Newly Diagnosed

Hi Everyone,

I was diagnosed with ms about 3 weeks ago.  I started having issues in December at first my eye lids would not open. I was diagnosed with Myasthenia Gravis and given meds and sent on my way. I never responded to the meds and after about 4 weeks my eyes finally did open on their own.  Then i noticed that my left eye looked strange and my vision was terrible.  I was also constantly tired, dizzy and unable to concentrate.  At this point i had a MRI and LP (spinal tap) and was diagnosed with ms.  I've been having some other strange sensations as well like ms hug and numbness in my right hand/arm.
The Nuero wants me to start medication but I feel like this has all happened so fast and very little guidance  was given on the meds i was basically told to pick one  ???
My GP has referred me to another nuero that i hope will be more helpful...

Neita

[Sparkysarah]

Hi and welcome to the forum.  It sounds as if you have been through things rather fast and just need a bit of time to get used to your diagnosis. You may find it helpful to have a look at the health pages on the top right hand side of this page to give you an idea about the differences between the interferon treatments and potential side effects.  I think you need to discuss this with your neuro who needs to outline what is available to you but it is often down ot personal choice.

I am sorry that you have been diagnosed with MS but am glad for you that you have not had to wait too long as some people stay in limboland for a long time. The sooner you get on some treatment the better..but having said that you do need time to come to terms with everything and to read up and understand the implications of everything that is available to you.

Feel free to ask any questions that come to mind as there will always be someone who is able to help.

Best wishes

Sarah

[jensequitur]

My neurologist told me to pick one, too - I would have liked a little more guidance, but really the relapse rate is the same for all four of the CRAB drugs.  (Copaxone, Rebif, Avonex, and Betaseron.)  I started on Copaxone, because it didn't have a flu-like reaction, but had to switch to Betaseron after two and a half years because of side effects.  Betaseron requires a blood test every six months to make sure your liver is working.

If I had to switch again, I would ask for Gilenya - the relapse rate is much reduced (I think 50%) and progression is much slower.  The only problem with that is the slowed heart rate upon first administration.

[Lulu54]

Hi Neita,  Welcome to our safe little corner of the web- there are lots of people here who are willing to help and answer your questions.

Almost all neuros give their patient the choice of which drug to take  - it can be confusing to figure out.  There is a tool online that I refer people to often- it walks you thorugh the injectible drug choices and helps you analyze which one is best for you.  you can find it at:

http://www.msdecisions.org.uk

welcome again, Lulu

[Ojibajo]

Welcome to the forum. I was also given a stack of information about MS DMDs and was told to choose one.

[JSSL]

Hi There - I was not given any direction as far as meds go either...but I chose Copaxone simply because I do not have to worry about the possible side effects on the liver. But then again I do not mind needles every day (I have a type 1 diabetic brother)...certainly an individual choice.

Good Luck :)

JSSL

[Neita]

Thanks for the link, I'll give it a try.

thanks again...

[Neita]

thanks everyone for responding it's very nice to hear from other people who have gone through making the same decision.

[Lulu54]

Neita,
Just remember that there is no wrong decision in chosing a drug - this is the pepsi/coke challenge.  They are all the same, just with different flavors.  

good luck and feel free to ask all the questions you want........ Lulu

[crwriter]

I sorta like this link that Lulu put up for me.  

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Information-and-Resources-Index/show/22?cid=36

I think I'm going to try to find me an MS doctor when I know for sure.  I am just in the diagnosis process after being pretty much ignored for 10 years.  Here's hoping things go well for you.