What do I do??? Please help...

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

What do I do??? Please help...

Postby ShakyJay » Sat Jan 30, 2010 9:26 pm

I have been diagnosed with RRMS for about three years now. On thursday I had another relapse. This one is the mother of all relapses for myself. Both legs up to mid torso, and both arms down to the finger tips are numb. I have taken my second dose of steroid treatment (I know controversial in and of itself) and am taking the third one tomorrow morning. This has sent me in a downwad spiral. It got me thinking about not being able to walk as it is hard as heck now, running into things, tripping over things and typing (which I do for a living) is very problematic.

I don't know what I want, or what I am looking for, maybe just someone to say it will all go back to normal, or it will pass. I know there are worse people out there than me. Is there anything that I can do to make the relapse go away quicker? Has anyone been able to find anything that helps, besides just time? Trust me I am desperate and hate feeling this helpless, I just need someone to tell me what to do and I will do it.


Sorry if none of this makes sense, I just don't have anyone locally to talk to about this sort of thing. Just looking for some help/advice. Any suggestions big or small would be greatley appreciated.

Thanks again,
Jason
User avatar
ShakyJay
Getting to Know You...
 
Posts: 19
Joined: Fri Jan 08, 2010 4:00 pm
Location: Kansas

Advertisement

Postby Algis » Sat Jan 30, 2010 9:43 pm

I strongly suggest you to look into LDN http://www.thisisms.com/forum-10.html - It really helped me and many others with no side effects (for me) or very little (for some).

Good luck shakyjay - We are all here together in the same raw boat :P
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

Postby jimmylegs » Sun Jan 31, 2010 4:44 am

j sorry you are having a bad go right now.

if you are interested in nutritional support, that's my thing.. there are lots of books out there on diets for ms.. i don't follow any of them myself, but i do have a particular set of rules of my own.. lots of info out there on nutrient intake requirements for ms patients.. you can get them in you via food if possible, and make up the difference with supplements. not cheap supplements but good ones. still costs less than drugs!

i have included my signature links, lots of great info on options for optimizing nutrition in ms.

HTH,
jimmylegs
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 8944
Joined: Sat Mar 11, 2006 4:00 pm

Postby ShakyJay » Sun Jan 31, 2010 11:35 am

I realize that there are drugs that I can take...I take fish oil every day and a multi vitamin. I am starting Tysabri hopefully in the next couple of weeks. I was wondering if there is anything that helps a relapse end quicker?

Is rest the best medicine? Is doing everything normal the best? I can't really work out right now as much as I would like to.
User avatar
ShakyJay
Getting to Know You...
 
Posts: 19
Joined: Fri Jan 08, 2010 4:00 pm
Location: Kansas

Postby lyndacarol » Sun Jan 31, 2010 1:05 pm

Jason -- just as jimmylegs has chosen nutritional support as her focus, my recommendations are for a diet (low in carbohydrates, starch and sugar) that will lower the level of insulin. I also recommend that you read as much as you can on this disease. There are also numerous books on diet and MS: The Multiple Sclerosis Diet Book by Roy Swank (MD) and Barbara Dugan; The Gold Coast Cure by Andrew Larson (MD)and Ivy Larson; and others.
User avatar
lyndacarol
Family Elder
 
Posts: 2223
Joined: Thu Dec 22, 2005 4:00 pm

Postby ShakyJay » Sun Jan 31, 2010 1:10 pm

I was on the swank diet and lived by it religously for about a year. I think that it helped, but I still had a relapse while I was on it. Now I just watch what I eat, limit my red meat intake, and supplement it with vitamins. I think all these things are great but it does answer the original question I have.

Is there anything that anyone has done that helps relapses end quicker? Is rest the best? Is fasting a good idea during these times, sticking to a liquid diet full of broth's and water to cleanse the system?
User avatar
ShakyJay
Getting to Know You...
 
Posts: 19
Joined: Fri Jan 08, 2010 4:00 pm
Location: Kansas

Postby lyndacarol » Sun Jan 31, 2010 1:34 pm

Jason -- From my doctors, I was always led to believe that a course of glucocorticosteroids (steroids like prednisone, Solu-Medrol, etc.) would speed me through an exacerbation, not necessarily changing the ultimate course of the disease. Now, from my reading and belief in an insulin hypothesis, I know that steroids increase glucose in the bloodstream, which results in higher insulin levels.

So now I regret having taken steroids about three or four times in the past -- in fact, I think it may have lead to worsening of my current condition.

Neither I nor anyone here has the definitive answer to your questions. We are all searching. Personally, I think being as active as possible would be more beneficial than rest. Some people have observed symptom improvement by severe calorie restriction, so maybe broth would be a good idea. I see it as limiting blood glucose and resultant insulin. Who knows what mechanism can be at work!
User avatar
lyndacarol
Family Elder
 
Posts: 2223
Joined: Thu Dec 22, 2005 4:00 pm

Postby ShakyJay » Sun Jan 31, 2010 1:47 pm

Thanks lynda,

I guess that I am just frustrated at the whole situation...I hate feeling helpless and not knowing what to do to resolve the problem. I think that I am going to rest today, as the steroid treatment made me kind of exhausted for some reason. I know that there is a great debate on steroids, I have read several articles about it. This was my first treatment on intervenous steroids-and God willing my last.

I don't really know what to do now. I am going to try the broth thing, and do a strict caloric reduction diet for a few days and see if that helps. I just didn't know if someone had any ideas at all.

I guess from this relapse I have learned that I don't want to have another one-haha-I am planning to be going all out in doing my due diligence as far as getting on a list for the CCSVI treatment/surgery, talking to my neuro, and just doing what I can to prevent any further relapses. I don't like this feeling, and don't want to feel this way again.

One leg was fine I could deal with that, but when it spread this quickly for no apparent reason, that's definitely an eye opener.

Jason
User avatar
ShakyJay
Getting to Know You...
 
Posts: 19
Joined: Fri Jan 08, 2010 4:00 pm
Location: Kansas


Return to General Discussion

Who is online

Users browsing this forum: No registered users