[Erin524]

Ok, not sure if anyone read a couple of my other posts where I mentioned a burning sensation on my left thigh and leg.

Tonight, my thigh is burning, but not quite as bad as it had been. I took some neurontin and that has sorta helped. Didnt help much today because it's still burning, but it's not quite as bad as it was.

My skin feels warm and sometimes hot to the touch where it burns. I also dont quite feel well. I cant explain it. It's kind of an uncomfortable feeling, like I'm just not....comfortable.

I want to start crying. I really hate this sensation of burning and not feeling good. I've never felt like this before. Also, I feel like my joints are all hurting. Especially my right shoulder and elbow (like a tendinitis sensation)

I've also been dizzy today, but I'm suspecting that's from the neurontin and not an actual vertigo attack.

I am so tempted to call the neuro and beg for some steroids. Would steroids make this burning go away, or is this something that I just have to suffer thru till it's over (or learn to live with it?)

My feet dont feel quite as numb as they did last night, but my toes on the left foot feel stiff, and I feel like I'm not walking normally. I think I may have jinxed myself when I told my parents (and I think I posted here too) that the neuro thought I was better.

I'm going to (hopefully) go out with my boyfriend this weekend, but if I still feel like this, I might end up giving him a raincheck.

I hope this goes away soon. I'm going to go pop another neurontin (last one was around 2pm (friday)

I just want this to stop! ArrrrrrrgggGGGGghhhhHHHHHH!!!!!

[Erin524]

The burning got worse! (feels like what I imagine a 3rd degree burn would feel like)

I took some more neurontin, and the burning has gone down a teeny bit, but I can barely walk now. (scaring me!) I dont know if that's the neurontin making me punchy, or if this is something to freak out about.

Also, the weird numbness and tingly burning sensations has moved into an area that I dont want to have burning and tingling! (think about it...sorry if that's TMI)

I feel sick, like I want to hug a trash can, and this whole thing is really starting to scare me. My right leg is tingling. I am trying to resist calling the neurologists emergency number. I'm worried that I'll wake him up and he'll be ticked off. It's almost 5am here.

Can anyone tell me if this is how things happen when MS is about to paralyze you? I'm really starting to get more than just freaked out. This is scaring me.

edited to add:

Called the neuro's er number. The on call neuro told me to up the neurontin and take some tylenol, and also to take some baclofen for the full body shaking I'm having right now (he thought that was anxiety)

This is really freaking me out. I cant sleep, I feel like crap, if this is what MS is going to be the rest of my life, I'm not all that sure I want to do this. (not seriously thinking about doing anything, I think that's the lack of sleep and the drugged up on neurontin talking)

This really f-ing sucks. It's also the first time I've ever had anything worse than optic neuritis affect me. I had a numb leg last spring, but that was nowhere near as bad as I feel right now. This is 100 times worse.

I think I'll go stagger over to my neurontin bottle and take the extra pill that the neuro told me to take.

I just dont like feeling like this, and I really do not like crying like I am right now. Ok...staggering to the neurontin bottle on the other side of the room (why did I leave it way over there?)

[FinLady]

Sorry that it's being so rough on ya.

Wish I had some words of wisdom about the burning sensation. That is one symptom I haven't had. I do have the electric shock-like pains that feel like I'm being attacked by an invisible gnome with a taser tho.

In the winter I have to use a heating pad on my legs due to spacicity and the pain. I use the kind I can control the temp and how long it's on to keep from overheating myself. Stretching can help a little sometimes too.

I'm still mobile, even with my drop foot fun. I'm numb on my right side 24/7, intensity changing from time to time. Docs believe this is a permenant condition since it's heading into year 3 for me, and I've learned to work around it. Scary and drove me nuts at first, still frustrates me from time to time, but have accepted it the best I can. I hope it's a temporary thing in your case.

Any chance you're coming down with something? Being sick can cause the MS to go wacky for a little while.

Hope you feel better soon.

[wkikta]

The Neurontin tends to work best if you take it all the time, not just when you think you need it since it is not a pain killer. By taking it regularly any side effects should diminish.

[Gazelle]

Erin,



But I want to say that you have to learn how to RELAX with this stuff. Agonizing over everything isn't going to make any of it better--in fact, it'll probably make it worse. I say that as gently as I can and really hope you don't take offense to it. This disease sucks. You have to learn to roll with its punches or you're always going to be on the ground struggling to right yourself.

Yes, burning can travel. It can move from place to place. It can stay in the same place. It can get worse suddenly. It can feel better suddenly. Your skin can feel as if it doesn't want anything on it (when in actuality it can tolerate stuff quite well on it). You can feel hot and like YOU are burning up.

Have you taken your temperature to ensure you don't have a fever? If you have and you still feel hot like that, then it's probably all part of it.

Another thing--Neurontin takes a while to build up and work. You may not be at the optimal dosage for you. But you have to titrate up and you should titrate down with it. I never had any problems with it and I was on a 2400 mg dose at the max dose for me.

Now.... If you have a fever and you're feeling cruddy, then address the fever. And if you're getting sick, it might take you a bit to find out.

No pill is going to make everything go away. And stressing about all this isn't going to help you. Plus, you don't want to run right away to steroids until you KNOW that you're having a flare and that you really need them. They'd be my last choice of symptom management, but that's just me. And the on call neuro is probably right--it might just be anxiety that's affecting you too (as I said above).

