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Author Topic: question about neuropathy  (Read 2631 times)

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Offline minismom

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question about neuropathy
« on: April 04, 2013, 07:49:24 AM »
With the changes, I wasn't sure where to post this.  Figured I can't go wrong in "off topic". ;)

For those with neuropathy, are you overly sensitive to temperature change?  For example, Mim will now only eat with plastic utensils.  She says that metal gets (and stays) too hot when she's eating.  She will also only drink from one of those insulated cups that comes with a straw.  She'll even bring it with her to restaurants.  If she forgets it at home, she gingerly wraps several napkins around the restaurant's cup before touching it.  I asked why she was so picky (she's a pre-teen, so goodness only knows) and she said that when she touches things that are hot or cold, it makes her fingers feel like "your mouth does when you bite into sour candy." 

So curious whether this could be the beginnings of neuropathy.  We see Doc tomorrow and will discuss it with him, but wanted some feedback from here in the meantime.

Blessings!
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Jeff G

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Re: question about neuropathy
« Reply #1 on: April 04, 2013, 09:43:53 AM »
Hi , I moved your thread in this forum in hopes that more people see and and respond .

My first thought is I'm sending hugs and love to you and your family and especially too Mini , one of the bravest girls I have ever read about .

I suffer from neuropathy and strange sensations are common with this condition . I sometime feel like water is pouring down my back or into my shoe's . I also have to be careful about cutting my hands and not realizing it , I work with stain glass sometime and have cut myself pretty deeply and didn't know it until there was blood everywhere.

Its an odd condition that can cause pain as well as diminished ability to feel pain in the same area , very odd . I developed the condition at about 10 years into living with HIV .

There are test to confirm some types of neuropathy but sometime a persons medical history and how they are feeling is all one needs to know to make a diagnosis .
Best of luck and please keep us updated . Hugs . 

Offline Ann

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Re: question about neuropathy
« Reply #2 on: April 04, 2013, 12:31:31 PM »
Hi Mum (say hi to Mini for me - I still have her valentine and think of her every time I see it).

Could you refresh our memories as to what hiv meds Mini has taken and what she's currently on? If my memory serves she was on Zerit for quite a while, which is notorious for neuropathy. Did they take her off that?

How is she otherwise? I miss hearing about her.

Hugs,
Ann
xxx
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Offline minismom

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Re: question about neuropathy
« Reply #3 on: April 04, 2013, 07:00:14 PM »
Thanks for moving me where I needed to be, Jeff.  Thank you also for the hugs and kind words.  She's been through a lot and keeps right on going.  I couldn't be prouder.

Mim is almost 13yrs poz.  Ann, she WAS on Zerit (liquid) from birth through 6wks, then back on it from 8wks (when we got her test results) until she was 7 1/2 (if AMG Mexico was in 2008 :o) - even though her genotyping at 17mths old showed that her virus was resistant to Zerit.

As to her full list of meds that's she ever taken, wow! you are really testing my memory.  She was on: Viracept, Zerit, Kaletra, AZT, one that had to be mixed with Mylanta and given on an empty stomach, 3TC, 4DT (I can't remember the number/letter combos), and I know there are a couple others that I can't think of - I'll have to pull out her files.  I know that she was passed what doctors called a "mega virus" because it was resistant to so many meds.

 Since changing doctors until now she's been on Epzicom and Kaletra (pills).  She is also a diabetic and has CP, so not sure if this temperature sensitivity has to do with either one of those and not the virus directly. 

I know that there are nerve conduction tests that she can have to test for neuropathy.  Also heard they aren't very pleasant.  I'll ask her about any other "odd" feelings she may be having.  I know that she has nerve damage (or misfires) in her optic and auditory nerves but Doc stopped short of calling it neuropathy.

Thanks for the insight.
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Jeff G

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Re: question about neuropathy
« Reply #4 on: April 04, 2013, 07:17:35 PM »
I have had a couple of rounds of nerve conduction studies and it is somewhat unpleasant , its like having acupuncture , then having a slight electrical currents applied to the needles . Not something a child would look forward to . It was more bizarre than down right uncomfortable .

Im sure the Zerit I was on for any years played a part in my case and is the unseal suspect when neuropathy pops up in someone that's been on as long as she has been .

Her doctor may have other ideas but I really don't see a huge benefit of doing those nerve conduction studies when you have a clear case of abnormal sensations , a history of HIV and meds . My last doctor treated me without putting me through the study again and it was her idea saying it just wasn't necessary with all the other evidence . 

