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Author Topic: Peripheral neuropathy is a bitch  (Read 4578 times)

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Offline Mishma

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Peripheral neuropathy is a bitch
« on: February 01, 2013, 05:58:35 PM »
Other than fasiculations over the years I had not experienced the intense, searing pain associated with some forms of peripheral neuropathy until recently. It involves mostly my left leg-from the hip to the foot. The research/science is all over the map, especially with HIV on board.

Curious as to who else has had this experience and what you did for relief. I almost went to the ER last night the pain was so great. Is it time for oxy?
2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

Online Jeff G

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Re: Peripheral neuropathy is a bitch
« Reply #1 on: February 01, 2013, 06:46:41 PM »
Hi Mishma , I'm not certain from your post if you have been diagnosed with PN or not . The pain in your left leg could be a disk problem as well . I suffer from PN but have disk problems as well and it involves my left leg from hip to toe . Either way it may be worth looking into .

If its PN there are medications such as lyrica combined with antidepressants that may bring some relief , if you haven't tried it I would think your doctor would try and treat it with something other than narcotics as a first choice . Its rather had to advise you with what little information you provided here so far . Hope you get some relief .


Offline Mishma

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Re: Peripheral neuropathy is a bitch
« Reply #2 on: February 01, 2013, 06:55:43 PM »
I've been diagnosed with conduction blocks and demylination via EMG last year. Had all the imagining done of my spine, hips/pelvis (arthritis and hip dysplasia), muscle biopsies you name it. Funny thing is that I'm fine on the stationary bike and pumping iron but if I walk or stand too long it can come on like a bandit. Have had some great PM responses from folks. Like most of these things that effect us, it comes and goes.

Appreciate your input jg1962 as well as you others that PMd me.
2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

Offline BT65

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Re: Peripheral neuropathy is a bitch
« Reply #3 on: February 03, 2013, 09:42:05 AM »
I've had PN for years, since the early 90's.  It does not come on from standing or walking too long.  I agree with Jg that your pain may originate from something else.  Not that you don't have PN, but it doesn't particularly sound like it.   My PN pain comes from nowhere, whether sitting, lying down, or standing.

I take Lyrica for this issue.  I used to take Neurontin at a high dose (800 mgs 3 times a day), but switched to Lyrica.  It works pretty well for me, I haven't experienced some issues others complain about, such as drowsiness. 

Good luck with this.  I would have a serious discussion with your doctor to examine this issue further.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Mishma

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Official Diagnosis
« Reply #4 on: February 11, 2013, 02:44:30 PM »
Although I think something more is going on, my ID doc went with the conclusions of the neurologist who conducted my EMG last year when I presented with drop foot.

1) Motor Predominant Peripheral Polyneuropathy
2) Multifocal motor neuropathy with conduction block

We discussed the drugs recommended by you folks who had similar issues and since mine, like many of yours, waxes and wanes, he's got me on lortabs (as there known in this part of the country-hydrocodone vs oxy). He also signed my application for a handicap placard.

I'm still biking and pumping as much iron as I can, but walking/standing remains a bitch.

Of course the issue still remains: Is it the drugs were taking or is it the virus and why is it usually confined to my left leg.
2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

Offline synergyhomepage

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Re: Peripheral neuropathy is a bitch
« Reply #5 on: February 11, 2013, 08:27:11 PM »
I have had PN for about 10 years, 2 weeks ago I could harldy walk with the help of a cane and could almost feel nothing below my waist.  Then a week ago I saw my first neurologist and was prescribed Lyrica- HUUUUUUUUUUUUUUURRRRRAAYYYYYYY.


I have my legs back , feel like I havent felt in 10 years, and still feel weak , the therapy should help.  I know it wont work for everyone, but, I feel like giving the guy, or gal who came up with it a big fat valentine.  Talk to your doc, maybe you can get a sample to try.  it worked for me, i feel 20 years younger ;)



 :)

Offline Mishma

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Re: Peripheral neuropathy is a bitch
« Reply #6 on: February 13, 2013, 07:28:23 PM »
I'm glad the Pregabalin (Lyrica) worked for synergyhomepage, however in at least one fairly large (n=151 for each group) randomized, double-blind, placebo controlled drug trial Pregabalin was no better than placebo for HIV neuropathy.

http://www.ncbi.nlm.nih.gov/pubmed/20124207


Pregabalin for painful HIV neuropathy: a randomized, double-blind, placebo-controlled trial.

