Do I have Peripheral Neuropathy?

[Ricardocsm]

I've been HIV for the past 20 years, i'm taking Atripla and it works well for me.  For the past month, I've been suffering with numbness on both legs, and my left arm and at times both arms.  Feeling muscle weakness, at times I feel spasm, numbness, pins and needles and shooting pain down the back of my legs.  It got to the point where I ended in the Emergency Room and was diagnosed with Peripheral Neuropathy and I was prescribed Gabapentin. 

After three days, I continue to suffer from these symptoms and after doing some research, there are numerous things I can possible have.  Not sure what I have and will be seeing my primary doctor tomorrow and will be scheduling an appointment with a Neurologist for further testing.  For now, I have discontinue taking the meds the ER has prescribed me because I really would like to know what I have before I start taking a new medication.   

I'm hoping some of you are able to give me a heads up on what to expect with this new experience.  Suggestions, ideas and past experience is most appreciated from my fellow friends. 

Thank you,   

[OneTampa]

Richardo,

Sorry to read that you are going through this.  I have no experience in this area but a few other Board Members have posted their situations.  I am sure you will hear shortly from them.

In the meantime, you may want to use the "Search" feature (3rd click option to the right of red highlighted "Home" at the top of the screen) and type in Peripheral Neuropathy to read previous Board posts on the subject.

Take care.

[Ricardocsm]

Thank you! 

I've done the search, and the research and at times its depressing. 

I look forward to my peer's response. 

Thanks for your comment I really appreciate it. 

[mikeyb39]

Hi Ricardo,
Sorry to hear your problem.  This is exactly what happened to me about 3 or 4 months ago.  My left arm started going numb, then both legs started with the spasms, then the feet started getting numb.

went to my HIV doc and he immediately said i had PN symptoms.  He sent me to an Neurologist they did blood tests, EMG.   They didn't really do anything or diagnose me with anything, basically it was a waste of time and money.  Went back to HIV doc and he assured me it was PN. 

My doc is not sure if it was the meds that caused it or if i was just one of the unlucky folks that got it.  He took me off any medications that could have caused it and hopes that it will fix itself in the next few months.  Currently i am on no NRTI's.

in the meantime i'm on Lyrica and he give me a butt load of pain pills, muscle relaxers, sleeping pills.  I'm not normally in pain its just my feet are uncomfortable most of the time.  I started taking life extentiion Mitochondrial support supplements, and reservatrol, these seem to help alot along with Vitamin b12 shots once a week.

hope everything goes well with you and hope for the best.

[BT65]

I've had PN for years, started with the earliest meds way back in '89 and following.  It was also made worse by uncontrolled diabetes for a few years. It's mostly in my feet and legs.  It's as you described-numbness, and electrical jolts that go from my toes up to my knees.  I take Lyrica, it minimally helps, but better than nothing. I was taking Gabapentin but got switched. 

My doctor did not prescribe pain pills or sleeping pills, and I'm not really sure if that's protocol for neuropathy.  Anyway, good luck.  It's liveable, but of course uncomfortable at times.  I really don't think of it too much anymore I've had it for so long.

[mikeyb39]

Thats right, Pain and sleepings are not protocal, I was just in pain when i went to doctor. I was grateful for them at that moment

[mikeyb39]

Betty is right about the Lyrica, I dont know if it actually does anything but i continue with it.  I think your name is betty, forgive me if im wrong

[Oceanbeach]

Hey Ricardo,

I have been living with PN for a decade or more and some of my experiences...  I was a patient at the Care Clinic at St. Mary's.  My toes began dragging.  I was wearing out the toes on a new pair of shoes each month.  I went to see a Neurologist and she pointed out my left side was more sensitive to the electronic charges.  I would say, this was 1998 because they changed my meds and Sustiva was the drug of choice.  I did really well with the new regimen.  My T-cells were up, my vl became undetectable, where it stayed until 3 months ago...  I was not taking Gabapentin.  I was running two miles regularly at the Huntington Beach Pier and was invincible.

I thought if you were diagnosed in a major metropolitan area which was Title I, where better healthcare was funded... If you move, I thought the funding went with you and there would never be any worries.  My family offered a small but free ranch house in a town called Kelseyville so I loaded up the car with my dog, put the top down to the 405 to I-5 for an adventure in the country.

Lake County which was historically a community of the elder and infirm offered one HIV clinic, with 60 patients and no MD on site.  The Nurses began walking up and down the hall with me to observe my "gait."  The PN came back while I was a patient at that community health clinic in Lakeport.

They sent me to a local Neurologist, the only one in town and he found nothing.  Back at the clinic, I pulled out my copy of my medical records from St. Mary's, They referred me to Sutter Health for Physical Therapy.  The Therapist was nice and I did all the exercises on all the machines... he was perplexed because as a Physical Therapist, there was nothing he could find wrong.  It was recommended< I join a gym.  There were no gyms on Clearlake.

