WOW - A DIAGNOSIS

[JENNIEO]

My neuro appt today went well.  I really liked the doctor and he was very informative and straightforward.  He looked at my MRI film and said I definitely have MS - the pattern and number of lesions made it obvious to him.  After listening intently to my sx, he stuck with the diagnosis.  I have two kits (copaxone and Rebif) to review and then go back the beginning of October to meet and get started on some treatment.  I have neurontin and provigil in the meantime to help with nerve pain and fatigue.

Wish me luck! and let me know if you have info about Copaxone or Rebif that can help educate me more than the kits!

Jen

[Fluffysmom]

I was sitting here doing my paperwork for my upcoming visit with an MS Specialist; my third neurologist.  I have lots of lesions in my brain and lots of symptoms that some might consider mild.  They mess with my world.

I don't want to have MS, but I do want a diagnosis.  I've only been in limboland since February, but had lots of unexplained symptoms before that.  These 6 months have felt like a very long time.

I am so happy that you didn't have to spend an endless time in limboland!  Although no one WANTS ms, we do want to know what we have so we can fight it as best we can.

So, congratulations on your bad news.  :o)  I will be eager to hear what choice you make for medication, how it works, what the side effects are, and how the battle goes!

Tons of Hugs,

Kathy

[AmishErin]

The first doctor who read my MRI report and told me straight that I had MS also told me that I was lucky to get a diagnosis and that some patients wait years to find out what they have.  Knowing that you have MS does not feel lucky, but after I found this sight with all of these unknowing souls I do feel blessed with knowledge.  

Knowing is half of the battle

Hugs Erin

[JENNIEO]

Thanks - yeah, I know it rots to have to deal with this - but I feel much better now knowing WHAT I'm dealing with.  I have to say that I would have been quite distressed if he had said he wasn't sure, or more tests - and every time I read a post about how long some folks have been in limboland and suffering, my heart just breaks.  I feel badly that everyone cannot get their answers this quickly.  It has been only 6 months since I fainted (which I totally ignored), and only 3 months since my first appt with a rheumatologist for my arm pain that got the ball rolling.... Thank you for your support, prayers and especially hug.  I know I have a long road ahead of me with many bumps and I expect I will be making full use of this forum for quite a while!  I have already determined that I will NOT be waiting til Oct for the treatment, and hope to do tons of studying on the meds over the weekend and call for a new appt on Monday.  


onward and upward!
-Jennie

[Momzilla]

Hi, Jennie!

I just wanted to say that I'm sorry for your diagnosis.  I truly am.  It just *****.  No getting around it.  

I am glad that you have a doctor who diagnosed you quickly and is offering you medication to halt the progression of the disease.  Wonderful!   Good for you!  

I know you have decisions to make, and you got lots of good info from everyone here.  I love this place!  I wish I could offer more in the way of info for you, but I really don't have experience with the medication.  Just get on some as soon as you can!  I do offer support and prayers and a big long hug.

Peace,

Zilla*

[Lulu54]

Jen and all,
I was just understanding how complicated MS is and then bam! this whole medication thing just gives me one more thing to roll around in my already addled brain.  :-)  It dumbfounds me that we are given a choice - I just want someone to know whats best for me and pick it!

Good luck with coming to the right decision.
Laura

[JENNIEO]

Wow - this forum is so great and I am so glad to get responses with such valuable information.  I understand both waiting (to get a handle on the symptoms - mine ARE still evolving, with a new buzz in my face even since yesterday) and hurrying up which would be my gut reaction.  I am not su re what I will do yet, but the new symptoms actually make me want to hurry, and hopefullly I will know what new stuff is med caused vs MS caused.... I am having a VEP at the end of August, so maybe it would make sense to wait until after that?  Would the med choices change if the disease shows up in my Optic Nerve?  I may just call the neuro after reading the kits and ask about that - if it won't matter then I do think I'll just ask to be seen sooner and 'get this party started'.

[sllowe]

Hi Jen,

Know you must be exhausted.  But I'm glad you will begin this next phase.  The choice is a tough one, but the literature helps.  We have a couple good threads where we discuss the differences, and experiences.  When you are read to read, hollar to me, and I'll find them and bump them up.  No sense in doing it now - best to do it when your ready to absorb.

My only suggestion which is a little opposite of some is that since the Dr gave you til Oct, you may want to keep to that.  Reason being is that my experience it that I really was so new to my symptoms that it was very difficult for me to know what was causing what because I started meds so quickly.  

For those who have been struggling for so long, and have their symptoms under their belt, and know them well, I would say - start right away, you'll know what the meds are causing.  But, if your symptoms are new and frequently changing recently, waiting til Oct. may be a good thing - just my thoughts.

