Help: I have been diagnosed with... - Foggy's "Invisibl...

Foggy's "Invisible Illness" Support

5,515 members627 posts

Help

Sheltie3 profile image
11 Replies

I have been diagnosed with peripheral neoropathy in January and awaiting a MRI scan in two weeks time and nerve conducting in May.

I started with pins/needles and numbness in my feet that I blamed on wearing higher heeled shoes for my Sons wedding then i noticed in my fingers running up my arms. I also have a funny sensation in my face at times. If I walk for long periods I get spasms/cramp in my feet that's painful. I'm currently on ametriptiline and naproxen.

I've found it very interesting and helpful to read others posts and look forward to the support on this page.

Written by
Sheltie3 profile image
Sheltie3
To view profiles and participate in discussions please or .
Read more about...
11 Replies
Marz profile image
Marz

Do you know your B12 level ? A result under 500 can become a neurological condition if left untreated.

Take a look at the B12 deficiency website for all you need to know.

Sheltie3 profile image
Sheltie3 in reply to Marz

I've had lots of blood tests done and they say they are 'normal'.

Marz profile image
Marz in reply to Sheltie3

nhs.uk/chq/pages/1309.aspx?...

As you can see in the above link - you are entitled to have copies of your results with ranges. You may be surprised that what you are told is normal is in range - but it is important as to where you are in the range. Bumping along the bottom of the range is not a good idea when you are looking for good health :-)

Judmilla profile image
Judmilla in reply to Sheltie3

I don't know where you are located, but lab values labeled "normal" may not actually be normal. In Europe and Asia, the cut off point for a vitamin B12 deficiency is 500 to 550. In the U.S., Medicare decreed that "normal" B12 is a level of only 200, and they will not pay for treatment if the levels are higher than that. In reality, one's levels need to be much higher than 500 to be optimal.

Sheltie3 profile image
Sheltie3 in reply to Judmilla

I live in Scotland so guessing they think normal is about 500 I will be seeing my doctor once I've had my MRI scan next week and nerve test in May.

Sheltie3 profile image
Sheltie3 in reply to Sheltie3

When I see my doctor I will ask what my B12 count was and if below 500 and they don't give me anything can I buy from the chemist?

Judmilla profile image
Judmilla

I've actually gotten much higher levels with the sublingual tablets than I did from the shots. Of course, he would only order the shots for once a month, and he wouldn't administer them himself; my husband had to do it. The shots did not raise my level much above 500, but the sublingual tablets brought it up to 1000 if I took a 2500microgram tablet every other day. If I take that every day, the level goes above 2000, which is as high as the test goes. I'm not sure what is supposed to be optimal, but I definitely want my blood levels well above the cutoff point for a deficiency, so 500 is simply not good enough, in my opinion. Of course, my doctor disagrees and doesn't see any reason why I should want it to be higher than 200. It didn't affect my neuropathy, but it cured my oral stomatitis and my ocular migraines. The latter come back if I let my blood levels go down to 1000, so I take it every day for the most part, except those days that I forget. It averages out to about 4 or 5 tabs a week.

357alldaylong profile image
357alldaylong

You may have read this post before, but here goes. About 9 years ago now I started having tingling and number toes and my doctors did all kinds of tests and finally after 10 months it was determined I had 2 ruptured disc in lower back. Surgery went well, but already too much nerve damage. Then on more meds and finally told I have neurapthy. So somewhere on this site I read about B12 injections. So I took 1 injection a day for 5 days and now 1 injection a week. This takes care of the burning and electrical shooting pains. Numbness still present and some very minor pains occasionally. Much better now. Hope this helps. If you try this 25ga x 5/8 syringe works good. Best of luck and God bless.

badger4218 profile image
badger4218

Research Alpha Lipotic Acid ( A.L.A ) just type it in to google. I was told I would suffer for life, but vit B tabs and A.L. A have totally stopped all neuropathic pain. Good luck. x

JenGorm profile image
JenGorm in reply to badger4218

Badger4218

What was you told you would suffer with that has been helped by ALA .

THANKS

badger4218 profile image
badger4218

I had a lot of nerve damage pain ( neuropathy) mainly in my hands, shoulder blades and feet, especially flashing , stabbing pains in my big toe, which would shoot to other places.Some days I could be in agony for hours with it. I was given pain killers by a doctor first gabapentin and tramadol but they didn,t really stop the pain and especially gabapentin ( which acts by blocking nerve signals from the brain) made me feel strange. I later found out it,s an epilepsy drug, which interferes with messages in the brain and supposed to stop the nerve endings from saying they hurt, it was not good for me. ALA worked for me, there are a lot of interesting things about it online or youtube.

You may also like...

Can any one help with this

now it's in all my back the doctors sent me for a mri I'm 37 and not a lazy person I like to keep...

Help please Chrons any information

Help with peripheral Neoropathy

bit then feet feel like they go into a spasm/cramp. I started with pins, needles and numbness in...

help suggestions please x

ve been in pain on my feet one more painful then the other its like the nerves inside are being...

Please read, I’m desperate for some help