Monday, October 6, 2008

Got Multiple Sclerosis? La Tghabbi

I got diagnosed with MS early this year. It's a mystery disease and has no cure, but in most cases it's also not life threatening, or disabling right away. In most cases disabilities only start showing after 10+ years and usually only if it's left without treatment. My point for this post is that the best weapon I found yet was information and knowledge. When you know more about it, you fear it less and your plans for your future are less uncertain. Having MS is not the end of the world.

Which brings us to the issue of "teghebbi" or "hiding the info" from your friends and not-so-close family. When I first got my diagnosis I instantly became more sensitive to stories about other people who have similar symptoms, and I started asking if it was possible to call these people and ask them about MS and how it affected them so I can learn for myself. But I immediately started getting resistence and not very subtle hints that these people did not wish for others to know about their MS.

Seems to me that since MS has the possibility of disability, it becomes a taboo, sort of like cancer. Cancer is called "ilmarath ishain", as if naming it out loud is bad luck. "He Who Must Not Be Named", like Voldemort or something.

Respecting people's wishes and privacy in this matter is fine, but I found out that hiding can be harmful to you. I personally benefitted alot from being gradually more and more open about my MS. I'll tell you how.

Two weeks ago I got a call from a close friend who knew about my MS. He told me that someone who works with his brother took his niece who has MS to a clinic in Costa Rica (Institute for Cell Medicine) which does "Adult Stem Cell" treatment for multiple diseases:
1- Multiple Sclerosis
2- Diabetes Type 2 (mid-aged people who's pancreas stopped working)
3- Autism
4- Cerebral Palsy
5- Osteoarthiritis & Degenerative Joint Disease
6- Rheumatoid Arthiritis
7- Heart Failure & Stroke
8- Parkinson's Disease

I know that it sounds fishy and too good to be true. and I know that if it does sound too good to be true, then it probably is. So I took the lead and started doing my own research and found many examples of people who went there personally and had treatment and did get better. The first one being the one I talked to in person, who was a friend of a brother of a friend, who if I hadn't told about my MS, would never have occured to him to relay the information to me in the 1st place.

I even have a 2nd cousin who had MS for 6-7 years and I didn't know if it was MS or not until very recently, mainly because his Dad didn't want others in the family to ask about his condition. And only last month after me and my Dad ignored his Dad's wishes and visited him did I know for sure it was a particularly aggressive and rare type of MS where he can barely walk now. So I tell him about this new stem cell treatment and I'm surprised when he tells me that infact he knows about it and already booked a flight to try "Embryonic stem cell" treatment. There's a whole controversy around that one so I didn't press the issue with him, seeing that you create a human emryo then have it get destroyed. But I guess he was desperate.

Here's a few links of people's blogs who did go to the clinic:
Autistic child
MS cop

Here's the summary of my own case so anyone who wanted information can compare:

I'm 35yo, married with 3 children, not obese, don't smoke, don't drink alcohol.

Symptoms & History:
May 2007 - I started feeling numbness and tingling in both my feet, legs, up to my lower torso. The sensation was of hyper-sensitivity as well as less sensitivity to light touches (e.g. a cotton). with slight pain when touched. I also had some problems with balance, and fell a few times. this lasted until Nov-Dec 2007.

Dec 2007 - I developed double-vision when looking sideways to the left, this lasted for a month or so, and the tingling and numbness in my feet subsided slowly and is now almost completely gone. and no balance issues remain. But in the same time I developed the same tingling and numb sensation in the outer 3 fingers of my left hand only. slightly so in my index finger. no other symptoms remained and this sensation in my left hand remains until today.

My first MRI was done in Nov 2007 and it showed multiple hyper-intense lesions in the brain's gray matter as well as the cervical section of the spine. After that a Lumbar Puncture (spinal fluid taken) was done to test for Oligoclonal bands and it was positive. So I was diagnosed with MS in January 2008 and immediately was started on treatment using Betaferon shots every other day. I do these shots myself at home.

