Unexplained nerve type pain

L

Lavern logel

New member
A few months ago I had a sudden onset of ataxia, weakness, vertigo and various MS like symptoms. Most symptoms subsided after 2 weeks but since then I have pain in my hands, feet and ankles and they are still weak and shakey. I also get pain that goes right through my whole body, like a nauseated headache that comes on in a matter of minutes and moving gets really hard. It happens when I get tired, if I'm even a little bit cool or after a hot shower and I have it in the evenings regardless of what I do.

The pain in my legs, feet and hands is like the painful to touch skin when you get pins and needles. I also get tingling/buzzing and twitching. It's getting worse and hasn't responded to anything other than codine, which I'm now taking in increasing doses just to bear it but nothing the dr has given me has worked. I saw a neurologist "not MS, probably a virus, have some Physiotherapy" (I drag my foot and some of my toes on that foot are painful to walk on, I can't make it work right).

I have treated coeliac disease and suspect it is another autoimmune causing the problem, apart for that I've got no idea what it is but I'm still deteriorating. My Dr doesn't know either. Does this sound familiar to anyone, please post anything no matter how bad, far fetched or trivial you might think it sounds, I'm deperate for answers.
 
Well I don't have real answers but I have had lots of nerve pain with sound at night and I also used to take codiene for period pains for 2 days every month for years but I would not do that again if I had to do it all over again. I only wish I had not learned the things I know about health so late in life. I have a movement disorder but I am not dragging my foot. I think the infection I had may have caused my movement disorder. I am sure all the medicines I took did not contribute to my health of my kidneys, liver, or nervous system. My naturopath put me on a gluten free diet to help with the ?celiac disease or ? Chrons or whatever it is. That seemed to have helped I hope it continues that way.
 
I had a head and cervical neck MRI but nothing on the spine. My neck was what bothered me (old injury and ostoperosis degeneration) but my GP didn't think it would have caused that. I'd had chronic lower back and hip stiffness/tenderness with occassional shooting pain I'd put down to wearing high heels and saw a chiro. After I had the attack my back/hip pain disapeared, maybe that wasn't a good sign after all, what kind of a specialist would I see to get it checked?

The neuro was the first place my GP sent me, he did a non contrast MRI, bloods and a nerve conduction study, all clear. No LP but without fever I don't know it's usual to do one. I still suspect my thyroid is a bit off, even though the labs say it's normal. I don't know if we get Lyme disease in this region, I have worked on farms where people have picked up a tick but not for a good 10 years, is there a test for lyme?
 
Hi sjb, thanks for the reply,

I had a chronic UTI infection before all this started, it went on for over a year with multiple courses of antibiotics and I ended up having a cystoscopy, it was a few weeks after the anasthetic all this started so I would not be suprised if the extra strain was what triggered it.

I got diagnosed with coeliac late, I think it's wrecked my system, I have the bones of someone more than twice my age. The gluten free diet completely got rid of my intestinal symptoms, migraines, numbness I had in my extremities and my rashes and joint pain improved a little, this latest thing though is new and came on suddenly.

I'm wary of pain meds too, I saw what they did to my grandmother. Right now though I'm just trying to get through today, I'm in a lot of pain, having trouble thinking straight and no-one can even tell me what's wrong much less treat it. I'm not coping well at all.
 
usually whe you have trouble with your leg and foot it is realated to the discs in your lower back. It is usually an indication that the nerves are firing to the muscles. Have you had an MRI to see if there is anything wrong with your back?
 
Ticks are everywhere and are increasing, if you worked on a farm 10 years ago, and were bitten, you could easily be showing symptoms now. Some people show symptoms of Lyme within weeks of being bitten, but some don't and it can lay dormant in the body for many many years.

Some people recall being bitten, but a lot don't, a tic can be as small as a full stop, so cannot always be seen easily. Doctors will tell you that you would have to have an EM rash (bullseye rash) if you had been bitten, but please know that only 50% of people present with such a rash.

There is a blood test for Lyme, though unfortunately it is not very reliable, and can often bring up false negatives. There is a place called Igenex which do carry out the most reliable tests for Lyme, however these are still not a 100% accurate but are the best on offer.

If you have exhausted all other possibilities with your neurologist, you may wish to go and see an LLMD (lyme literate doctor) as these are the only doctors that will be able to help you, regular practitioners do not know anything about this disease or how to treat it.

It might be worth you posting on the Lyme board as well and making some enquiries there.

Good luck to you and best wishes
 
Im think the best place for you to start would be to go and see a neurologist, there are hundreds of things which could cause these type of symptoms you describe.

I think perhaps having an MRI of your brain and spine would be in order which a neurologist would arrange for you, as well as other blood tests to rule out certain conditions.

Have you been tested for thyroids, lyme disease or vit b12?
 
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