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1313843 tn?1275021437

First post

Hi All,
I am here to see/learn more about M.S. I am a software developer.  I've been through hell for last 5 months.
I am of origin that does not fall into M.S easily( I was born in Sout East Asia and lived there until i was 18) I lived in cold areas since 18.


My symptoms started overnight woke up with numbness in my right arm and leg. Then after a week I had symtopms stack up from tingling, muscle spasm, Muscle cramps (lasts for upto 15 min) , burning sensation(more like burning from inside out), feeling like water/blood dripping on my skin(i've looked at my leg many times to make sure i am not bleeding), feeling like a centipede running on my legs all the time More to come.

Shooting pain from thingh to leg, arm to finger tips, Memory loss, Concentration loss , sensitive to cold and hot( never can find the perfect temperature), hand shaking, feeling of weightless hand & legs (loss of  strength to even lifitng a fork just to eat) and finally reflection loss in elbow, knee and ankle. Last month I started having symptoms progress on my left side.


Finally I found out I have M.S on 5/25.. My DR Said I should have been treated for M.S 10 yrs ago, also told me I will end up in wheel chair. He didn't want to show me the brain MRI  due to I could get depressed but told me there were few lesions. From the above comments what can i expect

Today(5/27) I've started my Prednisone I.V to treat my symptoms. Wish me luck.


My question is as follows.

I've had test for Vitamin deficiency(including B12), Blood cancer, Mineral deficiency, led poisoning, STD's, hutchinson's disease just to rule out.

EMG, CT, X-Ray, MRI(Neck, Pelvic & Brain  w/out & with contrast)  After Brian MRI I was told I have M.S. but the DR said I could go for spinal tap if i wanted, but he sees no reason for it, so I told him no reason for it.


1.  Any of you guys think I should go for a spinal tap?.
2. What can I expect with the treatment from now on?. (I will be on Avonex once the symptoms are treated with Prednisone)

Thanks for help.
11 Responses
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1313843 tn?1275021437
and silly me forgetting to put who the reply belongs to, since i am used to click on a post reply button. :)
Helpful - 0
1313843 tn?1275021437
Thx for the encourage. I will end up in your situation probably since i don't have my old IQ test results. Left everything when i moved around countries. :)

I'll start reading more, still reading and reading, and there is alot to read. :)
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome :-)

I think you'll be around for a long long time if your plan is to be here with us until you die, MS is no longer thought to have a shorter life span than someone with out, so dont think MS is a death sentence, because it really isnt!

I'm not dx so i'm a limbo lander (lol) i too sat with the 2% but had a cognitive assessment that showed a 30+ decline, i knew already but its not easier to swallow, when you get the proof of your cognitive decline. Just something to keep in mind, the assessors do not necessarily know how to deal with gifted, some have never assessed any one with above normal IQ, and more often than not the the people they see are showing signs of cognitive decline, their commonly seen clinentel.

Its important that the assessor knows your gifted, if you know your previously established IQ then make sure you show as well as tell the assessor. I was HG (145+), the cognitive assessment came out within the normal IQ range, which is a significant cognitive decline of 2 standard diviations or more but but but but but because i came out as normal, they cant or wont recognise that i do have significant cognitive issues.lol. I have to loose a bit more, get below normal before it seems it will make sense to them. If i sound a tad frustrated, its because I am lol.

The other thing i wanted to point out, is the connection to Autonomatic Dysfunctions and MS, we have talked about this a lot lately. Try and do some research and you may find the BP issues are because of this, maybe not but still worth the investigation.

Cheers........JJ



Helpful - 0
1313843 tn?1275021437
Thanks

I'll let my wife know about this site. I plan to visit this site til i die. As far as emotions goes, i am cold hearted :) I think it is cause of PTSD and I am trying to change. it is kind of easy to open up online.  

I was frustrated alot after visit to the spinal specialist and had BP shoot through roof(150/118 a few times) , but now i am back to normal. even the nurse that came to put the Prodnisone was shocked to see 120/80 with only 2hrs of sleep & no drugs. i didn't take any of lyrica, percocet or lexipro since it was my first treatment.
So I hope I'll be able to deal with emotions easily with my PTSD.
Helpful - 0
739070 tn?1338603402
Of course it's fine if your wife asks questions here on the forum. Knowledge is power. The more you know about the disease the more comfortable you will become in your new body. You are the same person you were before your diagnosis, it's just that you now have a name for all the symptoms you were experiencing.

The first few months are a roller coaster of emotions. You are welcome to come here and share your thoughts and vents with us as you adjust to this new dx.

