Neuropathy ? Or something else.. help!

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Been going through the worst 4 months ever trying to figure out what is going on. All started with pins and needles kind of feeling, numbness in feet and hands mostly and crawling insects sensations inside of me ( literally everywhere ) had my mri done which did not show anything. Did a bunch of blood tests which came back ALL normal. Currently I am feeling like twitching ( insect like crawling ) kind of sensations inside of my body. And I noticed visible twitching aswell. Mostly randomly.. can be my leg on and off and then my arm and then again back to my leg. My fingers and toes feel very stiff in the morning and feel a bit better through out the day. My muscle feel tight, stiff and I am experiencing this heat pain when I move my arms especially typing I feel this heat sensations like my muscles are getting torn apart... when I move my muscles they seem very unrelaxed. My neurologist said possibly peripheral neuropathy but he isn’t unsure.. waiting for my EMG and NCT in 2 weeks. Anyone experiencing similar symptoms

? Any advice on what can this be ? 

I am very frustrated !! Been always active and healthy and now i’m getting super stressed that it might be ALS or something not good. 

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  • Posted

    Were you on any medications before it first started?
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    • Posted

      Same here, I was completely healthy before all these weird symptoms started summer 2016. Now I'm a million times worse, no diagnosis or treatment still, and my life is ruined LOL 

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    • Posted

      But yeah I have literally all the same symptoms you're describing, plus a lot of other stuff, it's the worst....makes no sense how you can be completely healthy ur whole life and out of nowhere have all this stuff happening with no answer 

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    • Posted

      I recently been feeling a lot of joint stiffness and muscles twitching or jerking but it feels inside I can’t really notice it .. only noticible in my left Leg.. twitching on and off.. and sometimes weird vibrations feelings.. I am kinda worried about ALS been readin too much.. mind going crazy 
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    • Posted

      Same here with the muscle twitching and jerking, but for me it's everywhere. I feel the vibrations inside my body too. I had difficulty walking for a while last year, not sure if I got used to it or if it went away...I was thinking MS but none of the testing comes back positive. 

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    • Posted

      Is your muscle twitching visible ? Or it seems like it’s an inside sensation ? 

      My mri of my brain and spine came back normal - no indication of MS 

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    • Posted

      Hi Yashie765,

      Not sure if you still check this, but have you gotten closer to figuring out what is going on with you? Your symptoms are much like mine, and I'm also relatively young. Did you explore csf leak or chiari? Thank you for any feedback...

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    • Posted

      Hi Mackenzie! How are you doing? I'm experiencing a lot of similar symptoms and it's been getting worse. It feels like fluid all over my body. Burning sensations and now my skin feels stretchy and unattached to my fat and muscle. Could you email me at so we can compare and talk about our symptoms? And share any medical help if you have any advice?

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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  • Posted

    I take it that there no family history of similar symptoms as many 'neuropathy' problems can be hereditary. I had blood tests for possible genetic conditions that also did not spot anything. CMT was ruled out but the last neurologist said it was probably a form of that despite the tests.

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    • Posted

      What kind of symptoms are you

      Experiencing ? 

      Should I be worried about ALS knowing it’s a rare disease .. and mostly genetic.

      No genetic neuropathy in my family at all...

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    • Posted

      In some ways not as much as you but more restrictive. I started off with an occasional numbness in my left foot for several years. I could live with that and had been told it had no sinister cause. However over a ten day period in June 2015 it worsened to the extent that I could not cope with walking on changing surfaces as it unbalanced me and I needed to hold my wife's hand to balance myself. I could no longer go out on my own as the numbness worsened with shoes on and after walking or standing for a while. I was OK walking barefoot at home.  At the time I was taking the beta blocker Bisoprolol for atrial fibrillation. I stopped it and to a degree the numbness improved but my walking didn't. I had previously taken Amiodarone for my atrial fibrillation  and a fluoroquinolone antibiotic both of which can cause long term problems even well after stopping them. 

      After the initial tests by the neurologist I had nerve conduction tests. The doctor doing them thought that the problem was caused by my lower back as much as anything. I had put the lower back pain down to my change of gait due to the numbness. 

      I had a CT scan of my lower back and was told that I should see a neurosurgeon about. He then wanted me to have an MRI scan. It did not as he said show anything for his knife and suggested that I needed to see a specialist neurologist (most are general ones).It took a long time to find the specialist and was a waste of time as he was in a hurry and I was in and out in no time and he had a one track mind about CMT. I said that the earlier tests had not suggested that but he said they may have done the wrong blood tests and nerve conduction tests ! 

      I’m convinced it is drug induced or from my back. I then had a standing X-Ray hoping that it would show something with weight on my spine but it didn’t. I’ve since had another two consultations with back specialists who do not see a cause for my problems. In April I bought an electric wheelchair so that I can get out on my own. The suspension on it is not very good nor are our local pavements and it does not support my back enough so my back is worse when getting out of it. Recently my hips and knees are also feeling the strain.

       

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    • Posted

      How different would that be from a  complete spine and pelvic one? Previously had a head MRI scan. No one has suggested MS and the symptoms do not seem like it.

      The CMT diagnosis to a degree stems from my having narrow high arched feet and in recent time hammer/claw toes that have been ignored whenever I have mentioned them to podiatrists and doctor over the past twenty years. My mother also developed late in life but that was after a lifetime in high heels

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    • Posted

      Yeah does not sound like MS. I really hope you will get better and find your diagnosis. There are so many disorder and diseases out there with no explanation which really sucks I hope you get ur explantion!! I feel your pain even tho we are experiment different symptoms ! 
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    • Posted

      I've been trying for two and a half years. Much of it self funded as NHS waiting lists usually come up at around 40 weeks. I want a standing/siting MRI scan in an open scanner with pressure on my spine but there are only a few in the country and my MRI compatible pacemaker presents a problem. The makers rep will come to Medserena and reset it for me but she needs a physiologist or a doctor in attendance and they cannot arrange that.  My cardiologist is trying to set something up at the moment.

      One person on here had six MRI scans before going to the open scanner and finding problems that had not shown up on the standard scanner.  

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