You gotta relax, hon. From what I can see you're really agonizing over everything and freaking yourself right into a mess. Take a deep breath and do one day at a time with this. And if a day's too long, then take a deep breath and handle the next few minutes or hours. But roll a bit, give new drugs time to work. And I'm saying this from having gone through an almost year long flare where I was getting new symptoms all the time and was getting sicker and sicker and sicker and no one was doing anything for me until about 6 months into it when I went to my doc and told him that I knew that there were meds out there to treat the burning, pain, etc. that I was having. So it's not like I don't understand your fear and impatience and stress level.



Feel better, Erin.

[Kitty]

Gazelle said it best....just try to relax.

I've had the burning and the numbness in both legs at the same time. It sux......but it does go away eventually. Mine lasted about two months. My right hand is totally numb and has been for over a year. The doc thinks it's permanent. I've learned to compensate and work around it. I've also learned to write left handed!!

Like Bill said you have to take the Neurontin steadily - it's not a pain med that you take just when you feel the burning sensation. It's something that you have to find your optimal dosage of and stay at that dose whether you feel you need it or not. Pain and sensory sx are much easier to deal with if they don't get out of hand before you start to address them.

I truly believe anxiety is playing a major role with the sx you are having. Have you spoken to your doctor about an AD or something for the anxiety? It may help.

I haven't had my dx but three years but have had MS for at least five (probably much more). I used to get majorly stressed over any new sensation.....now, I hardly get upset over anything anymore. It is what it is. I'll deal with it the best I can and move on.

I hope you feel better. Try to just relax and take it a day (or hour or minute) at a time.

[Desinie]

Hi Erin,
I don't have any better advice than what's already been given. I just wanted to tell you I hope you feel better soon and that you get some rest. Extra sleep and rest really does help things. I'd also be looking to steroids as a very last resort due to all the side effects. Try doing something that you find relaxing to take your mind off things. I know how hard it is not to constantly be thinking about any new symptoms.

[lady_express_44]

I've sent you a pm, Erin . . . (in case you might not notice).

Cherie

[dmplaura]

I live in burning pain as well. Most days in fact since I quit smoking. Prior to that, I had burning mouth begin in June 2007.

My burning pain is in my head/cheeks. If you think it's horrendous, you're absolutely correct, it is.

Oddly enough, what helps me is heat. Hot bath or hot compress on the burning area. Of course, this would not be my first line recommendation for MS'ers . If you can handle heat though, worth a try.

Clonazepam is the ONLY thing that breaks through my burning pain I have. As I said however, mine's in my head (top of scalp to cheeks). Mostly on the left side, but it's definitely bilateral to a degree.

This has been going on (most recent attack) since the 6th of November for me. We're now the 15th. Last night I had to take 1mg of Clonazepam at once to break through this burning, then another .5mg later on in the evening, then .5mg at bedtime (.5mg above the prescribed amount). I was in rotten pain.

Today, burning is back, but at least I haven't had the need to dip into the Clonazepam quite yet. Some days I can take 1 and be ok, most days I'm taking 3 (.5mg each) tablets.

My GP doesn't want me taking this stuff, but it's the ONLY thing that breaks through my burning pain I get, and I've had terrible side effects on the traditional drugs to treat burning pain.

Where's this all lead to? Well you are definitely not alone Erin, keep that in mind hun. Sensory symptoms are the suck! I don't know if mine's resulting from quitting smoking (if so, well I welcome the burning pain because I'm healthier with a burning head than being a smoker) or getting the Depo shot (on Oct. 30th..and the burning began on the 6th of Nov. ugh... course, following quitting smoking Sept. 30, I had a month of dull head pain I dealt with as well!).

I see my neurologist on Monday to discuss my return to work on November 24th, and I have to tell him all about this stuff. I have this suspicion he's going to look at me and laugh and say "No way, back to the IV you go". I've been holding out since I quit smoking as far as going to my neuro about this.

I'll let you know how my visit goes, but I resisted temptation to call my neuro and get IV steroids or oral doses, because I know I can't use these as a 'fall back'. Plus I'm stubborn as heck. Clonazepam seems to do the trick, but it's depressing that I went from either taking a half to full pill of Clonazepam (.5mg max daily) to now up to 2mg last night.

I haven't taken any C today though. Burning is there a bit, but I'm toughing through it for as long as I can. It's not dreadful like it was yesterday, so I'm thinking eventually the slight burning may fade away. Let's hope at least.

Erin, I hope that your burning agony comes to a rest.

[Catch]

I haven't really got much more to add except and to tell you again, you're not alone, and as much as this stuff sucks (and it does), worrying yourself into a tizzy over every symptom (something anyone can easily do, or has done from time to time) will stress you out and we all know stress will only make matters worse.

For me my best defense is always knowledge. My first year w/MS has been tough, only because I had to learn everything. How did MS feel? Was this sensation MS? Was this sensation MS and a problem? Should I call my neuro? Do I need steroids? I think everyone has those questions in the beginning. The hope would be to slowly decipher what is "normal" for you, your body, and to learn how MS affects you. MS has taught me patience. Of course, it's slowed me down too, so the patience really comes in handy now