26 and going down fast.

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

26 and going down fast.

Postby SIXSIX » Mon Oct 23, 2006 10:41 am

Well hello everyone. I want to start off by just telling you whats up. I lost half of my vision in my right eye in 99 and had very slight symptoms from then until December of 2004 when I started to fall for no reason and I also would get the worst vision problems everytime I worked out. I then started to get a small pulling feeling in my right leg in about April of 05. I went to a neurologist who thought that it was parysmal disconegia where one of your limbs goes paralyzed for a short period of time. He recommended a spinal tap. I did the spinal tap Aug 1 of 05 (monday) I got meningitis the same week and was hospitilized for a month. I came out of the hospital with a terrible walking problem and my balance was also severely affected. I had a steroif treatment that did not help I was on rebif. They took me off the rebif and still could not figure out what type of ms I have.

I went to the mayo clinic last week they told me I have SPMS and that I will be in a wheelchair in a year. I'm 26 years old please help.

8O 8O
User avatar
SIXSIX
Getting to Know You...
 
Posts: 16
Joined: Sun Oct 22, 2006 2:00 pm
Location: Wisconsin

Advertisement

Postby mick_b » Mon Oct 23, 2006 11:02 am

Hi 66:

Sorry you’re going thru a rough time.

I have a different type of MS - ppms, but I’m surprised they would make such an absolute prediction for you. MS is generally not so predictable. If it helps, you’re not alone in this. Everyone here is dealing with MS each of has a different experience. I’m not so well versed on SPMS so I won’t try to second guess anyone.

I can just say that I’m glad you found this site. I’m sure you’ll get plenty of info. Hang in there, no one can predict the future.

Mick
User avatar
mick_b
Family Member
 
Posts: 40
Joined: Sat Jul 29, 2006 2:00 pm
Location: Western NY

Postby dignan » Mon Oct 23, 2006 12:59 pm

I'm sorry to hear about your situation. That does sound unreasonable to me that they are willing to give you such a concrete timeline for such an unpredictable disease. The drug options for SPMS aren't that extensive yet, but more and more things are popping up in the research pipeline (see here: http://www.thisisms.com/ftopict-1363.html ). I don't know if participating in a trial is of interest to you. If it's a placebo controlled trial, not only is the efficacy of the drug unknown, but you don't even know if you are getting the drug or the placebo. Have the doctors suggested any treatment options to you?
User avatar
dignan
Family Elder
 
Posts: 1608
Joined: Wed Aug 11, 2004 2:00 pm

welcome!

Postby jimmylegs » Mon Oct 23, 2006 2:07 pm

hi six, welcome to the site. what i can offer is an assurance that people here have lots of info and want to help you if we can!

i'm one of the nutrition gang and i'm going to jump right in. serum values for certain nutrients fit a sort of MS profile. all the studies say "the MS patients level was this, and the healthy controls' level was this" . it just occured to me that i have yet to find a study where they said the MS group's serum was higher in a certain nutrient than the control group. no difference maybe, but not higher (now i'll have to go have a look). so. you can get tests of the suspect nutrients in MS. then you can see if/where you are out of whack and work to correct. in my case so far i have corrected seriously low levels of vitamin b12, D, and iron. now i'm working on my uric acid. your situation sounds far more serious than mine, if i were you i would check out as many options here as possible. there is a ton of info available. if you're interested in getting the nutrition benefits with less personal effort on the research talk to chris55.
jimmylegs
Volunteer Moderator
 
Posts: 9147
Joined: Sat Mar 11, 2006 3:00 pm

Postby SIXSIX » Mon Oct 23, 2006 3:51 pm

Thanks for the replies everybody. I found this website the night I was told that information. The doctor told me to prove him wrong about being in a wheelchair and I will do my best to do that. I'm currently on a no sugar diet as well as taking ginko biloba,circumin,feverfew,cod liver oil, I also take proticell the worlds strongest antioxidant. I was wondering about the wheldons regime? Any suggestions
User avatar
SIXSIX
Getting to Know You...
 
Posts: 16
Joined: Sun Oct 22, 2006 2:00 pm
Location: Wisconsin

Postby Melody » Mon Oct 23, 2006 6:15 pm

SIXSIX wrote:Thanks for the replies everybody. I found this website the night I was told that information. The doctor told me to prove him wrong about being in a wheelchair and I will do my best to do that. I'm currently on a no sugar diet as well as taking ginko biloba,circumin,feverfew,cod liver oil, I also take proticell the worlds strongest antioxidant. I was wondering about the wheldons regime? Any suggestions



We are nutrition supplement and exercise. I've only know one MS'er that was told like you and she is also young. She is on some sort of cancer drug that wipes out the immune system. Be damned if I can remember the name right now. John takes curcumin too. Or actually turmeric and bromelain as it is more useable together. IMO. Also vitamin D3 prescribed by Dr. Paul O'Connor at a dose of 2000iu-4000iu depending on climate. Cold water fish or supplement in that are is worth a look. Cod liver oil you need to watch it has lots of A which can become toxic.Sarah or her name here is anecdote is the best one to ask on the Weldon regime as it's her hubby.You will find her under antibiotics. Learn to know your body inside out and you will prove that Doctor wrong. Start IMO with an allergist and remove all allergic foods as well as ones that you have intolerances to. Have a test for gluten intolerance it's separate. If you smoke QUIT, no aspartame, no caffeine eat low sat fat foods, low GI index and plenty of protein from cold water fish and complex carbs. These are opinions they have helped John but he is RRMS although O'Connor told him he was PPMS and that there was nothing he could do for him. We switched to Sunny Brooke and got a second opinion. Are they basing your DX on lesion lode or just relapse rate????
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
User avatar
Melody
Family Elder
 
Posts: 431
Joined: Sun Apr 03, 2005 2:00 pm
Location: Ontario Canada

thoughts

Postby notasperfectasyou » Mon Oct 23, 2006 7:32 pm

You have come to the right place. Information is Power.

