Diagnosed 10/31/08. Have a few questions...

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Angelagc
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/3/2009 8:57 AM (GMT -6)   
Hi all, I'm 26 and I was diagnosed with MS after a 2nd opinion on October 31st, 2008 - I was having numbness in both my right arm & leg simultaneously for 3 months and my MRI showed at least 30 lesions on my brain and a small one on my spine. Since I was pregnant I couldn't start treatment. In April I got into a study and unfortunately got into the existing treatment group (Rebif), I was only on it for less then a month when my blood tests showed problems with my liver so I was taken off of it.

Had my appointment yesterday to go over new treatment plans. 2 of which were chemotherapy drugs + copaxone or Tysabri. My doctor strongly suggested Tysabri for 12 months and maybe 15 months if all goes well. He showed me the MRI I recently got with contrast and it showed nothing...do they have a certain setting on MRI's that only show new lesions & mask the existing ones?

My husband is second guessing my diagnosis since I have twice as many lesions as the average ms patient (per my doctor) and I show no signs or symptoms but tingling hands now and then. My doctor said that without the MRI he would never have guessed I had MS... could it be something else?

Any advice or answers?

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 6/3/2009 1:56 PM (GMT -6)   
Angel,
Welcome to the site. There are a lot of good people here that will help you as much as they can.  You say that you had at least 30 lesions on your brain when you had the MRI? That's about what I had also. My Neuro showed me my MRI and pointed them out to me. He first diagnosed me with Relapsing/Remitting MS but after 7 months re-diagnosed me with having Primary Progressive MS and told me that I have had this condition for some time.  If you have had 2 opinions and both of them came up with the same result then I wouldn't mess around with not believing them as MS is nothing to mess around with.  However, since you are only 26 years young your doctors may have caught this at an early stage and just maybe able to give you a treatment that will control it for you. One thing to remember is that ifit was caught in the early stages then it's not the end of the world and you should be able to lead a long and happy life for years to come. God Bless You and your family and I pray that everything will be all right for you. Take care my new friend and do what the doctor recommends you should do. Rememeber, any treatment that is prescribed by your doctor is better than no treatment at all.
Chuck
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Just recently had Treatments of Cytoxin
                                        Liked to kicked my butt!


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 6/3/2009 4:48 PM (GMT -6)   
I am way confused.  The doctor showed you a new MRI that was clear?  How can he justify his MS diagnosis?  I can't explain this and as far as I know there are no settings.  When I have an MRI, we compare the old MRI with the new one to determine which lesions are new and which lesions are old. 
 
You need to specifially ask for clarification on that point.  Especially with how agressive your doctor is being with treatment.  I am assuming your doctor is talking about cytoxan or novantrone short term and then going with either copaxone or tysabri long term.  By the way, both of these treatments are extremely effective. 
 
So, I suppose my advice is to ask to have that MRI explained.  If that seems reasonable then I would go ahead with treatment.  The choice is yours however.  There are many that choose to treat with exercise, diet and supplements.  There is no right or wrong way to treat MS.  There is only what you choose. 
 
MS is extremely variable and there is just no way to predict an outcome for any of us.  I do want to warmly welcome you to HW.  I hope you post often and let us get to know you. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Meche
Regular Member


Date Joined Nov 2008
Total Posts : 41
   Posted 6/11/2009 2:47 PM (GMT -6)   

Hey Angel,

Welcome smilewinkgrin

I was diagnosed with MS in 2008 and I was 26 just turning 27.  Like you I had the numbness which started in my face and neck then went on to my whole body.  Before I started the meds my consultant showed me my MRI scan and sometimes I think medical professionals forget that we cant always understand these things.  When I saw my MRI scan I couldnt see anything on it, except a "shadow" patch on my brain (at that time i was just glad a brain showed up LOL), but on my spine was a small Lesion which I couldnt see, thankfully my mum was with me and she asked him to explain a bit more for me, which he did and I understood it a bit better.

I think not knowing and understanding is the worst part and I agree with Gretchen i think you should ask your doc to give you a better understanding and hopefully it will help you out.  I have been on Rebif for over a year now and so far it has been good for me, although my MS nurse did explain to me that not all meds would work just trial and error.

I have found that my diet effects how I feel also, like if I have spicy food I feel unwell and get tingling in my hands so again its trial and error with that too.  I am still learning about my ilness and like chuck said there is alot of great people here who help as much as they can. Keep your chin up!!!

I hope you get the answers you need right now soon

xx

 


Meche xx


Angelagc
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/22/2009 11:56 AM (GMT -6)   
Thank you all for the warm welcome - I just remembered I had posted on here weeks ago and came back to research Tysabri a bit more before I take the plunge - I am having HUGE anxiety about the 1/3000 chance of getting Leukemia.

I have never been in denial - I think my husband was having wishful thinking, I knew well before I was diagnosed and jokingly told my husband that I had MS and turns out I really did.

As far as the MRI goes...I think it was the MRI I had with contrast that showed I didn't have any active lesions being new to this and not knowing got me confused, I have had 4 MRI's since last July. My doctor is very thorough and explains everything to where I understand it, I tend to forget what I just heard quite often that's why my husband has to tag along to each appointment.

Everyone keeps stressing to me that diet & exercise are very important. Exercising is no problem, it's the diet that's getting me. I am very picky and while I'm 5'8" and look very fit on the outside, my insides are a whole other story. I'm researching detoxifying my body before my first Tysabri infusion should I choose to go on that next month.

clb2009
New Member


Date Joined Jun 2009
Total Posts : 6
   Posted 6/29/2009 6:28 PM (GMT -6)   
Hello Angelagc,

It sounds like you trust your doctor, but if you don't, my advice is to switch as soon as possible. My first doctor that I was referred to flat out told me that I was lying. He even called the physician that referred me, and if it wasn't for him forcing this doctor to do an MRI, I wouldn't have gotten one. I was diagnosed in March 2003. I initially had 7 lesions, and the doctor actually appologized to me because he thought I was lying. I had been under tremendous stress due to a priest and I think that sent me over the edge. This doctor also told me that diet and exercise don't matter, and that there was nothing to do. Well, I got steroid infusion for my 1st bout, but when it happened again, I switched doctors. The doctor I left is even a big shot and teaches at the Mayo Clinic I was informed, well, he sure didn't know much for a teacher. I have even more horror stories, but the bottom line is get a doctor you trust. My doctor now is from India, and I just love him. He put me on Copaxone and Gabapentin for my numb and tingling feet. Trust your gut, that's my advice to you, and best wishes!!.
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