27 months now still have tingling in all limbs none stop

no my neuro refuses as he said it can be negative and i still have it ,also as no cause found its pain relief only so he said no point

thankyou for your reply elizabeth ,it is really sad that in this day and age there is no cure for such a horrendous condition ppl are just left ,im the same i cannot stand to wear trousers but have to wear something to go out ,i live in my underwear at home ,as soon as i get bk from shopping im taking my trousers off for relief my legs feel there being strangled in trousers ,its an awful disease changed my life overnight ,i actually feel more sorry for you than myself reading your post as im still very good with walking and haven't had to suffer with surgeries ,i hope we all get some relief sum time soon

HI Dawn,

I have had tingling for about twelve months and also twitching. The tingling started at the front of my head then spread to my entire scalp region, sometimes going down to my ears.

The twitching started after I had a emotional meltdown about the tingling because it dawned on me it could be a horrible neurological disease . Im also in the throes of full blown menopause so I can only assume that is contributing a lot as well, many women have complained of tingling, twitching, burning pain etc. in menopause it seems.

The tingling started after two things occurred. I had what felt like bad sinus pain and also pain at the back of my head/neck and throbbing headaches started. I treated with nasal sprays, sinus tablets eventually giving up and going to the Doctor who prescribed antibiotics. First lot did nothing, I went on heavy duty antibiotics which improved things slightly, but about the same time as all of this, I was painting and held my head in twisted positions for extended periods, that is when the tingling really ramped up and spread.

As I have large bone spurs (osteophytes) on my cervical spine, as well as degeneration of disc space, I assumed it I had irritated nerves with the bone spur pressing on the spinal cord etc.

I went for an MRI of the brain and cervical spine. The MRI showed several non specific spots in the white matter of my brain, which is according to the radiologist and the number of Doctors I have seen is nothing to worry about and can occur due to headaches as well.

My cervical spine MRI showed that the bone spur is almost touching the spinal cord whilst I'm lying flat and straight, so it's presumed that when I move etc, the bone spur will intermittently impinge upon the spinal cord at times BUT...I have been told by my main Doctor this would NOT cause tingling that I am experiencing.

I keep getting told my anxiety is causing this, but the thing is I had the tingling BEFORE I became anxious about the cause of it all.

I have had every test known except nerve conduction and muscle because I've been too chicken to see a neurologist., which I have a referral for . I suppose it will be a matter of time before I do see a neuro, because I can't live life like this.

The tingling waxes and wanes. Some days very intense , other days mild and irritating, occassionally not present at all. The scalp tingling bothers me the most tbh.

I am now on cymbalta, which helps a little.

When I go to the neuro, I will post an update. I'm terrified it will be parkingsons or MS, or god forbid MND. although I'm not experiencing muscle weakness.

Best of luck Dawn, you have my sympathy, because it feels to me I can't be really "present" in a conversation when in the background I have this tingling bubbling away.

Which antibiotics were you prescribed ?

If something is pressing on the nerves of the spinal cord, irritation such as numbness and tingling or pain could occur. Anxiety alone does not cause neuropathic symptoms. I have constant tingling, pain and numbness in my arms, hands, and recently my feet and leg irrespective of whether I am anxious or not. I have a lower spine injury and when I feel it acting up, I get neuropathy in my leg and feet.

hiya thankyou for your wishes ,it has driven me insane if i cud just get an hour without it sometimes id be happy but not 1 second in all limbs for 28 months now its ridiculous to be left like it ,when a neuro says they havent seen anyone in there 30 year career like me i know its not anxiety as hed of seen thousands with that in 30 years ,i just dont know why they wont contact other neuros for advice and just leave me to suffer with no treatment ,i dont think they understand how bad this is to feel pins and needles permanent in all limbs its so hard to cope with ,i worry what will happen in the future i have young children i conceived my youngest whos now 17 months 3 months into this illness so its definitely not menopause related

Hi Derek,

Amoxicillin and then amoxicillin and clavulanic acid. So not the usual nasties that cause nerve damage.

Hi Pippa,

Thanks for your reply.

It's terrible, isn't it?. I think for me, not knowing is the other main issue.

I also had two lumbar discs in my back go, but due to a locum Doctor filling in who refused to send me for an xray or ct scan, I didn't get a diagnostic work up until about six months after when I was much better, which showed two mild disc bulges

I mean I walked in to the locum Doctor's office with my hips going one direction and my upper body going another.

I'm honestly scared it is a neuro disease and I've never put off an appointment in my life, but I have with seeing a neurologist, I know it is a matter of time before I have to go.

At least something to be thankful for.

Bulging discs could well be the cause of your symptoms; sounds like you already have a diagnosis since the scans showed up the damage.Back injuries tend to leave nerve problems behind such as tingling, pain, numbness and burning. I find over exertion or wet weather sets mine off. To be honest, I wouldn't worry too much about it. Bulging and slipped discs are very common. My aunt slipped a disc and she finds mild back exercises help. For me, painkillers, heat treatment and not exerting myself too much, improve symptoms. The injury took place in 2001/2002 and apart from a few very painful flare ups and leg and foot numbness of late, nothing worse has happened and life goes on.

I stay clear of doctors and specialists unless absolutely necessary because I got a nerve injury from a simple blood test because the health care assistant didn't know what she was doing. I now have a fear of getting these injuries treated on case they get made worse.

Do doctors agree that is the cause ? I had a standing X-ray of my spine hoping that it would show more with pressure on it. The facilities in London who have open MRI scanners will not take patients with MRI compatible pacemakers although a company rep will come to reset it for me.

I damaged the bone at the base of my spine after a fall and sometimes the area swells up before I get the pain. I never had it checked mainly because I often find I come out of the doctors with worse trouble than I went in with. I wonder if the on off swelling is actually a bulging disc rather than the bone itself because I imagine bones don't swell. I have told myself for years that it is the bone but I could very well be wrong.