MS Experts - Please Weigh In!
 

Last week, I had some days of burning and pain in my upper leg. My neuro put me on steroids - I started them Saturday and finished this morning. Of course I felt great this weekend, but now my leg is painful to the touch but nothing like the burning pain. My question to you MS experts is will the pain eventually resolve or is this just something I have to live with - I have RRMS.

I am not an MS Expert, but I do know that if the medication does not do the job, you need to tell you physician and have another evaluation.

I wish you the best.

I really don't believe any of us here are MS experts. Highly qualified and informed patients? Definitely!

The use of steroids is a temporary stop gap measure without and real long term benefit except for repeating the process. You may have a severe localized case of neuralgia (nerve pain) which may be better treated with specific meds including topicals. I have to share this because it's part of my "sick" sense of humor. My first thought when reading your post was, you are so lucky this neuralgia is not on your butt. :eek: But again, that's just me. :rolleyes:

As with many symptoms of MS, this one may be chronic or come and go. No one really knows the process within each individual. The key is to deal with the symptoms the best you can when they present and keep on going with your life.

you never know if it'll go away.

In my experience so far, I'll have a symptom like that for a week or three, and then it goes away, usually to come back later in 3 or 4 months or not for a year or two. I usually just ignore the burning symptoms.

That's the only consistent thing with MS.....it's consistently inconsistent!

Makes me think of what Forrest Gump's mother told him..... but modified for MS. MS is like a box of chocolates. You never know what you're gonna get (or for how long, either). :rolleyes:

Craig, for me, that just begs the question. Do you have neuralgia on the butt. So sympathetic, neuralgia just sucks.

For many weeks, ice-pick stabbing horrible pain in my elbow made it impossible to sleep.
Previously I'd had pains in upper-back shoulder area like a build up of gas or something. Then a pain down my arm to outside of pinkie, then......Well you get it. Doctor gave me me some Vicotin. But, it's been a week or more, painfree, without any meds. I haven't done anything different I'm pretty sure. I'm PPMS, I've never remitted, just steadily progressed. But then pain jumps into equation and then just leaves???

MS. Like snow you never know when it will be, or how long it will last or how deep the pain will be.

Sooooooo true!!!

(((((New2MS)))))

New2MS - :hug: Sorry you are going through this. Steroids are generally used to treat the inflammation going on in the body not necessarily the symptoms. While sometimes this helps with the symptoms, in my experience, it never really resolved the symptoms. Some symptoms eventually went away on there own within a month, others a year, and others are a constant "companion." It is hard to predict when or if the symptoms will resolve.

The best advice I can give you is to give it some time and rest, talk to your neuro about medications for the nerve pain that you seem to be experiencing, and remember that we have all been there and are here to help you through this. Let us know how you are doing.:hug:

Please kicker, if you choose to quote me do so accurately. Your version makes me sound like I was being mean and that is NOT the case or ME. So to clarify, however, I reserve the right to be totally wrong in my personal interpretation of your comment:
You also know if I did have neuralgia in my butt you would know about it.:wink:
Absolutely! I have neuralgia and am very familiar with its symptoms and signs. Only in my case, because of my disease, there is no meds for relief and I do the best I can. Humor helps the situation, well, most of the time.

Yeah Craig, Kicker is right...it's not nice to call us PITAs..:D:p:D

ROTFLM.........O!!! :ROTFLMAO::ROTFLMAO::ROTFLMAO::Bow::Bow:

I never thought of it like "THAT!"

I used to be on monthly infusions of IVSM with my old neuro...my current neuro has only ordered one-3day infusion. I feel better temporarily, but the sxs come back rather quickly.
I actually like being on it. I can walk like a regular adult, and the spasms are reduced. But my neuro says it fries my brain, so he's very conservative with ordering it. That's why I never bother calling him now when something new crops up. Why bother?

I never said you meant that! You people are just trouble-makers.

Craig - thanks for the comments. Because I am so new to MS, my Neuro said to call when I have flares or symptoms and they will help. When I was initially diagnosed, I didn't have many symptoms and I thought maybe it was smooth sailing for me! Now it seems like I have a month of feeling OK and then two weeks of strange symptoms. In the meantime, I work fulltime and put a smile on my face most days at work. Thanks again - it is always reassuring to hear from all of you who haved been here already. You are so right, I am SO glad the buring is in my leg - it could be so much worse!

Thanks Erin - I think I will ignore them next time too.

That is exactly what my pain felt like - Ice-pick stabbing above my knee and then burning above my knee. It is hard to describe and I have definately never felt anything like it before. After three days, it got better a little at a time. Now I have sesitivity when I touch the skin in that area but nothing I can't live with. Annoying to say the least! But the pain in the beginning was pretty intense. I see my Neuro the end of March and will fill him in on my new symptoms. Thanks for your comments!

Thank you! I thought at first that the steroids were going to cure the pain but now that I am off of them, I realize that you are so right, the symptoms are still there. I am also new to BetaSeron and have only been on the drugs since the beginning of December. My Neuro's nurse said that the BetaSeron will take about 6 months to get the meds in my system. I just hope after all of this, that they will work. So frustrating! All in all, I am doing OK as I feel good most days. Thanks again for all your words of encouragement and your support

If I were you, I'd keep a log of when it happens, and how long it lasts, if you notice when it goes away or not. I sometimes dont notice exactly when a symptom disappears. I know that a few people on here, myself included, have noticed a seasonal theme to some of our symptoms.