Take care of yourself and be kind to yourself. It's the best thing you can do for yourself.

Ren
Helpful - 0
1313843 tn?1275021437
Hi,
I have talked about the side effects of Avonex & was already put on anti dep (Lexapro).
I have insomnia already and been through another symtom of sleeping for hours a day i've slept 18hrs twice lately.

I was on Prednisone in february and have known symptoms of insomnia.
Right now worried about teh side effect of  developing the type II diabeties since i will be on prednisone for next 34 days.

Btw, sorry about spell mistakes, it is not becasue of no knowing the language, but cause of typing words not correctly like the will be teh and to will be ot(started after all the symptoms started...

I am mostly worried about my wife being depressed than I. She went through depression already once and on Zanax & Atenolol for last 30yrs. Do you think it is ok for her to join/come here and ask questions?
Helpful - 0
572651 tn?1530999357
There is an increase in the reported cases of MS in tropical and sub-tropic zones.  they are not sure what is causing this, but MS is being reported all over the world.  The deserts of the middle east and in Africa are places we hadn't thought of for MS before recently.

I imagine the Asian population is also seeing that kind of increase, but that's just my guess.

Cognitive decline does happen with MS, but not as dramatically as you might believe.  hang in there and keep learning.  -L
Helpful - 0
572651 tn?1530999357
we must have been posting at the same time ....

Tysabri is the other drug your doctor was talking about.  It is usually only offered after a patient has failed with the other treatments and it doesn't sound like you are at that point. It has about a 1/1000 risk of developing PML, which is an incurable brain disease.  

Avonex often has the side effect of depression - be sure and mention this concern to your doctor.   - L
Helpful - 0
1313843 tn?1275021437
Hi,
Thanks for the reply and th link. Too bad I have to read about things when i can't concentrate or remember too much. :)  Hopefully my memory test will be normal, just the thought of going from 2% of world population top end to bottom of 2%.

My DR is MS speicialist (40yrs) and he was very sure about the disease before even having brain MRI, except he was puzzled by an asian having symptoms or getting it. I've been reading about M.S, parkinsons and hutchinson's disease since I started symptoms and I will be reading about those as long as i live.
Helpful - 0
572651 tn?1530999357
Welcome! You have come to the right place to learn more - we have great health pages, written by our members that can help you understand more of this disease.

you can get to them at
http://www.medhelp.org/health_pages/list?cid=36

As for the spinal tap (also known as a lumbar puncture - LP) I would skip it.  The doctor is right that it doesn't prove or disprove you have MS.  for many of us, the LP was used as extra evidence that MS was possible.  I hope that makes sense.

is your doctor an MS Specialist?  It sounds to me like he isn't because he would know that with you starting Avonex (or any of the other drugs) you are doing the best thing possible to avoid being in a wheelchair. A large percentage of people with MS  will never need a wheelchair in their entire life.  There's no way that you doctor can tell whether you will or won't be one of those people.


As for the lesions and how many you have - that really doesn't matter.  What does count is WHERE those lesions are located.  We have lots of empty real estate in our brains - we only use about 10% of what's there.  The  rest of our brain is sitting ready if we need the reserve but it isn't doing critical work.  Lesions in our brains go by that real estate adage ... location, location, location.  You can have a ton of lesions but if they aren't in the right location,  they won't do a thing to us.  

IV steroids, like prednisone, can have some strange side effects, so keep that in mind.  You may feel very hungry, extremely aggitating, unable to sleep, and gain weight.  Its all normal but be sure and ask your doctor (or even post a question here) if something doesn't seem quite right. hopefully this will help and decrease the inflammation ofyour lesions.

There is so much to learn about MS - do yourself a huge favor and only take in a little bit at a time so you aren't overwhelmed.  this is a slow moving disease so you don't have to be in a hurry to learn everything overnight.

Welcome again - I hope you will come through here often to learn more and ask your questions.  This really is a great community of caring and knowledgeable people who just happen to also have MS (or might have!).

I'm sorry that you have joined us in the ranks of having MS , but remember it could always be worse.

be well, Lulu




Helpful - 0
1313843 tn?1275021437
Few things I've forgot on the post are,  DR don't want to put me on the higher dose treatment due to a side effect of Brain infection that 1 in 1000 gets it(new so i can't rem the name of it). His reason was I beat the odds and got M.S and i might beat the odds and get the infection.

I am on percocet & Lyrica  for pain and Lexapro for anti dep.. , which helps me to function upto 60% of my pre M.S capacity.

I have COPD and added bonus of PTSD.
Helpful - 0
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