Hello, once again...

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Hello, once again...

Postby sou » Sun Dec 21, 2008 10:22 am

Hi all.

I have been a (silent) member of this group a few years ago for a very brief period of time and I am back, once again with a new nick. Once again, I intend to be quiet because I am over depressed and I don't want to "infect" anybody else with my suicidal thoughts.

I am male, 28, with MS since 17 and maybe earlier. I used to be ambulatory, but a year ago, I had a relapse which just ruined my life to a point I 'd rather not continue with it. A small lesion (about 5mm) under the 1st thoracic bone of the spinal cord, which caused severe spasticity and transformed me from a "normal" person to a wreck, both emotionally an physically.

In my opinion, the worst symptoms of MS are neurologists and physiotherapists. Actually, I know of no disease a neurologist can cure. In addition, physiotherapists cause a thousands tons of effort for a gram of improvement. Fair trade.

I am already on 2 antidepressants, 45 mg mirtazapine and 100 mg sertraline. Very effective, indeed. Just like any other meds I have taken so far, except antibiotics. My opinion is that patients should pay for their meds AFTER the result. Isn't it an irony that no company could stand such a payment method? Doesn't this indirectly admit that most meds are useless?

Thanks for accepting me in your wonderful family, once again.

Sou
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Postby cheerleader » Sun Dec 21, 2008 11:44 am

Dearest sou...
You cannot infect anyone with your pain. Please share here, now. Your impulse to come here today is a good one. MS has taken so much from you. It is not fair. People here understand.
I would ask you to hang on. To tell someone who loves you how much you are hurting. Do not try to carry on alone.
I wish you peace,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Welcome back, sou

Postby lyndacarol » Sun Dec 21, 2008 6:01 pm

We all want to help you, but, unfortunately, we can't help ourselves. If we were completely honest--we appear to be a sad lot. The best we can offer is understanding (Most of us have shared your situation, or your thoughts, or your fears -- or ALL of the above.). And we have hope, unfounded perhaps, but hope nonetheless.

We welcome you to this club that we hope to disband soon. Express your feelings--sometimes it helps just to vent. Something you say may spark an idea in another. You obviously can use the Internet. Maybe you can find info that will help us all. Who knows if that is the purpose for being here today? I'm glad you've come here!
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Postby sou » Mon Dec 22, 2008 2:50 pm

Hi all.

Thank you for welcoming me. Today I am less depressed than I usually am. I am quite alone on this MS thing. Alone, in terms of having a doctor I can trust. I don't trust my neurologist at all and I can't find a better one. I have tried 3 more but I don't like their thoughts about the disease. My neurologist was the one that had not directly told me my diagnosis, despite the fact that I was 21 at the time, meaning an adult in Greece, where I live. He is the same person that insists that my symptoms will eventually subside, but who trusts him? Subside? After a year? Nah! I have MS but I am not an idiot (yet). I have lived with doctors and have taken several of their university courses. What I think about them is: "The only bearable pain is the pain of someone else".

I can't accept the "autoimmune" dogma. Unless I see proof. I attend a post-grad course in bioinformatics, which enabled me to talk about MS with several professors, doctors, physiologists and biologists. What makes me hopeless is the fact that I have taken a course in pharmacology and (yikes!) in basic pharmaceutical financial planning. I really doubt that they will ever find a cure. Sincerely, pharmas make drugs, not cures. And, contrary to the common belief, the rate of progress in medical industry is declining, not improving. In 1989 about 25 new drugs were introduced. In 2005, I think, about 5-6. (data from a study contacted by the well respected PriceWaterhouse, can't find the link right now) In addition, I can't find a disease that has been cured in the last 30 years, so why now?

The greatest advance in medical industry has been the introduction of anibiotics, which saved billions of lives. Lives continued with high quality. I am a very strong supporter of euthanasia and I 'd like to do it when needed. I believe that what counts in life is the quality, not the quantity. I am mostly a neo-Darwinist and consider life as a wonderful expression of matter. Wonderful, in terms of its variety and its ability to generate thought and reason through complex neural networks. I don't want to make enemies here! I don't reject Gods and religions. I just consider them unrelated to MS and fully respect the beliefs of everyone.

In MS, I can't see the difference of using the CRABs, Ty and Novantrone. Huge side effects and injection inconvenience, that I doubt if the degradation of QoL makes them worth taking them, since altering the way of life can have similar effects. All meds are lesion-reducto-centric, without really considering the effects on the real QoL. As a user of interferon for many years, I have nothing good to remember about that.

In my opinion, unless MS is a circulatory disease, it won't be cured in the next 25 years. I could bet my head on that, however it's a bet I really want to lose!

Thank you for listening about myself. I only wanted to let you know me better and I would me more than happy to let me know you better, too.

Thank you all!

Sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Glad to know you, sou

Postby lyndacarol » Mon Dec 22, 2008 7:32 pm

Sou--With your comment,
I can't accept the "autoimmune" dogma.
you fit in here perfectly! There are several of us who think that the autoimmune hypothesis just doesn't answer the questions. We embrace many different hypotheses--feel free to join in one or present a totally new one.

I do not agree with your assessment:
I really doubt that they will ever find a cure.


I know that scientists are working on different angles. I feel that one is on to something. My own personal hypothesis is that excess insulin (hyperinsulinemia) starts the MS cascade by damaging blood vessels and thickening and stiffening the smooth muscles. I encourage you to limit your dietary intake of sugar, carbohydrates and starches. (These promote insulin secretion.) A healthy diet will not hurt you--many medications will.

Thank you for letting us know you better. You have much to contribute here! By the way, keep looking for a compassionate, understanding doctor--he need not be a neurologist necessarily. A general physician or internist with the proper heart can serve well .
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