Mendocino Community did get an M.D. who actually saw patients, who recommended< I buy my shoes at Big 5 Sporting Goods because they have good sales on shoes.

Walking began to hurt, which progressed to screaming agony with each step.  I tore out the clutch on my car and had to pull the motor.  It took months.  I often had to walk the mile to the market and a mile home with a full-grown German Shepherd on one side and a 50 lb bag of dog food on the other.  My brother lived about 5 miles away, he and his wife each drove through Kelseyville twice each week and never stopped by or offered any rides to the market. 

I moved to Sonoma County about 8 years ago and became the patient of a very fine HIV Clinic.  My provider is listed as one of the 100 most important people of the 20th century, in Sonoma County for his work with AIDS.  Dr. Kubota said the PN pain will go away but it takes time.

A couple of years later, I asked Doctor why the PN is still a problem.  Referred to another Sutter Clinic where they found, I also have Osteopenia.  There is a touch of Restless Leg Syndrome.  I was prescribed Gabapentin and referred for Physical Therapy.  We made some progress and the funding ran out so I was recommended to join a gym.

When the last of the RWCA Title I funding was paid, Sonoma County closed The Center For HIV Prevention and Care.  The patients had a transition team provided to help choose which little community they wanted to transfer to, send the records and stay in touch until each patient had the intake appointment at their new facility. I have fallen many times and made the decision to move my care to San Francisco.

Finding San Francisco had 4 medical centers which offered exceptional care, I chose UCSF.  Last year I started Physical Therapy at their Mission Bay Campus, where I got a Therapist who had training for PN and aging issues.  On the first trip, I got off the Muni and while I was walking to the kiosk to locate PT, I fell.  At the front of the building, I fell again.  My Therapist did he review, we started some exercise routines and she recommended a cane.  I got off the bus that night and fell again.

She gave me a set of exercises which I could do at home.  On my way to the next appointment, crossing a busy highway to the bus stop (with cane) I fell again.  When you fall on a busy road in Sonoma County, traffic does not do anything, no on stops for an old man with a cane who is bleeding.

After 6 months of therapy, I was asked to come back for a tune-up in another 6 months... And now, the cane is an accessory.  I sometimes walk without it and have not fallen again. 

In 17 years of living with AIDS, I have had the best of care and the worst of care, in both cases, we have to pay attention and ask questions...  I would have lived in the river cabin the rest of my life.  I put the tools to save the RWCA funding in their hands and the powers that be did not pay attention and lost the money which paid for the programs.

Everyone I know swears by Gabapentin.  Each pill is 300 mg and you can take more.  On a bad day, I take 3 pills, three times and was told you can take up to 3000 mg in a day.

I live in San Francisco with someone who loves me.  He is neg and has been involved in my care for about 5 years.  He has had more injuries and has been sick many more times than I have.     Have the best day
Michael

[BT65]

I think your name is betty, forgive me if im wrong

You are correct. 

I was on 900 mgs of Gabapentin 3 times a day.  But for me, the Lyrica is better tolerated. 

Edited to correct spelling error.

[Ricardocsm]

Thank you so much Michael for sharing your experience.  Betty, I cannot imagine how living with PN as if it does not exist. 

Currently, I'm in so much discomfort and to think to have this feeling for the rest of my life, I just can't imagine.

Right now the bottom of my foot feels soar as if I walked a thousand mile in one day.  Is it normal to feel like this?  Is this PN for the rest of my life?

I see my Neurologist tomorrow morning and I'm continuing to pray that its something else. 

Again, thanks for your continual support and input.   

[Atripla_User]

Try Alpha Lipoic Acid, B-12 sublingual, b-6 pills and Krill Oil pills. That in addition to whatever else your taking may help I have been tweeking this regimin for 6 months, and it helps give me relief.

[mikejh]

Yes you will live with this,
I have had PN since mid 90 and did not know what it was but had the tingling and burning in my feet, it spread up to my knees and hands and arms. When I was diagnosed with aids 2006 my doctor prescribed garbapentin I tried up to 1200 mg 3 times a day and it did not help, went to a neurolog and he diagnosed PN after tests and I tried Lyrica, Cymbalta and a 3rd medication and it did not help so he sent me to a pain specialist so the last 3 years I have been taking Avinza (morphine) 45 mg morning and evening and OxyContin 15 mg 6 pills a day and it works better then the other medications, I still stumble and fall when walking the pain is still there but I can manage it better then when I was on the first medications. Can't walk with a cane since I get spasm in my hands and my finger locks together when I hold something fora long period. When I lay in bed my feet feels like I have an extra skin or shoes on.
So this is something you will live with.
Mike

[J.R.E.]

Hello Ricardo,

make sure to check out the lessons on PN :


http://www.aidsmeds.com/articles/Neuropathy_6910.shtml

Try Alpha Lipoic Acid, B-12 sublingual, b-6 pills

Be careful of the B-6.  The safe amount of B-6 is 100mg per day. 

See link:


http://uvahealth.com/services/cancer-center/images-and-docs/neuropathy.pdf


Ray