Hi DX last week W/MS

[psychedout]

Hi,

62 yo male just DX what a shock not sure what type of MS I have and not sure what mediction I should take any input will be greatly appreciated.

Thanks,

Hugh

[Leola Stotts]

WELCOME TO THIS SITE. THERE ARE A FEW MEDICATIONS AND YOU REALLY NEED TO RESEARCH AND FIND OUT WHICH WOULD WORK BEST FOR YOU. LOTS OF INFORMATION OUT THERE ON JUST ABOUT ANYTHING ON THE INTERNET.

IT CAN BE OVERWHELMING IN THE BEGINNING. YOU WILL BEGIN TO GRASP THE DISEASE AND WHAT TO EXPECT. READ A LOT. TAKE NOTES OF WHAT IS GOING ON WITH YOU. HOW YOU FEEL ? WHAT MAKES IT WORSE? WHAT HELPS? WHAT TIMES OF DAY YOU FEEL BEST? THAT KIND OF INFORMATION WILL ASSIST YOU IN KNOWING WHEN TO PLAN IMPORTANT EVENTS OR THINGS THAT YOU MUST GET DONE.

MS IS DIFFERENT FOR EACH PERSON AND REACTS DIFFERENTLY EVEN WITH EACH DAY. LEARN TO READ YOUR BODY. REST, HYDRATE AND EAT RIGHT. EXERCISE IS CRUCIAL TO KEEPING YOURSELF MOBILE AND LIMBER.

GOOD LUCK WITH TREATMENT. YOU WILL GET SUPPORT IF YOU KEEP COMING BACK HERE.

[psychedout]

WELCOME TO THIS SITE. THERE ARE A FEW MEDICATIONS AND YOU REALLY NEED TO RESEARCH AND FIND OUT WHICH WOULD WORK BEST FOR YOU. LOTS OF INFORMATION OUT THERE ON JUST ABOUT ANYTHING ON THE INTERNET.

IT CAN BE OVERWHELMING IN THE BEGINNING. YOU WILL BEGIN TO GRASP THE DISEASE AND WHAT TO EXPECT. READ A LOT. TAKE NOTES OF WHAT IS GOING ON WITH YOU. HOW YOU FEEL ? WHAT MAKES IT WORSE? WHAT HELPS? WHAT TIMES OF DAY YOU FEEL BEST? THAT KIND OF INFORMATION WILL ASSIST YOU IN KNOWING WHEN TO PLAN IMPORTANT EVENTS OR THINGS THAT YOU MUST GET DONE.

MS IS DIFFERENT FOR EACH PERSON AND REACTS DIFFERENTLY EVEN WITH EACH DAY. LEARN TO READ YOUR BODY. REST, HYDRATE AND EAT RIGHT. EXERCISE IS CRUCIAL TO KEEPING YOURSELF MOBILE AND LIMBER.

GOOD LUCK WITH TREATMENT. YOU WILL GET SUPPORT IF YOU KEEP COMING BACK HERE.

Thnaks for the support and I am sorry for the double post. I have been reading a lot some of the information on the meds scared the heck out of me so I really need feed back on people who have been on them and or currently talking one of them. I feel lucky this hit me one day before my wife and I went on a cruise I woke up with my left leg and waist line numb.

We went on the cruise and had a good time. I did not know that years before my balance problems was MS and neither did all the Doctors I saw to find out what was causing my vistibular problem was.

I just found out that a Brain MRI I had in 2003 showed some small black spots but noe one told me and obviously no one thought it was MS.

Again Thanks,

Hugh

[fina66]

hugh is new...

hugh,
I am so sorry for your dx. I was dx last year. Truth is we didn't just get it, we probably have had it for a while. Going through my family medical history we came to the conclusion that I have had it for about 6 years. Back then I had trouble with my feet numbing alot but it would go away within 3 days. I even saw a chiropractor thinking it was back problems since I worked an extremely strenous job.
I woke up one morning and my feet were numb. I let it go thinking ok I felt this a while ago and it went away. 3 days went by and it only got more intense. Then the numbness moved up rapidly until I was numb from the waist down.

you can just imagine the rest. I am certain you are living it. The uncertainty and the disbelief in addition to living in the world of the unknown.

My nuerologist decided what would be best for me. She put me on disease modifying drugs. I take Rebif injections 3x a week. prefilled syringes 44mcg. in hopes of slowing down the progression of the disease.
since it has been a year that I have been on Rebif I had my 6 month MRI. Great results they say! there have been no changes since last MRI. so I guess that's what the good news is. No new lesions. I have a few on spine and brain. But no new ones. you have to look at the bright side of things otherwise MS will eat you alive. literally!!!
Try and stay as positive as possible. Knowledge is power! Learn as much as you can. And please visit this site often you will be glad you did. You will meet the most wonderful people. I wish I would have done it sooner because I spent atleast 6 months after dx just being angry and bitter.
I turned to my church and the power of prayer is also an extraordinary medicine. Good Luck and hope to hear from you soon. God Bless!

