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Peripheral neuropathy is a bitch

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Jeff G:
If you have lived with HIV long enough you will eventually encounter a health care provider that only offers a blank stare when you explain your current set of symptoms and I have found that PN symptoms often earns the blank stare treatment .

I lived with mild to severe pain for almost 20 years now and I just got a definitive diagnosis in the last 4 years . I have small nerve fiber PN but I had just about given up trying to find out why I hurt so bad when I got a referral to a neurologist that had treated my kind of PN before . I came in with a list and speech prepared about what was going on and how I have been checked out by so many doctors , she came in and told me that she read my extensive history and then went on to explain my symptoms for me and gave me the diagnosis , I was stunned and very happy to know why I had hurt for so long .

I have found the John Hopkins and Mayo Clinic web sites to be an excellent source of information on PN , both sites have helped me to understand why and how this is happening to me .

Miss Philicia:
I'm having a second nerve conduction test done in a couple weeks because my podiatrist thinks the lingering nerve issues I have may be small nerve PN. I'm also going to to discuss the fact, which I've actually never mentioned, that sometimes my speech can become slurred. It used to happen more than it currently does and I used to write it off to drug use but I haven't done much of that for a decade. I'm just not sure what to blame on HIV and what is just my separate foot issues that are genetically inherited from my mother and have nothing to do with HIV. I guess in the end it doesn't matter.

I was up late again last night because my nerve pain kept waking me up. In the meantime they're putting me on some drug compound topical transdermal pain formulation that you don't even go the pharmacy to get.

I had PN for a very short time many years ago.
Luckily my ID doc had warned me to mention it to him at the first signs.
Switched meds and it went away quickly. (in a month or 2)

My empathy goes out for those of you who have to deal with this on a daily basis.
And to struggle with the medical ignorance is, well, sad to say the least.

Dealt with neuropathy for many years, made worse by my not controlling the diabetes for a few years.  Was on Neurontin, now Lyrica.  I had to give up a 5-speed car because it got to the point where the left foot could not feel the clutch.  I still feel it every day, though it's not as severe as it's been in the past.  The pain, that is; the numbness is still always there.

Had it for years complected by Bone pain that has been put down to statin side effects, Just came to the end off a 4 day blinder.

What I hate most bout it is how it dominates the day, one off the things that can help me is diazipan small 2mg dose with hydromorphine 150mg this is on top off the Fentalyn patches I wear and the daily venlifaxzine (usually an anti- depressant )

Off course you could argue I,d feel nought on that lot , but it just seems to "soak" up the pain you are still aware its there just not concerned by it.

My clinic has for years had pain control consultants originally bought in from the Hospice movement.

This specialization is growing in the UK if you have access to one use them , truly changed my life.


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