Consider B-12 - Jimmylegs knows this stuff.
Consider Curcumin and Ascorbic Acid - see my posts in the natural approach.

If you genuinly think you are Secondary Progressive, push the doctor about the issue of when you were relapse remitting. Secondary means, your current condition was preceded by a slightly different sort of condition. Consider internet searching on the the combo treatment of copaxone/novantrone. There is a 5 year study you will want to read.

read my 101 then 102 post. Knowledge is power. Don't be a guinea pig and just follow what the Doc says, get info and ask questions. You can still follow what the doc says, but then it's not a blind trust.

If you are not yet in a wheel chair, but sinking fast, PUSH the novantrone question and PUSH HARD, relentlessly.

Find your local MS society. Go to an event and network. This is a good way to get a lot of info about Doctor's in your area. Folks will tell you who they have left and who they are with now. Socialize your way to knowledge. You can't beat this thing with brute force, it's impossible. Get positive, consider prayer, hang out here and read. good luck, napay
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 3:00 pm
Location: Northern Virginia

Postby SIXSIX » Mon Oct 23, 2006 7:53 pm

I have one small lesion next to my brain stem and that was a result of an mri on 2/20/06.

Since I had the small episode in 99 where I lost my vision in my right eye and then I did not have anything happen again till 12/24/05 since then I have lost about 80% of strength in my right leg and arm. In the last two months it has moved into my left side and is slowly taken little bit of vision in my left eye and I have lost about 40% use of my left side. I had another mri and ct scan urology exam, as well as a lumbar puncture so when they get the results I will know if anymore lesions have shown up.

Also I can probably only walk about ten feet three months ago I could still go grocery shopping. Also I do not smoke I eat a lot of salmon from fjord fishing industries out of Alaska check them out on the web. I really was hoping to find some help here I'm not close to my family and my girlfriend is real close to bailing out on me so this helps me reassure her that I will get better.
User avatar
SIXSIX
Getting to Know You...
 
Posts: 16
Joined: Sun Oct 22, 2006 2:00 pm
Location: Wisconsin

go six!

Postby jimmylegs » Mon Oct 23, 2006 11:22 pm

yes you are on the helping track here, but everyone is right, stay positive, take charge of your future, read your heart out, and take action!
jimmylegs
Volunteer Moderator
 
Posts: 9147
Joined: Sat Mar 11, 2006 3:00 pm

Postby bromley » Tue Oct 24, 2006 9:38 am

sixsix,

There are chemo options - cyclophosphamide, mitoxantrone - that are used for SP - to stabilise the condition. Rituximab is also being trialled for progressive MS. These sound scary but, on the whole, the safety profile is known. The aim with SP is to slow / halt progression.

Some have reported good results on abx and Anecdote can offer advice.

In Canada they are conducting trials with bone marrow transplantation - where your immune system is killed off and replaced with a new one. I imagine that this approach may also be trialled in the US.

I'm afraid you are caught between a rock and a hard place - you have a disease course which is deteriorating, but the options are at the extreme end and can look scary. Talk with your neuro. My other advice is be pushy - this isn't a disease where you can let others do the work. Be a pest.

Best of luck

Ian
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 2:00 pm

Postby SIXSIX » Tue Oct 24, 2006 9:51 am

My first question was about stem cell transplant and he basically said that there was a 7% chance of me getting better and a 10% chance of me dying so I really do not know what is going to happen. I have a return visit on the 13th of November so Iwill be making a list of questions.
User avatar
SIXSIX
Getting to Know You...
 
Posts: 16
Joined: Sun Oct 22, 2006 2:00 pm
Location: Wisconsin

Postby bromley » Tue Oct 24, 2006 11:20 am

Sixsix,

Here is an overview of the work being undertaken by Dr Freedman in Canada. Similar work is being undertaken elsewhere, although the protocols vary.

Ian

http://www.msanswers.ca/QuestionView.aspx?L=2&QID=20
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 2:00 pm

Postby notasperfectasyou » Tue Oct 24, 2006 11:28 am

bromley wrote:My other advice is be pushy - this isn't a disease where you can let others do the work. Be a pest.


I just wanted to second, third and fourth what Ian said. This is critical. Also, don't underestimate the value of finding a network of people who have MS who know the neuro's in your area. napay
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 3:00 pm
Location: Northern Virginia

Postby REDHAIRANDTEMPER » Tue Oct 24, 2006 1:08 pm

SIXSIX

ya have come to the right place..they have wonderful information and always know how to get ya motivated whenya are down....welcome to the site

chris
User avatar
REDHAIRANDTEMPER
Family Elder
 
Posts: 285
Joined: Mon Nov 07, 2005 3:00 pm
Location: wisconsin

Postby Minai » Tue Oct 24, 2006 6:44 pm

Hi SIXSIX,

Check your inbox. I sent you a private message, last night.

--Minai :D
User avatar
Minai
Family Member
 
Posts: 87
Joined: Sat Mar 18, 2006 3:00 pm

Next

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service