Best of luck .   

Offline minismom

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Re: question about neuropathy
« Reply #5 on: April 05, 2013, 05:48:28 PM »
After doing a few tests in his office to check dexterity and sensitivity in her fingers, palms, forearms, shoulders, and neck, and making sure she didn't have corpral tunnel syndrome,  Doc diagnosed her with neuropathy.  He is a bit perplexed that it seems to only occur with changes of temperature and not while writing, doing perpetual motion (like typing), or holding a book.  He also wrote a lab slip to check her vitamin D and B-12 levels.  He said deficiencies in those vitamins can affect nerves. He did suggest we watch to make sure she's not losing any feeling.  He doesn't see the benefit in nerve conduction tests unless she loses feeling, or unless the tingling spreads.

 Other than the fact she's "shrunk" for the second time (Dec - 5ft 1 3/4 in. Today - 5ft 1 1/2 in.) and gained 11lbs in 4mths (up to 128.6!!!!!), she's doing great.  T-cells FINALLY went up after trending down for the last year.
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Jeff G

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Re: question about neuropathy
« Reply #6 on: April 05, 2013, 05:57:05 PM »
Thanks for the update , she has been on my mind and I was really hoping she would be spared those test so hearing that is a relief .

I want you to know also that even with neuropathy I still lead a very active life at times and I have all the hope in the world that this will be the case with Mini . Hugs , Jeff .

Offline JessieJames

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Re: question about neuropathy
« Reply #7 on: April 05, 2013, 09:58:25 PM »
My heart really goes out to your daughter.  I couldn't imagine dealing with this as a kid. 

I also began to have neuropathy about  5 years after starting ARV treatment. 

I live in Southeast Asia and travel around the region quite a bit. 

YES, temperature changes make it worse.  An oddly, too much heat is worse than too much cold.  We are in the hot season now; I cannot remain outside for more than 30 minutes.  I did NOT feel like this before the neuropathy set it.

And I also agree with some of the aforementioned posts.  Strange exertions make it worse while some more "normal" exertions don't seem to exacerbate the problem. 

So, I would suggest keeping her cool. 

It worked for me.  Good luck! I hope she feels better. Sounds like you are a great mom.     

Offline minismom

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Re: question about neuropathy
« Reply #8 on: April 06, 2013, 07:48:31 AM »
I don't see the "modify" button anymore, so I assume it's been removed.  Anyway, here's the rest of the meds Mim's taken ( most as liquids):

ritonavir, Viread, lamivudine, stavudine, Sustiva, zidovudine, and Viramune (horrible allergic reaction and X-Doc no where to be found).
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Miss Philicia

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Re: question about neuropathy
« Reply #9 on: April 06, 2013, 08:40:32 AM »
*
"Iíve slept with enough men to know that Iím not gay"

Offline newt

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Re: question about neuropathy
« Reply #10 on: April 07, 2013, 07:32:10 PM »
In short, yes, possible

- matt
"The object is to be a well patient, not a good patient"

Offline mikeyb39

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Re: question about neuropathy
« Reply #11 on: April 07, 2013, 10:51:50 PM »
i suffer from this as well,  I was only on Atripla, so my doctor believes its the Sustiva that did it for me.  Once i changed meds it got better, but i have bad days from time to time, especially when stressed

The supplement that helps me the most is vitamin b-12.  I was tested for it and doctor said i had normal levels, but i notice a big difference when i take it and if i stop taking it, it gets worse.  I take the shot once a month and in between i take the Methy B-12 under the tongue which you can buy at any supplement store.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline minismom

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Re: question about neuropathy
« Reply #12 on: August 06, 2013, 06:43:38 AM »
Big bump and an update. The neuropathy is spreading. It is now effecting her hands and forearms. Most alarming is that, as far as her legs go, she's not only losing feeling but also function. We will be walking and talking one second and the next I'm talking to myself and she's on the floor a few paces back. So far she's only cracked her knees and hip (as opposed to her head). We see a neurologist on the 20th but couldn't get in to see a neuropathy specialist until the middle of October. Prayerfully neuro will go ahead and order a lower lumbar MRI.

Other than that she's doing pretty good. She has a few more foggy days than clear. Waiting for her latest T-count. Getting ready to start 8th grade.   Next year - HIGH SCHOOL!  In just over 2 weeks she'll join the ranks of teenager. Good grief I feel old.

