I'm very sorry that you've had to be diagnosed with MS at age 23! That must be a huge shock to you and your family.
What you are describing are pretty typical MS related symptoms, and symptoms related to the steroid treatment. When you have a chronic illness like MS (and a bunch of others) you may always experience some symptoms, and with MS, the numbness and tingling are common to many --if not most -- of us. You'll learn over time what "feeling better" is for you -- it's different for each of us, depending on how long we've had MS, and how mild or severe our particular situation is.
There is some good news, though -- MS is manageable, and more manageable these days with the various meds now available, and new ones being developed all the time. I don't know if your doctor has told you about them, or made any suggestions as to what your next steps should be, but I suspect you'll be having those conversations soon. Those of us who've has MS for a long time -- I've had it longer than you are alive, 24 years, now! -- didn't have those advantages when we were first diagnosed. I
When do you see your neuro again? I suspect it will be once the steroid treatments are over (and they have a host of sometimes unpleasant symptoms themselves, but do help to shorten a flare, or exacerbation, and seem particularly useful when you have the optic neuritis). Do let us know what the doctor says, and we'll help with various treatment options if we can.
hi there - they have spoke with me about meds but im so scared to take them :(
my neuro wants me to take rebif and i just dont know if thats best. ive been hearing alot about minoclycline and lpn i think? my dr hasnt even heard of mino. but ive read and chatted with someone who is taking it. he seems to think my case isnt to bad from looking at me but he hasnt got my results back from my spinal yet so im still scared that this is going to be a bad case of ms.
i guess im so worried because i feel so bad right now but i keep telling myself that doesnt mean im progressing it just means its a bad time and maybe to because of my steroids. what med. r u taking if you dont mind me asking?
ive been doing lots and lots of research and ive found many places that tell you to modify your diet to the fullest - no dairy - very little to no red meat - nothing fried - little caff. - no way never art. sweetners very little sugar other than honey - lots of friuits and veggies - fish - chicken. then all the vit. from cod liver oil - probiotics - immune bulider - mega b - and colon clense.
normally i wouldnt take things to this limit i just feel like this would make a big diff. from listening to others experiences. i would your sugg. on it.
two years ago i started feeling tingling when i looked down and on one place on the left side of my head. i let it go until i woke up feeling tingling that started in my toes and moved up to my thighs. my neuro thought i had gilliam briea SP but it all went away a couple of wks later. during this i did feel terrible but it assumed it was jsut because i was so stressed out about it. he did an mri of my spine without contrast and nothing showed up so he thought it was just some type of nerve thing.
Hi, I am 28 and just found out in April that i too have MS. I didn't have optic nueritis but instead i had slurred speech, I couldn't write with my right hand and both arms felt like they weighed 100 pounds each. It was very scary but I went to physical, occupational and speech therapy and i am back to normal again!!!!!
My doctor recomended Betaseron for me. I started it in May and although it scared me to do it at first it is nothing now. I do it every other day and it doesn't really even hurt. You don't see the needle because you use an auto injector pen and it may sting for a minute but thats it. I had a few side effects but nothing major!!!!!
I started doing pilates at a local studio and that really helps staying in shape. It doesn't take a ton of energy so on the days i am drained i can still go and feel good afterwards!!!! Good luck and if you have any questions let me know. I haven't been diagnosed long but i have done a lot of reading about it and feel like i know quite a bit about it now!!!!!!
I did a bit of research. Maybe if you look for minocycline (not monocycline) you'll get better results. Here is one source...it's from the drug company that "discovered" it's use for MS, but even they suggest that it isn't really proven effective yet. They're still working on it.
and another source, also with a lot of cautionary words, like "may be useful"...and "works in mice but we're not sure about humans" (that's a paraphrase)
and a third source: http://brain.oxfordjournals.org/cgi/content/abstract/125/6/1297
You said you were concerned about rebif because of the side effects. Note that long-term use of antibiotics ALSO come with side effects, an obvious one being that you become immune to antibiotics, and if you should develop other infections, it becomes difficult if not impossible to treat them.
I don't think any of us like to take drugs. But the drugs now prescribed for MS -- Avonex, Betaseron, Rebif, etc., have been around for years (I've been on Betaseron for 14 years now, and it has been around longer than that!), and have not shown to have any long-term negative effects.
Anyway -- I put this into Google (you can use any search engine, of course) to find these articles, and there are more:
minocycline + multiple sclerosis
You might want to print out the articles and share them with your doctor.
Hi Sunshine - I'm new to the forum too... not new to MS. I've had it for 22 years. My onset was at age 22 and my formal diagnosis was at age 26. I'm sorry to hear about your diagnosis. There are many options available for you now - almost too many it may seem...
Just an FYI... I read mention of minocycline in this thread. Maybe you could ask your neuro about getting on a clincal trial for Fingolimod. It's an oral medication that's been used for transplant patients and it was discovered, I guess, to have a positive effects on MS. They seem to be having some good success with it. I'm reaching for a new injectable therapy now, but my neuro encouraged me to do a clinical trial for Fingolimod. I'm too insecure to try it... but maybe something for you to talk over with your Dr.
Good luck! and God Bless...
april thanks for your help - ill do some research on that med and see what i find out. what seems to help you the most?