Friday, November 9, 2007

Things They Don't Want To Tell You When You Have MS

When I was diagnosed with Multiple Sclerosis I knew nothing about it. Literally nothing--I thought I was one of "Jerry's Kids," embarrassing to admit but it shows how out-of-the-blue my diagnosis was for me. Frustrated by a lack of forthcoming answers to my many questions and being a voracious reader I had to do a lot of research for myself. I wanted the answers no matter how ugly they were and I felt that the guides for the newly diagnosed got me nowhere. My MS, right out of the gate, was so aggressive that I was beyond the attacks once-in-awhile and had about 5-6 within the first year. I wanted to know everything that I could about it and what it meant for me. This is a short list of the things nobody would tell me but I found out on my own. I will expand on each one in it's own post, I just wanted to list the things that I wanted to know and nobody wanted to tell me, yet I felt I should know. I know I am in the minority with the way my disease is progressing (thank God), but there are others out there who are having similar experiences and are probably as frustrated as me by a lack of forthright answers. So without further ado here is my short list of things nobody wants to tell you:

1. MSers are 7 times more likely to commit suicide than the average person. If you have not had a run-in with the black dog of depression you need to be very thankful--it is hell, and that is not even a strong enough word for it.

2. What's my prognosis? Nobody wants to tell you what your attacks and symptoms can tell you about your future. There is some information out there about the nature of your attacks and what they can mean for your future. I will go into this in a separate post because it is a lot of information; it can be scary but I would rather know what I am facing.

3. The down side to the DMDs. They do have some downsides, but you will never hear of any of them from a rep. from the company. Like with a higher dose of an interferon the higher risk of neutralizing antibodies and higher risk of depression. Also, Betaseron has the highest incident of neutralizing antibodies and Rebif puts you at a higher risk of depression. I'm not saying there is not a lot of good with these meds, I just want people to know all the facts to make the right choice for them. I also think it is good to know what the overall reduction rate is for each of these, because they all vary. Again, this is a post in itself, which I will do, I am just giving an overview right now, it being early still and having to get a little girl ready for school soon.

4. Mental/emotional problems associated with MS. They will tell you that it does not cause any changes in behavior or if they do tell you they will say it is rare. But studies show that atrophy (shrinkage) of the brain occurs in the early stages, and any disease that leaves scars on the brain is liable to have an effect on you and your thinking/behavior, especially in the frontal lobe. When I attempted suicide, even though I had been told that MS will not cause those kind of changes, they still did an MRI on the frontal lobe of my brain to see if I had a new lesion there that was effecting my moods.

5. Lifespan. Nobody wants to tell you about your lifespan. They will tell you that it is almost close to normal, which is true for the most part, it is slightly lower than normal. I'm sure you have heard that MS will not kill you, that it is very rare for someone to die from MS; this is true. But all the meds pumped into your body will tear it down and most MSers, when not taking matters into their own hands, die from complications due to the different meds put into us. Especially as the body gets older, when you damp down the immune system it makes you that much more susceptible to getting pneumonia or other life-threatening illnesses, hence you do not die from MS but from something else.

That is all I can think of right now, but will add more if I think of them. I am off to get my Tysabri done. Remember, Blindbeard loves you (big cheesy grin would go right here).


stephen said...

straight talk - good stuff. i read early on, and found it full of straight talk - difficult to read then, but hugely appreciated. and with a sense of humor.

Shaun Lindbloom said...

I am a male and was diagnosed at age 14. It's just nice to hear from others out there with M.S. I am now almost 24 and it has been a big challenge in my life.
Thank you for your site.\
-Shaun Lindbloom

Flying said...

I was diagnosed at age 12. As little girl I had lot of trouble living with M.S. but I have passed though it and now I am 20 but still having trouble in everyday life.

