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Experience Project.
Joined: Jan 10, 2008 Posts: 14 Location: Suwanee, GA
Posted: Thu Jan 10, 2008 8:28 pm Post subject: Hello from the MS Fighter
Hello, I am a 40 year old female and native of Atlanta, GA. My first symptoms were in 2000 when I experienced episodes of dizziness and balance problems. Throughout the years my symptoms progressed and neurologist could not diagnose me. I received probable diagnose from Lupus, dystonia... and finaly, It's in my head. During this time I lost strength in bilateral UE/LE, right greater than left. My right hand is clawed. I also developed tachycardia, asthma, and neurogenic bladder. My profession went from being a Physical therapist and partner in a practice to being on full disability.
Finally, in Dec. 2007 I was evaluated by a neurologist who went outside of the box in evaluating me. Using a full body Evoked Potential he found that all my systems were involved. Using the High Frequency MRI he found brain atrophy, lesions in my brain and cervical spine and significant damage in my brainstem.
Now that I know my diagnosis I can begin my fight. _________________ A fighter of MS
Joined: Sep 30, 2007 Posts: 120 Location: Charlotte, North Carolina
Posted: Thu Jan 10, 2008 8:52 pm Post subject:
Welcome to the site.
How are you treating your MS? Have you started one of the CRABS or trying CAM. I know plenty of people that have had a lot of sucess overcoming symptoms using drug combinations with alternative therapies like chiropractic, reflexology or acupuncture.
By the way, I'm a Georgia native myself, born and raised in Columbus but I've been in Charlotte since '85. _________________ RRMS since 01/07.
Joined: Nov 24, 2007 Posts: 69 Location: South Germany
Posted: Fri Jan 11, 2008 2:14 am Post subject:
You can't fight MS, but you can learn to live with it. The great thing is to know, finally, what is wrong with you. The next step is to find a neuro you can trust, and take it from there. _________________ Bibo ergo sum
Joined: Apr 10, 2007 Posts: 48 Location: Reston, Virginia
Posted: Fri Jan 11, 2008 8:53 am Post subject:
I do not understand why you said "you can't fight MS"? Of course we can fight MS, that's what keeps me going not the fact that I have MS. We are learning more about MS every day, we have multiple drugs which we can use, we have other methods like diet and vitamins. While it is true there may not be a "cure" that does not mean we don't fight MS every day any way we can.
I agree with Dave. You have to do everything you can to combat MS. Yes, you also learn to live with it but you still have to look for ways to fight it. There are new therapies coming and until then I, for one, will continue to learn as much as I can and try whatever looks like it will work for me. Just accepting it and doing nothing for it is not an option for me.
Joined: Nov 24, 2007 Posts: 69 Location: South Germany
Posted: Mon Jan 14, 2008 5:26 am Post subject:
I suppose fight was the wrong word. When I say fight I mean what I used to do in Karate competitions - absolute commitment, glory in the pain, and extra points for blood.
I meant this; there is no cure yet (despite what the snake-oil salesmen claim), all you can do is take the medication (or whatever your belief system allows) to minimise the symptoms and slow the disease down. I can exercise to keep my body fighting fit - or something like that - but my Karate days are over. I am more Tai Chi these days.
It's no use feeling there's an alien in your body who must be expelled with violence at all costs. You have to learn to handle it, to accept the limitations it brings. Or else you end up hating your body for letting you down, and despise yourself as a loser, for not fighting hard enough. Been there, done that, still got MS.
Some day they'll find a cure. Then I can tie the black belt on again. _________________ Bibo ergo sum
Redsonja, I see that you are from Germany. Well, I am from Switzerland and please don't get me wrong when I say the following things:
I used to read in German and Swiss MS-forums and usually felt depressed and hopeless. I dislike the fatalistic attitude of the people there, that nothing can be done just accept MS which is why I started to read in international forums. I soon realised that a lot of MS cases are in fact not as hopeless as some of our uninformed doctors want us to believe.
Look, my first neurologist did never hear something about Campath! Here, in this forum are people who do extremely well with this treatment. They go on with their lives and the ugly head of MS has become a faint shadow. They do Karate again! You might say, that they don't know the long-term effect of Campath. That's true! But I prefer to have my life fully back for 10 years than struggle with a half-life for 30 years.
Or an other exemple: aplastic anemia is a very seriouse and rare condition that till today is considered uncurable. But at Johns Hopkins in Baltimore they treat sufferers with a new (actually not so new) HiCy treatment and the people get better, get their lives back! I don't advice you to get this disease in Europe because here you have no chance.
Like Fighter, I will fight too. What I hate, I cannot accept!
Last edited by amalisa on Mon Jan 14, 2008 6:15 am; edited 1 time in total
Joined: Nov 24, 2007 Posts: 69 Location: South Germany
Posted: Mon Jan 14, 2008 9:28 am Post subject:
Wow! You mean there is hope after all. I am trying a new neuro this month, so maybe he sees things differently. If there is something new then I will try it. Campath, hmm. google google... Though I must admit, I feel pretty good so far with Cop. _________________ Bibo ergo sum
Yes, there is hope! A lot of hope
If your neuro is up to date, he will know about Campath. Look at the Campath section here.
My new neuro is fan of this treatment and very keen to see it on the market as soon as possible.
Btw, I am glad for you that Copaxone is working.
Joined: Nov 24, 2007 Posts: 69 Location: South Germany
Posted: Wed Jan 16, 2008 6:02 am Post subject:
Well, I read all I could find, most especially Dr. Coles' report. Campath has much more interesting side-effects than Cop, I must say. Kidney failure requiring replacement, purpura leading to death... Hmm, I shall stick with Cop till they have the bugs ironed out, I think.
Unfortunately I am now too old to take part in a trial, which would have been exciting. But I can afford to hang about, since I "only" have RR and that very mildly.
Nice to know the drug companies are still trying, though. _________________ Bibo ergo sum
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Here, in this forum are people who do extremely well with this treatment. They go on with their lives and the ugly head of MS has become a faint shadow. They do Karate again! You might say, that they don't know the long-term effect of Campath. That's true! But I prefer to have my life fully back for 10 years than struggle with a half-life for 30 years.