Simpson DM, Schifitto G, Clifford DB, Murphy TK, Durso-De Cruz E, Glue P, Whalen E, Emir B, Scott GN, Freeman R; 1066 HIV Neuropathy Study Group.
Source
Mount Sinai School of Medicine, New York, NY, USA. david.simpson@mssm.edu

Abstract
OBJECTIVE:
Pregabalin is effective in several neuropathic pain syndromes. This trial evaluated its efficacy, safety, and tolerability for treatment of painful HIV-associated neuropathy.

METHODS:
This randomized, double-blind, placebo-controlled, parallel-group trial included a 2-week double-blind dose-adjustment (150-600 mg/day BID) phase, a 12-week double-blind maintenance phase, and an optional 3-month open label extension phase. The primary efficacy measure was the mean Numeric Pain Rating Scale (NPRS) score, an 11-point numeric rating scale. Secondary measures included Patient Global Impression of Change (PGIC) and sleep measurements.

RESULTS:
Baseline mean NPRS score was 6.93 for patients randomized to pregabalin (n = 151) and 6.72 for those to placebo (n = 151). Pregabalin average daily dosage (SD) was 385.7 (160.3) mg/d. At endpoint, pregabalin and placebo showed substantial reductions in mean NPRS score from baseline: -2.88 vs -2.63, p = 0.3941. Pregabalin had greater improvements in NPRS score relative to placebo at weeks 1 (-1.14 vs -0.69, p = 0.0131) and 2 (-1.92 vs -1.43, p = 0.0393), and at weeks 7 (-3.22 vs -2.53 p = 0.0307) and 8 (-3.33 vs -2.53, p = 0.0156). At all other time points, differences between groups were not significant. Sleep measurements and 7-item PGIC did not differ among treatment groups; however, collapsed PGIC scores showed 82.8% of pregabalin and 66.7% of placebo patients rated themselves in 1 of the 3 "improved" categories (p = 0.0077). Somnolence and dizziness were the most common adverse events with pregabalin.

CONCLUSIONS:
Pregabalin was well-tolerated, but not superior to placebo in the treatment of painful HIV neuropathy. Factors predicting analgesic response in HIV neuropathy warrant additional research. Classification of Evidence: This Class II trial showed that pregabalin is not more effective than placebo in treatment of painful HIV neuropathy.
2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

Offline Mishma

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Re: Peripheral neuropathy is a bitch
« Reply #7 on: March 15, 2013, 06:32:28 PM »
My symptoms are dramatically worsening as I'm incapable of walking, sitting, or laying down without severe leg, back, arm and neck pain. CNS complications include: poor temperature regulation, chronic debilitating atypical headaches, hyperacusis and tinnitus. I've been looking at this review, which I may or may not have posted previously and I thought I would share it with you.

http://hivinsite.ucsf.edu/InSite?page=kb-04-01-02#S2.2X

The neurologist I'm seeing at the VA hospital in Columbus, Ohio is considering this diagnosis but we won't know until more tests and biopsy. The treatment is ex costly.

Inflammatory Demyelinating Polyneuropathies


Incidence and Occurrence
Patients with HIV infection rarely may develop either acute inflammatory demyelinating polyneuropathy (Guillain-Barr syndrome, GBS), or chronic inflammatory demyelinating polyneuropathy (CIDP).(49) The incidence of these neuropathies is not known; GBS is probably no more common in the setting of HIV-1 than in the general population. However, GBS at seroconversion has been reported, and has been attributed to an autoimmune attack on nerves with resulting inflammation and destruction of myelin.


Manifestations
Patients with inflammatory demyelinating neuropathies present with progressive, usually symmetric weakness in the upper and lower extremities. There is usually generalized areflexia. If the illness is monophasic with maximal neurologic dysfunction reached within the first month, it is, by definition, GBS. Patients with clinical progression of the syndrome after the first 4 to 6 weeks have, by definition, CIDP. Nerve conduction studies may show multifocal conduction slowing and conduction block and help establish the diagnosis of a demyelinating polyneuropathy. Electromyography typically shows signs of denervation in clinically weak muscles. CSF protein is usually elevated and, unlike the demyelinating neuropathies in the general population, a mononuclear pleocytosis of up to 50 cells/L sometimes occurs.