I hope all of you are doing well, staying dry, and, if you're up near my neck of the woods, enjoying the unseasonably cold summer.

Love and miss you all,
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Robert

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Re: question about neuropathy
« Reply #13 on: August 06, 2013, 10:58:31 AM »
good to hear from you but sorry to hear the news. I wish I had something substantial to contribute.

In a way, I do. i was cleaning off my bookshelf the other day and found my own copy of an African Lullaby as given to me by Mini herself. thanks again mini.
..........

Offline Miss Philicia

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Re: question about neuropathy
« Reply #14 on: August 23, 2013, 04:51:39 PM »
My doctors think I've developed sciatic neuropathy -- and I'd not be surprised if the cause of it is my long-term lipoatrophy specifically in the lack of fat in my buttocks. They've been like that since, oh -- around 1998 so fifteen years and as once can imagine it's not just "vanity" issues like so many who lack severe lipo think, but it effects the spine and sciatic nerves running from the rear down the legs.

I've been put on Lyrica as of last month. It seemed to help for the first couple of weeks but now it just feels like a placebo. Maybe they need to increase my dose, or maybe it's just not going to work. I've even had to resort to sleeping with a body pillow as it hurts for my legs to rest on top of each other when sleeping, and sleeping on my back also causes pain in my buttocks. It's a horrible situation and is really increasing exponentially in the past several months. As well it seems to drain my entire body/muscles so after a few hours of exertion running errands I lay on the sofa and fall asleep for a couple of hours, which then throws off my being able to get to sleep in a timely manner at night.

Yet another sucky after effect from both Zalcitabine/Hivid in 1992 and Stavudine/Zerit taken in 1994. As if having my face collapse wasn't bad enough, now it's things that actually effect being able to sit, walk and sleep. Frankly I see myself in some sort of old-folks home for the pozzies within ten years.

Anyway, hello to you and you husband -- enjoyed having a meal with you a few years ago when you passed through Philadelphia. Sorry to hear of your daughters latest similar ordeals. Be sure and let me know if you ever pass through again.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: question about neuropathy
« Reply #15 on: August 24, 2013, 07:26:01 PM »
Hi Mum, that sucks about Mim's neuropathy.  I can sympathize, though mine doesn't cause me to fall down.  It did cause me to have to give up a 5-speed sports car I had a few years back, as I couldn't feel the clutch. 

I'm on the maximum dose of Lyrica and it helps somewhat.  I hope the neuropathy specialist can help Mim.  Please keep us updated, I will be checking.  And tell Mim Poppy says hi. :)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline minismom

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Re: question about neuropathy
« Reply #16 on: September 01, 2013, 12:28:57 AM »
Wow, you've been through a lot, Philly.  Hubby and I really enjoyed your beautiful city and sharing a meal, and subway ride, with you.  Mini was also on stavudine / Zerit for a number of years even after genomic testing found her virus to be immune to it.  She went through a wasting period, but except for her face, you'd never know that now. 

She had an EEG last week and is having an MRI w/ and w/o contrast tomorrow, Sept 1st.  Her neuro doc is trying to rule out some seizure or some "growth" in her head that shouldn't be there.  She said that neuropathy doesn't usually cause falling nor does it usually effect both sides at the same time.  During her EEG, the tech asked if Mim has had an EKG.  She has, but not for a couple of years.  He said that her heart was doing some "blippy things" that may need to be checked out.  We'll see what the report says and go from  there.

Mim has virtually no energy. While she likes to walk on our woods, it's more of a stroll and sit. When we shop, she usually opts for a wheel chair.  We're leaving for the beach this weekend and has asked if we'd bring it.  She also told her dance teacher that she wants to dance but doesn't want to end up falling on stage and not be able to get back up. 

As usual, I'm the one complaining, not her. She's taking everything in stride, defining her own "normal". I hate this for her.  It's another of those things that we knew would happen, just not yet.

I will let you know what we find out when we fInd it out.

Mum (who, on a good note, found out that whatever the issue is in my head isn't a brain tumor)
« Last Edit: September 01, 2013, 12:31:50 AM by minismom »
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline minismom

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Re: question about neuropathy
« Reply #17 on: September 04, 2013, 02:09:22 PM »
Nurse called to let us know that Mim's MRI was clear. When I asked about her EEG and heart, the nurse wished us a wonderful vacation and said doc would go over all the test results on the 22nd.

www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

 


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