This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all-

I've had some discomfort and was wondering if it might be related to neuropathy. I was wondering if anyone who has had neuropathy describe what it was like for them. for the past several months, my chest, legs, forearms, and calves often feel achy. i've tried lifting weights and that seemed to help at first, but now seems to worsen it.


thanks in advance,

TOL

vitamin d3 and magnesium for you! could help. are you already taking these and if so, how much? and what else? any reason to suspect either of these could be low in your case?

along that line, i had a thought about low uric acid in ms, which basically means high ammonia. i looked into whether high ammonia might cause muscle pain. excess ammonia does increase urinary output of magnesium calcium and phosphorus:
"Six normal subjects showed mean or average increases, which were statistically significant, in urinary output of magnesium (+4.99 mEq.), calcium (+22.86 mEq.), and phosphate (+18.2 mM.) during 5 days of ingestion of ammonium chloride, as compared to a 5-day control period. This occurred despite differences in the intake of electrolytes, age, sex, or weight. The possible significance of the loss of magnesium during diuretic therapy was discussed."

interestingly, i found out acetyl L carnitine helps fight the effects of ammonia excess - but it doesn't put back your mag cal and ph.
"In the present study, we examined the effects of L-carnitine, D-carnitine and acetyl-L-carnitine on the neurotoxicity of ammonia. Administration of ammonium acetate (15 mmol/kg) to mice caused seizures, elevation of blood ammonia and urea concentrations, and marked alterations of brain energy metabolites. Pretreatment with either L-carnitine, D-carnitine or acetyl-L-carnitine reduced the frequency of the seizures, prolonged the time until the first fit, lowered the levels of ammonia in the blood and brain, and suppressed the alterations of brain energy metabolites caused by hyperammonemia"

and if you want your body to combat ammonia the way it's supposed to, stock your liver up with zinc and u should be able to watch your uric acid level normalize. (like mine did - notice above how the little mousy livers did what they could against the ammonia intake, driving the urea up).

JL

not taking any supplements currently. the only other factor that comes to mind is that i put on some weight, but i don't think that would cause aches in my forearms.

thanks for the idea about ammonia. i'll have to do a little research into it.

thanks again,

TOL

oh my! well do pls keep us posted - getting some baseline levels would be awesome.
ttfn,
JL

Dear TOL86,
I have alot neuropathic pain, all legs, calves in particular, and forearms. It very hard to describe, even if you don't care about sounding insane.
Everywhere on me is numb, but painful. I can take one particular area and massage it to change the sensation there temporarily. Sometimes I fing myself just kinda rocking back and forth on the couch. I find it the hardest thing to describe even to those who treat it or have it. At work I concentrate on not pulling my arms up into a contracture position and flexing, it makes the pain change.
I just got out of the hospital where I had a candyland of medications on demand..I had dilauded 1mg q4 IV, norco 1 q4 po, fiosumthin( a barbiruate)? IV tid while receiving solumedrol, xanax PRN po, neurontin 400mgs po tid, ambien 12.5QHS, then they tried a fentanyl patch.
It's true, opiods are not a good treatment for neuropathic pain. It never went away. I didn't care so much, but i still found myself rocking some.
I had started to mess with my neurontin 'cause it was making my thinking so dull, I'll never do that again. I'm building back up to 1800 mgs a day. So that, and having the 'perfect storm' of a relapse, I was in pain that caused me to be chewing the inside of my lips and breaking into cold sweats.
For me neurontin seems to be the key to dealing with this absolutely disabiling symptom. tried the mag, cal and other supps, still sticking with them just in case.
Also, swimming seems to help..alot..but I can't even miss one day.
I had asked the Neuro what the pain IS, is it death of nerves or what, he said it is phantom pain. WHA?
I hope I didn't talk your ears off, I wanted to let you know you're not alone..

Oh, I forgot wat I meant to say, as far as the lifting weights, change it up daily, but keep at it.
The strange thing I find about this kind of pain is that every thing in my being tells me not to move, stay perfectlt still, things hurt too much. But I find that if I stick with it I get some relief, it's just the crowbar under the butt thing...

.

I've got pemphigus and ms, mom had lupus

Lyon,

That's interesting. The relationship between autoimmune diseases. Hope we find the answers to all of them.

msmything-

That sounds similar to what i've been dealing with. i am constantly clenching/stretching my forearms, because they feel so achy. my left calf too. at times, also feel it in my chest and my shoulders. as i said, i initially tied it to the weight gain, but realized that didn't make sense regarding the forearms.

i haven't returned to my neuro, because i've been trying to address it with exercise and i have a regular appt with him in early december, but i probably should get in. not sure about starting a pain killer, due to the fact that some of them have constipation as a side-effect and that has also been an issue. what are your opinions re: the neurontin?

best,

TOL

...also, any opinions in massage?

I had my PCP write me a script for a massage, I'm thinking that my insurance won'tt pick it up. My chiro said he would bill it kinda vaguely for me..nothing illegal, but...the catch is , if I'm gonna do it, it has to be deep and hard, short of painful, but enough to let my muscles know they've been put on notice. None of this I'm stressed..rub my shoulders...
So, there is a very legit year long program at the Chicago School of Massage, I had a massage by one of their students a few years back...it was fiercely good...but then I'd have to get on the train to come home and I'd undo it...

Neurontin I'm not really happy about, but honestly I've had good results. I've come to the point where I realize I'm never not going to be in pain.
So i do what is reasonable for ME. My scariest symtom is intensive cognitive fog. i hate it. i can't retain, can't learn new stuff. The neurontin seems to add to it. But, I also can't think worth a slug if I hurt too badly, so, right now, neurontin + swimming is my TX. I hope the increased blood circulation to my brain due to exercise will offset the stupidity.....Pain makes me a person I don't recognize much...I don't go the extra mile as i should at work or home..and I'm not my sparkly glass half full person I've always been...
Painkillers are off the table..but I would give in to a sleeping pill if pain wakes me up....
I will let you know about the massage...

have you pain sufferers had your d3 levels tested?