[KoKo]

Hello Hugh

Welcome!

I think I responded to another post of yours

In any case, we're glad to meet you!

Hopefully you will benefit from the information, support, and interesting topics here at MS World!

Here is a link to information on the various disease modifying drugs from the National MS Society:

http://www.nationalmssociety.org/sea...m=20&x=18&y=15

There is a Medications forum here, too, if you have questions for the members about the medications they are taking.

Looking forward to seeing you around!

Take care,
KoKo

[psychedout]

fina66 and KOKO

Thanks for the reply. My Neuro told me I have had this for over a decade and I agree that there were signs of MS back then but they were so slight and not that often that none of us ever suspected it.

So now I have to move on I still work and have no problems getting around. I am on 900 to 1200 mg of neurontin daily and I see My Neuro Doc on the 29th he wants to put me on the new pill, my insurance company does not have it listed yet so I have no idea what my copay will be.

I have to stay well we are going on another cruise in Feb.

Thanks again,

Hugh

[Jules A]

Hi and welcome,
Check out the medication section here and you will find more posts about the different medications and can ask specific questions if you want.

Everyone has different experiences. Mine is that I had two flares, eye issues, in the six months before starting Copaxone and have had 0 in the nearly six years since. I have had some progression of symptoms like paresthesia and bowel/bladder stuff but am able to work full time while also going to graduate school full time so I really can't complain for now.

The good news is I am doing well so far, the bad news is that this could be the medication, the natural progression of my disease or a combination. In any event unless things dramatically change I'm sticking with the med.

Good luck to you.

[psychedout]

Hi and welcome,
Check out the medication section here and you will find more posts about the different medications and can ask specific questions if you want.

Everyone has different experiences. Mine is that I had two flares, eye issues, in the six months before starting Copaxone and have had 0 in the nearly six years since. I have had some progression of symptoms like paresthesia and bowel/bladder stuff but am able to work full time while also going to graduate school full time so I really can't complain for now.

The good news is I am doing well so far, the bad news is that this could be the medication, the natural progression of my disease or a combination. In any event unless things dramatically change I'm sticking with the med.

Good luck to you.

Thanks I did check ou the med. section and that scared me. i found out today the New Pill that just vame out that my Neuro wants to put me on is not even in our insurance formulary yet and they have no idea when and if it will be. Well I do not have an extra 4000.00 a month to buy the pills, so............I am not sure what I am going to take. Right now I do not feel bad but I doubt that will last for long but I still have the "MS Hug" almost 2 months now.

Hugh

[Mike_ccsvi]

Hugh,

I've heard of an operation that could work out for you if you're not comfortable with all the med options out there. Don't quote me on this but I believe it's the liberation treatment? It's quite the buzz on a different MS patient site I was introduced to. I think it was ccsvi locator or something to that effect, fyi.

Marvin

[psychedout]

Hugh,

I've heard of an operation that could work out for you if you're not comfortable with all the med options out there. Don't quote me on this but I believe it's the liberation treatment? It's quite the buzz on a different MS patient site I was introduced to. I think it was ccsvi locator or something to that effect, fyi.

Marvin

Thanks Marvin I have been reading about that. Do you know anyone that has done it?

Hugh

[twisterred]

Thanks Marvin I have been reading about that (Liberation Treatment). Do you know anyone that has done it?

Hugh

There is a woman on YouTube named Andrea who has a video blog (vlog).
It's been about a month and at first, she was feeling great.

Now she posted that she isn't feeling as well, but still better than before the surgery.
http://www.youtube.com/user/MSVlogSupport

Hugh,

I'm so sorry to read of your diagnosis.

If there are any meds that aren't covered by insurance, look into Patient Assistance Programs. The drug companies themselves set them up, so whichever you choose, remember you can contact them and they will help.

In regards to your MS hug, has your doc prescribed anything for it?
Don't feel like you have to accept what's happening all the time.
See a neurologist (great if you find an MS specialist) who can offer a plan for you.*

*Just wondering, did you get a second opinion regarding the MS diagnosis? Insurance should cover it because it helps confirm the diagnosis while eliminating costly mistakes. A good DR. won't mind having their diagnosis questioned.

[andi b]

60 y/o woman just diagnosed

Had breast cancer 10 years ago and thought that was my cross to bear... not so...Mind started with optic neuritis, diagnosed by an ophthalmologist who said that he didn't think it would be MS... but possibly a brain tumor from the previous BC. Turned out to be MS after all and I wasn't really surprised (my sister and 2 cousins have MS).

I started on Avonex about 7 weeks ago and seem to be doing fine. The side effects are kind of crummy when they happen, but they haven't happened each week. I think premedication is the key to not having side effects. I like that it is only once a week, not so much that it is IM (although that apparently keeps you from having the bumps and skin problems from the subq ones). My husband is a nurse and he gives me the shot each Saturday.

Good luck on whatever you choose.

Andi