Flying said...
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Anonymous said...

im scared mother was dianosed with MS when i was born ....i am mom is very strong ( she broke her whole ankle and the next day drove me to school) .....but now it has taken over .....she cries every nite now ( she thinks i dont know, but i do) ....i see her losing her self and her soul scared ........ i know she doesnt want to live she is in sooo much pain.....and a part of me doesnt want her to becuase i know its hurting her soo much and we cant get help because THE @#!$ing goverment has screwed the people with disablilies .......we cant even afford to get her check out ................ she dying and i dont know what to do .........THis is what is not said in any of the "ms" web S**** ......i love her with all my heart and what happens if she doesnt make it ....i have no father and she is my mom and THE MS IS KILLING HER ........ PS my mother is poet named J.L haddaway ( look her up on google she wrote a famous one call " when fat girls dream") and im Brett ( a girl )

Anonymous said...

53, & 12 years down the rocky road with P.P.M.S.
get focussed on one thing at a time and keep attempting it until you succeed!
more reps & low weight at the gym. do it, it works. two years of effort & I'm better than I was 2 years ago. official from my P.P.M.S. PROFFESSOR!
no such work as cant, I can it just takes me a little longer!

BeckyMcCaslin said...

When I was diagnosed it was a week after my 16th birthday. I was told that the disease was progressing at a very fast rate and my prognosis was not good. I was told at the age of 16 to pretty much forget having children and a normal life, they told me I would be in a wheel chair probably by the age of 18, if not then def by the age of 20. Later on that year I had a serious suicide attempt where the docters did not think I would make it, and if I did they were expecting some major damage from the attempt. after surviving the first year I decided that I am just going to wing it and live life to the fullest. I am not 27 not in a wheel chair and I have two healthy children. I still battle depression and mood instability, but I just take it day by day.

Healthy Life said...

Hi.... I was diagnosed with RRMS just when i turned 16 and I am 22 now.I have experienced all the symptoms in MS from head to toe-vision problems, blurred vision, double vision, Spasms, numbness in almost all my body,disability to walk,move ur hands, bladder disfunctions.. everythng.N now I am absolutely fine- dnt know till which, month, day or moment...But I feel more than any killing symptoms in MS, people around u(be it your family members) kill you all the more as they expect you to live exactly the way they do. But you know u cant due to everyday fatigues n muscle weakness.Such things cause depression and I feel this enhances your attacks. I guess you really need a healthy and lively atmosphere around you when you wanna make it with MS.

Healthy Life said...
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Healthy Life said...
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lazaro said...

I understand you very clear.My wife is going through the same problems, and we can't afford a health insurance ; eventhough they will not take her due to the preexisting condition.It sounds ridiculous to say but we had to go to Cuba to get help because here we couldn't find it.Too bad!!

hhocar said...

Hello All,
I am 48 and I was diagnosed when I was 46. I had suffered for some years with different symptoms and it not till one day when having a checkup at my doctor that he asked me why I was limping? Right away sent me to the hospital, 6 days and 6 tests later I was given an official diagnoses "MS"! So now I have a Disabled Placard and I can pretty much park anywhere. I have been depressed almost all my life, ie,when by my self, but had run several successful businesses and have be told I could be a good motivational speaker. My last opinion neurologist told me that MS is mainly caused by "STRESS",and now I want to find an antidote for stress, I am sure it "WILL" be a breakthrough. Wish all you get well soon and please do not give up. Love and respect

Anonymous said...

Just Reading this page as i am trying to link up My Daughters symptoms and reading everyrhing I can find on MS Now I am sure this is what She has as She shows quitea few of the symptoms People discribe thank You for being so canndied will now go back to The Doctor with the evidence and prove its not all in Her mind and demand tests thank You very much.

Anonymous said...

LDN low dosage nalpraxone ( may be spelled wrong) works!!
Please look into LDN. It is being hidden from drs . Our nuerologist didn't know about it either.
A friend told us about it and it is a miracle !! It was a drug that was used to help opiate addicted people to get clean! It was cleared by the FDA for 50 mg usage. It has since been discovered that if you take between 1-4 mg (low dosage) it arrests the MS symptoms without using ANY other drug... The patient feels the symptoms disappearing as early as one dosage.
It has helped my wife so much. She is like normal again. We can't believe that people don't joke about this!
Please look it up for yourself !!!! LDN has saved three people that I we personally know.

J.S. said...

i love this place, i recently found it.

Deborah Douglas-Mann said...

omg..hangin in there! truly wud like 2 die today! summer just starting and heat killing me!