Newly Diagnosed and Clueless

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Scoobie
New Member


Date Joined Nov 2009
Total Posts : 5
   Posted 11/4/2009 11:23 AM (GMT -6)   
Hello All!
 
I was just diagnosed with MS on Friday, October 30, 2009.  After two years of unexplained medical problems I'm here.  Two years ago in August I had severe vertigo and memory loss which resulted in being hospitalized and a brain MRI ordered.  They did not find anything other than a white cluster of something or the other on my brain and chalked it up to migraine headaches which I get quite frequently.  Well two years later they are now saying the white cluster is MS.  I woke up about two months ago being numb from my chest down thinking it was a back or neck problem which those MRI's are negative, so off to the neurologist I went.  I complained of vision problems back in the Spring as if plastic wrap was over my right eye, well now all the sudden that is optic neuritis, but at the time it was a dried up tear duct.  I mean come on, this is insane.  So here I sit in limbo, 40 years old, got an email last night that my friend's mom died yesterday from her 16 year battle with MS and scared to death.  I cannot have another brain MRI because of braces on my teeth and my neurologist is nice enough to not put me through having them removed and put back on, so next week I have an LP scheduled.  He is nearly 100% certain it is MS.  I have many symptoms, a slightly high Sed Rate found in autoimmune diseases such as MS and when I bend my neck I tingle throughout my body, which for him sealed the deal.  The LP is to see if they can find anything else to get me started on injections.  So, my question is this, what injection to take.  I'm used to subcutaneous since I take heparin injections when I travel and had to get them twice a day every day when I was pregnant with my daughter.  So, should I go for copaxone?  All I know is I'm tired of being in pain and not feeling my hands which is very hard to work.  I cannot take any pain meds (allergic to most of them if not all of them) and I want as little side effects as possible on the drug I will be taking.  HELP!
 
Please excuse me as I know a lot due to working in the medical field for over 20 years

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 11/4/2009 7:46 PM (GMT -6)   
Hey Scoobie,
 
I am sorry to hear of your recent diagnosis.  The tingle ( for many it is a electric zap ) you get when you bend your head down is called L'hermittes syndrome.  It is fairly common in MS.  It can be caused by neck issues but it was a major contributor to my diagnosis as well.  It is too bad your doc is insisting on that lumbar puncture, that is not a lot of fun.  Good luck there. 
 
I have been on copaxone for three years now.  It seems to be working for me.  One thing you have to remember is that none of the MS therapies treats symptoms.  If you get the feeling back in your hand, then you did that on your own.  The current therapies out there (rebif, copaxone, avonex, betaserone) attempt to slow down the progression.  They don't actually make you feel any better.  There are other meds out there that might help.  Just get hooked up with a good neurologist, preferrably an MS specialist.
 
I am glad you are familiar with the medical world.  That will help. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 11/5/2009 10:42 AM (GMT -6)   
Thursday p.m
 
Dear Scoobie:
 
First, take a deep breath.  Then, take, another deep breath.
 
When I was dx'ed 22 years ago, I did not even know MS was.
 
First, it is not a fatal disease.  
 
And, there are now several medicines  to help.
 
While MS can make things a bit challenging....it can be handled...
 
Be sure to check with your state MS Society for much info.
 
Great Luck.   John
DX'ed June 21st, 1987
 


Donatella27
New Member


Date Joined Oct 2009
Total Posts : 12
   Posted 11/6/2009 6:47 PM (GMT -6)   
I probably wouldnt recommend the interferons (avonex and betaferon) if you're already used to and can handle the daily subcutaneous injections. I say this because the interferons have some horrible side effects, I wont give myself a shot of Avonex (yes i am a sucker on this because i only want to inject once a week) if i have anything on the next day, i'm literally a fatigued, crampy, sore mess. It gives your body the worst flu like symptoms then you get migraines because of the symptoms and you dont sleep well at all, hence i will only give it to myself when i know i have a complete day the next day to rest. my mum thinks its nuts that i'm still on it, but i only started it a month ago and i'm hoping that my body gets used to it and the harshness of the side effects fade. i'm also on Tramadol to ease the cramping and pain which seems to work, now to tackle the migraines....

mnsweetie
New Member


Date Joined Nov 2009
Total Posts : 5
   Posted 11/8/2009 6:11 PM (GMT -6)   
It's nice to get the brochure that compares the meds side-by-side. There might even be one online otherwise I bet your neurologist has the info that you can compare them. I live in one of the few buildings in the country where everyone has ms and most take copaxone. I believe it's because of the side effects and proven track record. I know only 1 here takes rebif. It's still so new and it's quite a process to take. Good luck!

Scoobie
New Member


Date Joined Nov 2009
Total Posts : 5
   Posted 11/9/2009 9:14 AM (GMT -6)   
Thank you to everyone that replied. Donatella27, I take Zolmitriptan (ZOMIG) for my migraines and it really works, it's one of the best drugs I have ever come across in my life. I am allergic to almost every med in the world and very thankful ZOMIG is not one of them. I have decided when I start my injections to go with Copaxone as it seems to be the best choice for me since I work full time and I really don't want to be sick one day out of the weekend. I am starting a business and much of my time on the weekends is devoted to getting it off the ground.

I have my spinal tap scheduled for next Weds so I guess after that I will know more about where to go from here.

Chic
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/9/2009 5:28 PM (GMT -6)   
Hello
I am new to this board but I wanted to jump in and tell you I was officially diagnosed in 1981.
 

Back then...lol... a spinal tap was customary for a diagnosis. I am telling you this to ease any anxiety you may be having regard next week.
It didn't hurt a bit!
I think you'll do fine yeah !!

Today,being diagnosed with MS offers so many options to keep MS from progressing cool . Talk to your doctor.

You are doing the right thing by coming to this board to ask questions and get general feedback!

Chic

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