Neurologist follow-up

[mikeyb39]

Well all,
I had been having feet problems for a while, burning and tingling, then i started having numbness in my face and groin/leg area.  The Neurologist did many tests Cat scan, MRI of the C-spine, brain, blood work.  All these tests come back mostly normal.  the brain MRI showed some 'FLAIRS' in the white matter of my brain which he advises can be due to higher cholesterol possibly due to the HIV medications or blood pressure.  i also have a small Lipoma in the right ventricle of my brain that he wants to keep an eye on in a year to two to make sure it doesn't grow, otherwise it was good.

With the EMG results and blood work, he has to agree that my feet problems is small fiber nerve damage more than likely caused by the Atripla.  He gave me some Neurontin 600mg tablets and is having me break them in half 3 times a day for now and can increase if i need.

He says the facial and groin numbness is more than likely my anxiety causing that because it has sort of gone away quite a bit now.

He is going to do one more test on me, an EEG or brain wave test to make sure that my facial numbness etc isn't any small seisures happening, he doesn't believe so but wants to rule everything out, i appreciate that.  my last neurologist just blew everything off and sent me on my way

I like this new Neurologist, now i have a gay HIV doctor and a Gay Neurologist.

Oh he also wants to do a sleep study since i dont sleep very well.  he knows i take ambien most every night and he just looked at me and said 'you know thats not a good way to sleep, so may do that someday soon, but i'm iffy on those sleep study things.  plus i'm tired of test and hospitals for a while.

mike

[mikeyb39]

Also i had that EMG about a year ago, it didn't show i had neuropathy, but he advises that an EMG will not determine small fibre neuropathy, it just isnt available to determine that.  He said we could do a nerve biopsy, but doesn't feel that its necessary since he is confident that what i'm dealing withh is small fibre damage.

he also advised me to continue taking vitamin B supplements and also alpha lipoiic acid just as a general nutrient for the nerves.

[Jeff G]

I have been diagnosed with small fibre neuropathy for about 4 years now , however it took me about 15 years to get that diagnosis . Its a little understood condition and very frustrating to deal with , mine is advanced and I now must take pain medication to deal with it .

[mikeyb39]

Hi jg,
Yeah i take pain medicatiion as well, mine mostly bothers me when i'm sitting at work or sitting in a car.  usually walking doesn't bother me too much.  i changed medications about a year ago, so i'm hoping it doesn't get any worse.   ugggg

[mikeyb39]

Its such a slap in the gut for me to be honest.  Noone i know that has HIV seem to have this problem, i feel like the lone ranger on this, especially have only been positive for two years.

[Jeff G]

It gets worse at night for me , it may be in my arms and legs or I may have moderate to severe chest pain . Before the diagnosis I would sometime sit and wonder should I go to the emergency room but I knew all I would get for my effort was a huge copay .

I get weird sensations that feels like cool water being poured over me ... but the worst is always at bedtime where I know I'm going to have severe pain or that nagging restless leg feeling that is a whole body sensation making it impossible to settle in one place to rest . I'm stable now and take two pills a day , it takes all the pain and odd sensations away .

I also felt like I was the only one with this condition . I'm thankful to know what the cause is and how to treat it so I don't have to spend so much energy wondering why .   

[mikeyb39]

I agree,  all i wanted was a diagnosis so i could at least do something about it.  it takes forever to get that diagnosis with the back and forth from my ID doc and neurologist and tests...its a pain in the ass.

i take ambien to help me fall asleep, i dont know what i'd do without it to be honest, i know its not good to take for long term sleep, but I told my doctor this is just the way it has to be and now he doesn't argue with me when i want refills, he just gives me 6month refills at a time.

[buginme2]

 plus i'm tired of test and hospitals for a while.

I know you have been dealing with this for awhile.  Glad to hear that you are starting to get some answers.  Sounds like your neurologist is pretty on top of things. 

Hospitals do get old pretty quickly dont they?  I feel ya there

[mikeyb39]

I've been taking this gabapentin for a couple days now and it seems to be working pretty well, my feet seem more manageable when i'm driving or sitting at work.  the neurologist prescribed me 600mg tablets and has me breaking them in half 3 times a day.  they  havent really made me sleepy, but last night i was able to attend a friends house warming party and my feet didnt bother me as much as they would have before.

[BT65]

I've got neuropathy, have had it for years.  I had to give up a little red Nissan sports car because my left foot couldn't feel the clutch.

[Buckmark]

I've got neuropathy, have had it for years.  I had to give up a little red Nissan sports car because my left foot couldn't feel the clutch.

I can easily imagine you driving around in a little red sports car, wearing a little black dress.    I'm sorry you had to give it up.

I'll repeat here, for both BT and mikeyb and anyone else who has had neuropathy, that they might want to try taking acetyl l-carnitine (it's an nutritional supplement / amino acid).  I know several pozzies with neuropathy who swear by it, as it rescued them from living hell.  Same for a friend I know who has diabetic neuropathy.  It's certainly not a guarantee, but then again, what is?  Google it, and you'll find tons of articles.  Here is one you may want to start with: http://www.ncbi.nlm.nih.gov/pubmed/17696590

If you decide to try it, make sure you purchase acetyl l-carnitine, and not simply l-carnitime. 

[mikeyb39]

hi all,
just a little follow-up on my neuro issues.  i had been not only suffering issues with my feet, but also numbness in my face and arms etc.  My neurolgist did tons of tests CT scan, MRi of brain and C spine, EEG.  No signs of a stroke or infarct, no specific lesions that would indicate any MS type issue etc.

 my neurologist is certain the cause of the facial numbness and arms is due to my migraines, which have been getting worse in the past 6 months.  My anxiety also plays a big role in this as well

The feet issue, even-though Neuropathy didn't show up on the EMG, he believes i have small fibre nerve damage most likely due to something that was in the Atripla i was taking.  He suspects that it will eventually level off and probably not get any worse if keep the virus under control, but more than likely will never be back to 'normal' again.   He started me on some neurontin to help with the feet issues and we will go from there.

least i'm finally starting to get some answers.

[BT65]

I can easily imagine you driving around in a little red sports car, wearing a little black dress.   

That's cute.  I haven't worn a dress in years, and don't own one.  I guess that's because it wouldn't look good with a knee brace. 

I take Lyrica for the neuropathy and it works as well as anything else.  Of course the years of uncontrolled diabetes just exacerbated the issue.  But I've had it since, like the middle 90's I believe.