newbie very worried
 

hi every one i havnt done this before so i might mess it all up sorry . i was diagnosed with peripheal neuropathy a few months ago caused by pernicious anemia and thyroid disease , the pins and needles in feet got so bad i had to go see gp who put me on folate , the pain in my legs and arms became unbearable im 43 was very active and now cant work, ive been put on a new drug called pregabalin wich makes me feel like crap ,im very worried about the outlook of all this i know it wont get better but will it get worse .

Welcome to NeuroTalk:

Can you tell us what else your doctor put you on for the pernicious anemia, and the doses? Do you know your test results? Can you get them and post them here?

Folate alone is not typically used for PN issues. In fact it may be elevated in those low in B12 (pernicious anemia patients).

hi ive been on b.12 injections for 5 years ten weekly i dont know my test results ive never asked i just go along with what they say i dont take anything as yet for thyroid as results allways come back normal but will need thyroxin in the future. and just started pregabalin for pain ,anxiety,and balance.

Well, I am a bit confused. Does that mean you get one injection every 10 weeks? or you get 10 injections every week?

What we do on this board is check out new posters who are not doing well, and have health issues inspite of their treatments.

This can mean their doctors are not doing everything they can for these patients, or that new information is not being attended to by the doctors.

In the area of B12 therapy, it can get pretty complicated.

Here is our B12 thread, with medical links:
http://neurotalk.psychcentral.com/thread85103.html

Pernicious anemia is pretty severe, and often requires careful therapy and retesting to see how the patient is responding. If this is not done properly, the neuropathy will not go away and may become severe and permanent.

i have one injection every ten weeks .my neuropathy is permenent ive been told to take folate to prevent it getting worse and pregabalin for treatment of pain and balance . im worried it will get worse as it appears to have got worse over the past few months at a rapid rate.

You have every right to be worried.

At this point you are concerned and your options are to find a neurologist to evaluate you (another opinion), and perhaps do some homework on how pernicious anemia is treated.

The peripheral nervous system can regenerate. If your damage is to the spinal cord however, which occurs with very low B12 over a period of time, that may be permanent. (combined degeneration of the spinal cord is the name when this happens).

There are many sites on the net besides this one that explain pernicious anemia and its treatment:
Here is one example:
http://www.medicinenet.com/perniciou...e4.htm#treated

If yours is severe enough to cause permanent nerve damage, your injection every 10 weeks seems odd, as the typical injection protocol is once a month, after the loading dose period of frequent injections (some patients may need them more frequently). Injections are not always needed if one does high dose oral supplements, and does them correctly.

Hello and Welcome to NeuroTalk!!
 

Happy to see you have come to be with us. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways. Please keep us up to date on your condition & needs. Check in on the following links for assistance on peripheal neuropathy:

http://neurotalk.psychcentral.com/forum20.html

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

Hi Hon!!

Welcome.

you have been given the correct forums to go to.

And don't just go along with whatever your doctors say. Ask questions, look at your B-12 levels. Post the results here.

You CAN take charge of your life and your health. It just takes a bit of work.

Best of luck

Melody