My neurologist suggested doing an MRI every 6 months because Kuwait was proving to be having an epidemic of MS and also because my sister (31yo) was also diagnosed with MS 2 weeks after I was, using the exact same method of LP+MRI. so my latest MRI was done 27 May 2008 and showed recession in the old lesions along with development of newer lesions. My symptoms remain the same with my left hand only. My youngest sister (24yo) also did an MRI and an LP and had small lesions and was also positive for Oligoclonal bands, but never had any symptoms, and the reason for doing the tests was my own MS and my other sister, so her neorologist was unsure if she should be treated or not, and decided to wait and do another MRI in 6 months or a year then decide. My other 2 brothers don't have any brain white spots.

I hope this was helpful. I have other information but the post is already way too long


ZaMaHReeR said...

Im sorry to hear that.
stay away from depression and nervousness.
as long as u can control ur symptoms and prevent it from getting worse, el7imdilah 3ala kil 7al.. ma tshoof shar enshallah.
I think ur right, MS becoming epidemic in kuwait..

falantan said...

Abad lako depression wala shai il7amdella :) hathi ni3ma min rabbi.
and thanks for your warm wishes

readmyblog said...

Matshoof shar inshaALLAH. Hope the treatment will be a walk in the park for you. About the theory how one should voice his troubles to reach to individuals and communities who are on the same boat, I read something about it earlier this year. It's called "Convergence of the Familiar", don't remember from which book though.

falantan said...

RMB: 3alaik noor. if you don't open up and reach out, you become pretty lonely. ya3ne no matter how bad it gets akeed fee ghairy who went through exactly the same thing if not more. so by connecting we both gain confidence and assurance.

ĐǻñĎõøðñ said...

ma tshoof shar...

tra MS is a very manageable disease if you handle it right oo you seem to be doing a great job so far. i love your attitude oo the way your discussing this openly, i dont know why people act like that :S

eshda3wa said...

inshallah malik ela el3afya

hope you get better

Dee said...

Matshoof Shaarr Enshallah :)
its scary how this is becoming veryy common in kuwait! ya3ne bedayat halsena almost ma7ad kan ey3rfa o last coupla months almost everyone knows some1 who has it!
As my frnd says ena ilzain o Elshain blMs is no matter wat u do the numbness (the symptoms) takes almost two months to heal Eachtime ..
Allah ey3eenik enshallah o Thanks ALOOOT for sharing :)

falantan said...

I think the reason people act like this is that they're ashamed of disability. lil'asaf. ya3ne especially in this day and age, no matter how disabled you are (Alla laygoola) you can still think, read, debate, write, create intellectually.

we're not in a time when we need to spend every hour of our day looking for something to eat like in africa for example. il7emdella il5air wayed wel'amer fee se3ah. ya3ne aqal ma feeha if I'm disabled kellesh agdar athker Allah o that has HUGE rewards. so I really don't see the reason for people to get depressed or scared. you can still live a VERY full life even with full disability.

mashkoora eshar mayeech wala eye kil mislim. o il7emdella so far my symptoms and my sister's have been the most minor of any MS patient I met yet.

exactly, MS has been rising in Kuwait starting 1993 according to studies made by local drs (mainly Dr. Asmahan al-Shbaily 3asalla egaweeha bel3afya). and only recently are the numbers reaching a "critical mass" if I may, where they can't help but literally bump into each others' experiences.

ya3ne our Kuwaiti community of MS support groups could have been established much much earlier (atleast 5 years earlier) if we had less "teghebbi" going on.

And the symptoms for some people can get pretty severe even WITH treatment and in not a very long time, a few years. so they need to be informed and psychologically prepared. Burying our heads in the sand and thinking everything will be OK without proper information is not only useless. it's actually harmful. :-/

manutdfanatic said...

Information always helps.

Stay strong, have faith. :)

Fa6ma said...

ma tshoof shar.

sara said...

You are trully insperational

falantan said...

faith, must always have it. the best thing ever.

eshar mayech inshalla

thank you. I hope it inspires some people to share informational more.

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