Neuropathy ? Or something else.. help!

No meds. No drugs. Came out of no where ... never had any serious disease or condition. Healthy girl ...

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 

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 

You have not said if it has affected your walking ability so presumably it has not.

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 

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. 

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 

It's an inside sensation. Which is why doctors don't care enough I guess. 

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...

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Moderator comment: I have removed the email address as we do not publish these in the forums.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.

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...

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.

 

Did you have an mri done to check for MS ? 

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

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 ! 

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.