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im 23 and just found out i have ms

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Posted 8/17/2007 3:37 AM (GMT 0)
hi im very new to this and i was just wondering if you guys could give me some advice. i was just told last wk i have ms. i was in the hospital for 3 days on iv steroids and a spinal tap. im now at home on oral steroids for 14 days and i jsut feel terrible is that normal? at times i feel like i have a brick on my chest and just out of breath. i cant be up to long or my legs will start to tingle and feel blah. i have optic neuritis in my right eye and my right leg is a little wk. i feel mostly tingling in my lower half and my head just feels weird. i guess i just think i should be feeling better my now.

thanks a bunch 

Posted 8/17/2007 11:10 AM (GMT 0)

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.

Posted 8/17/2007 2:29 PM (GMT 0)
Hi Sunshine, I am 29 and was diagnosed about 4 months ago. My main symptom is optic neuritis in my right eye also. I am interested to see what degree yours is compared to mine. I got floating white spots and blurryness all the time, and have been on steroids twice, both were 1 and 1/2 hour long iv drips, 1000mg. It helped for a short period of time but I noticed I still had the white spots during that time. The side effects of them really sucked, I was up for about 3 days striaght with little cat naps after that. I was also pretty grouchy according to my wife. Let me know what yours is like if you don't mind.
Posted 8/17/2007 3:01 PM (GMT 0)

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.

thanks sunshine

Posted 8/17/2007 3:17 PM (GMT 0)

 tertle -

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.

since then when i work out to hard i start feeling the tingling but then it passes or i just feel tired and wk. in may i started seeing spots and everthing a dimmer color - i went to my dr 2 times - eye dr 5 times and my neuro twice and all i heard was it was floaters, or migraines. whats crazy in june i brokeout in a rash from strep throat and tey gave me a steroid for 5 days and my vision got better during this time but got worse after i was off of it. i could still see just at times i could see these bright lights with in my vision or just a dimmer color.

last wk i started seeing what i call raining lights in my right eye mainly and i went straight to the dr. i aleady thought i had ms because of research i had been doing i feel thanks to jesus guiding me in the right path and i took my neuro a list of ms symptoms and a list of mine - which he said he still wasnt convinced but he did a mri and saw the lesions on my head and optic neuritis. the same day the eye dr told me i passed the optic nerve test and showed no signs of it being that crazy right.

so he put me in the hospital for a spinal tap and 3 days of iv steroids - now im at home on 14 days of oral steroids. my vision hasnt got any worse but im not sure if its that much better yet. he did say it could take a while for my vision to be normal and ive read it could take up to 6mths. my prayer is it will or at least not get any worse. im not seeing any more raining spots so thats a pos. this started in may but my eye never hurt until last 2 wks ago - did yours

sunshine 

Posted 8/17/2007 5:04 PM (GMT 0)

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!!!!!!

Posted 8/17/2007 5:45 PM (GMT 0)

sunshine2165 said...

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.

thanks sunshine

I hope you are STARTING your research at legitimate credible sites, like the National MS Society website -- www.nmss.org -- where you'll find all sorts of credible information, starting with the fact that all the diet stuff you've found won't do much for your MS.  If you need to lose weight it might help, but none of the rest of it is credible, reliable, or useful to control your MS.

As for ldn -- that hasn't been approved for use for MS by the FDA, and you will have difficulty finding a doctor willing to prescribe it.  There is some evidence that it helps some people with some symptoms, and lots of anecdotal evidence that it slows progression, but until proper scientific double-blinded tests are completed (and they are underway, and the National MS Society is helping to fund them), I'm way skeptical.

  Is the "someone who uses minocylcin" a doctor, or just "someone"? Like your doctor, I've not heard of where that is generally prescribed for MS, either.

I've been on Betaseron for 14 years. It's an interferon drug, like the Rebif. Yes, it has side effects, but then so do MOST medicines, even common aspirin.

Please understand that you'll hear LOTS of stuff, and read lots of stuff on the Internet, claiming to "cure MS", and "the medical community doesn't want to cure MS but we have the cure here, just send us lots of $$ and we'll send you this (snake oil) that will CURE it"....and most of it is bogus.

There is SOME limited evidence that the Atkins diet is useful, and lots of evidence that reducing your red meat intake and increasing your fruits and veggies is a good thing -- but that's a general dietary suggestion, not one that means that doing that will particularly help..or harm..your MS.  If there WAS a diet that guaranteed it would help MS, most of us would be on it.  If there were medicines (other than Avonex, Betaserion, Rebif, Copaxone) that CURED MS, we'd all be taking them. There isn't.  Don't get fooled, and don't waste your money chasing "promises" that have no validity to them!

 


Posted 8/17/2007 7:36 PM (GMT 0)
I agree with uppitycats, be very careful especially with vitamins and supplements because you do not want to kick your immune system into gear.  I talked with my nuero last week and he recommended a multi vitamin, a b-12 suppliment and if i wanted to continue the flax seed oil.  He said he didn't buy into the rest of the stuff.  If you do buy into that stuff there are good books that are directed just for MS vitamin and herb therapies.  I got a couple good books at barnes and nobles.   Just be warry of what you read and before you try anything crazy ask your nuero!!!!!  Can't be too careful!!!!
Posted 8/17/2007 9:15 PM (GMT 0)
Hi Sunshine,

 

   Gee I'm sorry you were diagnosed with MS and such a young age too.  Give the steroids some time to kick in, sometimes they have a delayed reaction to you feeling better.  The shots can be a scary thought, but once you get started they might not be as bad as what you would think.  The side effects for the majority lessen over time too and there are methods to help in the beginning to help with those side effects should you have them. 