Treatment
Although no objective data on efficacy in the HIV-1-infected population are available, most centers treat these patients with either intravenous immune globulin (400 mg/kg/day for 5 days) or plasmapheresis (5 to 6 exchanges over 2 weeks) in a manner similar to that used for non-HIV-infected patients. In patients with CIDP, repeated treatment at monthly intervals may be needed to achieve clinical stabilization.(49)
2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

Offline livingmmy9lives

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Re: Peripheral neuropathy is a bitch
« Reply #8 on: May 09, 2013, 11:47:42 PM »
I have also had neuropathy type issues that atypical of your average neuropathy like semi-numbness in  the left lower arm & right hand as well as the more common burning pain associated with neuropathy and chronic migranes. I find that cymbalta does help some, especially with the burning sensation. My doctor didn't feel it was safe for me to take migrane medication along with all my other 14 daily meds. That EMG test was horrible. I won't be doing another one. Good luck.
Diagnosed 1988.

Offline Oceanbeach

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Re: Peripheral neuropathy is a bitch
« Reply #9 on: May 11, 2013, 04:43:27 PM »
I had developed some PN around 1998 but I was a patient at The Care Program at St Mary's, they caught it early, changed my regimen and I went back to "normal".  I moved to a rural area in Northern California and in 2 small town clinics in 11 years, an EKG, an MRI and 3 physical therapy (2) in small towns and ineffective. 

I had to live there and there were no other options without hours of driving.  I moved in 1999.  I was a runner and ran 2 miles every day back then.  The medical provider non-profit neglected to provide a living doctor to treat HIV.  They sent an FNP who saw the HIV patients while an MD in the Ukiah office signed off on the medical records.  I never my my doctor in 4 years of treatment.

My PN came back while I was a patient in their small town clinic.  The medical staff had never seen PN before, they liked to walk up the hall with me to watch my gait.  They made referrals, someone suggested, I purchase my shoes at BIG 5 because they sell seconds at a low price.

They referred me to a Physical Therapist next door who had no training on HIV and PN.  We had a few sessions, he said there was nothing he could do for me and suggested, I join a gym.  Within a couple of years, every step was in screaming agony and I could never run anymore.   

I moved to the nearest Title I EMA and got treatment.  While discussing PN, my new Provider said, it would heal but it will take a long time.  A few years passed, I asked that provider why I haven't healed on/with the PN, he sent me for a bone scan and found, I also have Osteopenia.  I was referred for more Physical Therapy, different Therapist, same organization, different town, same results, join a gym. 

I take Gabapentin 300mg for the PN and the Osteopenia and at night when the Restless Leg Syndrome (got that too) kick up, I try to elevate my legs higher than my heart which helps and I keep getting in and out of bed on my bad nights to stop the cramps in my feet and legs.

In the city, I have signed up for Physical Therapy at UCSF and work with a Therapist who has training on HIV and PN.  She has given me a series of exercises I can do at home without any special equipment and just the other day...  I was shopping at Macy's Mens Store, got to the ground floor and realized, I lost my cane!  I found it on the 5th floor.  Another time, I missed my cane in the morning and found it at a neighborhood convenience market from the day before.  I am improving and it is slow.  8)  Have the best day
Michael

Online Jeff G

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Re: Peripheral neuropathy is a bitch
« Reply #10 on: May 11, 2013, 05:14:36 PM »
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 .     
 http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/peripheral_nerve/conditions/small_fiber_sensory_neuropathy.html

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 .


Offline Miss Philicia

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Re: Peripheral neuropathy is a bitch
« Reply #11 on: May 11, 2013, 05:39:52 PM »
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.
"Ive slept with enough men to know that Im not gay"

Offline mitch777

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Re: Peripheral neuropathy is a bitch
« Reply #12 on: May 11, 2013, 06:00:39 PM »
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.
32 years hiv+ (oct. 2013) with a curtsy.

Offline BT65

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Re: Peripheral neuropathy is a bitch
« Reply #13 on: May 12, 2013, 04:55:03 AM »
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.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Theyer

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Re: Peripheral neuropathy is a bitch
« Reply #14 on: May 13, 2013, 04:52:47 AM »
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.
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

 


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