots of pain my legs knee caps stuff to but can u explain what that means?
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    • Posted

      I got the same treatment at first they thought it was a migraine. Sent me home. I went back 6 times before they checked for anything else. I was lucky that I had it start in my face first then from legs to waist. I received no treatment. They said I was recovering well on my own. Miller fisher variant of GBS can jave spontaneous recovery so I was an exception that I habe breathing difficulty but not to the point I needed trach or vent. I take a lot of vitamins and supplements. One here that is recommended is alpha lipoic acid I take 600mg a day. I also take extra magnesium even though my tests were normal. Water therapy is the best at first but I still get numb tingly legs on and off we just have to deal with that. Exercise helps me but if you can't at least try regular stationary bike riding. It will help your legs. The doctors cant do anything else. If you have nerve pain you can take gabapentin but you will need at least 300mg to 900mg a day for it to really help. I dont use those I take Elavil 25mg for pain and to help me sleep. Sleep is the most important because our body heals during sleep even our brains.

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    • Posted

      Wow that that unbeleable and I do take pregabuline and I take lyerica and I’m gonna do what ur doing magnesium drink more water which I don’t . Good idea because exercising is inportant swimming helps relieve thee situation as well . So I think if the would of got me on time cause every day it was worse for me I find when I’m stress it’s harder I get weaker shake more. I’m on anxiety depression pills cause I got nervous more depressed . I only take lorazepam when needed . So it’s only now and again . But guess it takes one day at a time and very nice talking to every one . Gbs is a night mare I was at the civic 5 Mountbatten transferred to general rehab centre got rehab every day for 6 months went home still paralyzed but I’m proud I worked hard to walk again might not be perfect but got thank god im alive . All of us . Great every one here faces similarities. Hugs thank you .
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    • Posted

      But also not always caused by flue shot many I have talk to had urine track infection or some kind of infection and was not cleared properly and because of it the ended up having gbs . Mine was due to both week after each other had infection and then flue shot .
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  • Posted

    If I'd ever been offered that opportunity - I have very similar symptoms to yours - I'd have grabbed it with both hands!  Fifteen years no wiser than when I started is very frustrating

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