Wishing you peace w/your thoughts and decisions.  Take your time.

-Shelly

[cjacks]

Hi Jen

Like you said , you knew in your heart what it was..  and you didn't have to linger in limbo ..  that's a very good thing .  Limbo Land is not  a great place to live.     Sooo , congratulations on the speedy dx.  

I was dx.d a month ago.  It hasn't really sunk in yet.  It just still feels like I'm 'sick' . I guess that part will take awhile.  

I chose the Copaxone. All three of my M.D.s liked it . And as I had taken interferon for another illness eight years ago and felt like cr@p on it , I didnt want to feel any worse than I do .   The injections are every day , but not bad .  No side effects , other than injection sight reaction ..  and that's not to much.    You could try warm packs before the injection and definitely ice packs after.    Its easy peasy..  :)

Copaxone is a four chain amino acid and works by tricking the immune system into attacking the drug instead of our bodies...  cool  !      I don't know how Rebif works .

I would call the neuro and tell him your decision and  you don't want to wait until OCTOBER !!  ???  to start meds...   M.S. is always active  and the meds are suppose to slow things down..   so the sooner the better..  When I got dx.d I got my  dmd  rx. the same day .  Most drug companies have nurses who will come to your house to teach you how to use there product  and support centers.  Very helpful

Good luck     Hugs and prayers

Stick around ,  there is still lots to learn.

Jo

[Deb61]

Well, I'm glad to hear you have answers.  For me and probably you too, it was actually a relief to get some answers.  Now you can move on with your life and get treatment.  I also chose Copaxone.  

My sister chose Rebif (she's no longer taking it), and she did have some flu-like side effects for a few months to start out.  Later on, those side effects gradually disappeared.  However, I chose Copaxone because I read something in the literature (really, really fine print) that if you have thyroid problems, to consult your physician before using the medication.  So I became a little bit unkeen on the idea that this was the best medicine for me, so I chose Copaxone.  Yes, you do have to inject it every day, but it has become part of my daily routine and I'm getting used to it.  

Best wishes, Jennio.  It sounds like you're taking the news in stride.
Deb

[Amyloo]

Hi Jennio,

I was just diagnosed last Dec., and given the same choice of meds as you were.  For me it was an easy decision as to which to try:  I opted for Copaxone because the risk of the three big side effects (depression, flu like symptoms and fatigue) were just about zero, but they may present with Rebif.  But that is me; I also don't mind the every day injection thing.  One thing I would advise you of though; if you can make your decision and get on your med sooner than October, I would.  It takes about four months for Copaxone to actually start doing it's job; so the sooner the better.  God bless you, Amy

[JENNIEO]

Dx definitely feels good - even though MS is DEFINITELY not what I ever wanted to have - once you have the symptoms and know in your heart of hearts what it is , then a dx is better than not (as I know so many of you know too well out here in this forum).  I feel awful that so many are in limboland - it just doesn't seem possible with everything that's available today that more dx's aren't made quicker.

Yes, a choice of treatments was definitely offered - there were several mentioned but the two kits (not drugs, but information about them, nicely packaged for marketing purposes...) that I brought home were the ones that he recommended the most.  I told him that since I work at home, side effects are not a huge concern for me as long as the drugs do their dirty-work and help me stop this progression.  That's when he picked Rebif and Copaxone.  We'll see!  I'm too tired tonite to read any more, and behind in my work from today's appt so I probably won't dive into it until tomorrow after work.

Peace  -

Jen

[JENNIEO]

yeah, not the best news in the world for sure, but I'm an extremely impatient person and somehow I wasn't tortured by waiting long for the dx - praise God!  I will definitely stay in touch and share whatever I learn - Once I get my bearings I am sure I'll have a lot to say (take it or leave it).

Thanks for the hugs,

Jen

[Rena705]

I am very happy for you that you have found a doctor that is firm in his diagnosis and is going to get you started shortly on the DMD's.  I am sorry that you have been diagnosed with MS but by the sound of it you have someone that is going to look after you well and for that you are very fortunate.  Please stay in touch with us and let us know how you are making out ok?  Now that you are diagnosed you may have something to offer other members to help them out and not only do we appreciate the assistance, it can be very fulfilling for you as well.

Lots of Hugs,

Rena

[Lulu54]

Jen,
Although having MS is not what you wanted, I am sure it feels good to have a diagnosis.  I 'm wwaiting to see the neuro as well and I think it will also be an easy, quick dx.

I'm surprised you have a choice in drugs - I wouldn't know what to begin to think if they hand me some and say make a choice! I'll be reading any replies you gt here.

Good luck,
Laura