 

    We'll be here to help, give yourself some time to adjust to all this.  As the others have said, be cautious about what you read and check with your doctor before you make any adjustments to diet, vitamin, or treatments in general.  Welcome to the board, keep posting!

 

Kimber

Posted 8/19/2007 1:53 AM (GMT 0)
Hi Sunshine. I've 36 (37 in November) and was diagnosed in October 2006. It started with the Optic Neurotis. I started seeing the white floaters and having eye pain. I've had bad headaches for years so didn't think much of it. I finally went to the eye doc and he diagnosed the O.N. I did a round of the Steroids but had an allergic reaction to it. I decided to start the Copaxone in January of this year and have been quite successful with it. I read a ton of books and searched numerous sites (I'm an Analyst) and finally came to the same conclusion that Uppitycats came to...they are in it for the money. Plain and simple. Don't get caught up in all that. Stay focused on being healthy overall. Mentally, spiritually, and emotionally. Those are the things that will get you through this time. Whatever that looks like to you, do that. Everyone is different and handles things differently. Do what is best for you. Be sure to ask a zillion and one questions to your Nuero when you go. If they aren't giving you the answers, go some place else!! Information is good, be sure you are going to the right sources. They are a lot of great people on this site, and they can offer a lot of great information. Please remember that MS doesn't have to control your life. It does not define the person you are. You create your own destiny!
Posted 8/20/2007 3:02 AM (GMT 0)
thank all of you guys for your help. im still very leery about the rebif - most drs dont even consider alternative ways like vit. and diet its all about the drugs that will most likely cause an entire new problem. i just dont want to start the meds and regret it later. ive been reading so much from others personal experience and the diet and vit. seem to work great. im not talking about people selling items just reg. people sharing what they have done. im just going to conti to pray and know jesus will guide me in the right direction. im also going to see a chiropractor this wk - he is very involved in the natural way of healing. im very happy to have found this site - it helps to hear from you guys :)

sunshine
Posted 8/20/2007 2:52 PM (GMT 0)
Hey Sunshine!

I'm so glad u'r being proactive and looking at all angles of this! I can see how u'd feel too...drug therapy can bring other issues to deal with, but don't totally shut that door. Yes, vit and a healthy diet are fantastic and should be part of u'r treatment, but as u go continue to consider drug therapy. No, no one here is trying to push u into drug therapy (rebif), but we've all seen and know the diff that those drugs can make in a person with ms. They are designed to help slow the progression of the disease. Vit and a healthy diet should be part of that...and any life style. I am a praying woman and i'm so glad to hear u say u'r going to let Him lead u in this. I will be praying for u as well and i know He will walk u thru this. No matter u'r decision He is with u. Take good care of u'rself and please let us know how the chiropractor appt goes! Best wishes to u friend!
Posted 8/22/2007 1:00 AM (GMT 0)
rhondab - thank you so much for ur advise. im not just against rebif im just scared. im not sure if you guys are familiar with monocycline treatment for ms. ive been trying to research it and see what other people think of it. it was originally for acne but they r using it for ms patients. i would love to try it first.

 

Posted 8/22/2007 1:47 AM (GMT 0)

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.

http://www.medicalnewstoday.com/articles/15540.php

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)

http://www.sciencedaily.com/releases/2001/12/011221080824.htm

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.

Posted 8/24/2007 12:53 AM (GMT 0)

hi sunshine

i've been diagnose since I had my son in 2004. i had a ton of headaches and the ob doc didn't know why after i had him they did all the test and said i have ms.i'm sorry to say this but it was the worst feeling i've ever had i didn't know what to do. i've been on alot of different meds but if u stay on your doc and let them know everthing that u think is not in plave they will find a med that is right for u. i've have the optic neuritis in my right eys also but mine ladted for a month, and i agree with everyone else the side effects from the steroids make u not even won't to take them. i just started tysabri and i'm  having side affects right now and its dirving me crazy but i know i have alot of good days when this is over.just keeplooking for the right meds for u not what any one te;;s u is right . your body will tell u if the meds are gonna work.

take it easy 

Posted 8/25/2007 10:55 PM (GMT 0)
Hey sunshine, I too was diagnosed at early age..22 i have been fighting the fight for 23 years now up until almost 5 yrs ago i was functionable I still walk but with aide. I take avonex once weekly and steroid infusions every 3 months for 3 days. It is  very scary cause you never know what your body is going to do to you...there are so many more options today.You just need to talk to your dr.and find the course that is right for you..And I think everybody here still has some fear...(just my opinion) but in time you have ms it doesnt have you..a good support team helps as well..Pokey79
Posted 9/1/2007 9:45 PM (GMT 0)

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...

Posted 9/5/2007 2:45 AM (GMT 0)

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?

sunshine

Posted 7/1/2012 11:43 PM (GMT 0)
myfriend had ms, he said he gave up. Red meat and process foods. He told me ms decided, ALSO drink and research green tea it amasing
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