I tend to get burning feet around Xmas time, vision symptoms in the spring and summer. This year tho, I've been pretty much yo-yo-ing back and forth in a flare every 4 to 8 weeks. I'm getting tired of it. It's a pain in the bleepity bleep.

Erin, I read your post a couple of hours ago and kept thinking about it because your first paragraph is something I share with new people all of the time. Being your own best health advocate includes what you've posted. It helps the patient stay in tuned with their body and assist the neuro or other specialist in understanding the challenges.

Thank you Erin!

You know what's weird Craig, when I've told a few people (relatives who are also in the medical field) that I keep a log (most of the time) of my symptoms, I get comments that I'm "making the symptoms stay" by concentrating on them. It ticks me off, because they're basically saying that I should just be a "good little patient and listen to my doctor and not go looking stuff up".

My neuro really hasnt done much for me except answer questions and give me a couple of Rx's for steroids, a couple of rounds of IVSM and a Rx for migraine meds.

If I look up research about new treatments or medications, or print something out for him so I can ask him questions about it. I pretty much get blown off or I get the hairy eyeball from him. (regular doctor does that too, but at least the regular doctor gives me fun stuff like PT to do. Regular doc also will listen to me first before telling me "NO!")

Sometimes I get the feeling that my neuro doesnt like informed patients. I'm giving him informed consent to treat me, I should at least be actually informed and self-educated about the treatments that I might want to try or he might want to give me.

When I've actually shown a printout of the symptom diary to my neuro, the guy just ignores it, and I wouldnt be surprised if it ends up in his "outgoing file" after I leave. So, I quit wasting the ink and paper on him. Still, at least keeping a log helps me remember when things start, so that when the neuro DOES actually want to know how long some MS crap has been going on, I can tell him.

I had been keeping little notes on the calendar on my iMac because my Windows computer has issues with Word lately, but hadnt figured out a way to transfer the information in the iMac calendar to anything or print it out. (our printer set up at home sucks) and I just this week figured out how to sync the calendar to my iTouch. So at least now I can look stuff up whenever I want to, since the Touch is pretty much strapped to my hand all the time. (just wait till I get an iPad...I'm hoping for the smaller iPad2 that's rumored to be coming...I'll have a whole diary of symptoms on that thing)

Ya know what Erin? Screw'm!!!!! :eek:

As patients with things we know are going wrong with our bodies it is our responsibility to track them. I know you are a strong woman so why not just make the guy sit down and ask him directly the last time he received CMEs for any current neuro classes. When was the last time he attended a seminar or convention? What medical associations does he belong to and is he active?

Most people would have a problem confronting a neuro like that and I understand, but darn it we need to be listened to, acknowledged, and appreciated for taking responsibility for our own health. That includes internet research, printing off information relevant to our case, new medications available, and yes, challenging his method of practice and disrespectful treatment.

I believe if I don't have trust and faith in the abilities of my doctor(s) while being treated with up front honesty and respect, we have a big problem. Medical professionals are there to provide a service to a paying customer and not treat us like they're doing us a favor by just seeing us for 10 minutes, ignoring our complaints, write a script and out the door. No! I don't think so!!!

Try this Erin, the next time you go to your PCP and neuro, take someone with you, dressed well with a note pad and pen to take notes. They would be in the exam room with you and you will notice a completely different demeanor of the doctors in how you are treated and addressing your concerns.

My wife has accompanied me to every specialist appointment since day one. A couple of these doctors were outright intimidated simply by her presence and taking notes. I've fired 4 neuros over 10 years. One particular neuro practice group I will have nothing to do with them and they actually don't want to see me either.

Oh well, you know exactly what I'm saying. Keep doing what your doing but start using it to kick some medical butt. No one cares about Erin more than Erin.

It is a pain - you are right. My first symptoms were this time last year so this just might be my trouble spot. I am good about writing down when symptoms start but not when they resolve. I will not that as well. Thanks!

That's the part I always forget, about keeping track of when a symptom lets up. Granted, they dont always let up, but occasionally they do. I need to try harder to remember to do that.

Sometimes I think answers could come from here. This is a bunch with personal invested interests in MS. Some are really smart. Well, why not? The medical community is only doing so-so with the mystery that is MS. Living with it has really tuned you "MS Experts" into the subtleties and inconsistency of this disease. I see as many interesting theories and potentially valid ideas presented here as anywhere else, Why not? A walker I think would have kept me out of a wheelchair longer is only a prototype in a Parkinson's patient's life (he built it), not available to anyone else.

None of you is influenced by Big Pharma, right?

How are you feeling today? Has the pain gone away...at least a little bit? I hope so. :)

Another suggestion...

If you focus too much on a symptom like burning skin or numbness, that can make it worse, because you're thinking about it all the time. Try to do stuff that makes you forget about uncomfortable sensations. I know, that's easier said than done.

Thanks for asking - yes it is much better. Still have some pain but nothing I can't live with.