Have you had any other testing done? I went through the testing circuits for about 4 years before I got a diagnosis (in April). My first MRI 4 yrs ago only had 2 lesions, so it was dismissed as MS. My recent MRI (4 yrs later) had 5 lesions, which still isn't considered a lot. I got a spinal tap which confirmed the MS (unfortunately). I was put on Rebif also, and do inject myself 3 times a week. If you want more of a confirmation before starting the meds, then yes, go get a 2nd or 3rd opinion until you are satisfied! That's YOUR right as a patient!

Good luck to you!

No lesions on spine as of moment. No symptoms other than occasional numbness to index finger and burning face. No, I have not had any other testing. I feel fine at moment, I just worry if I don't do anything. Thanks

I've don't very many lesions, but my dx was also confirmed by an examination of a neurologist and I am confident of the dx.

If you have any doubts, then don't do it until you feel right about it.

I am on Rebif.

It's a pretty big decision...hopefully the largest you will ever make. So if you can get a 2nd,3rd opinion, YES go for it.
Vanderbilt was the 2nd opinion, but they fell through the cracks. Do you have an idea of what MS clinic you would like to go to?
Ms is not an Acute illness, it's a chronic illness. So there is time to get a decision you feel comfortable with.

Lynn what do you mean by fell through the cracks at Vandevilt? I just was not impressed at all with Vandervilt, I found a clinic in Franklin,TN, I thought I might try them.

I'm going to echo debfox's question: Have you had any other testing done? To my knowledge, the MRI is just one piece of the puzzle regarding diagnosis. Most of us who have been diagnosed have gone through evoked potentials, lumbar punctures, thorough neurological clinical exams, etc. I'd personally want to be pretty sure that the MS diagnosis was correct before starting meds. They're very expensive. I know how you feel about wanting to start on something--I felt exactly the same way right after diagnosis. I felt like every day that passed w/o medication was a day lost. I know better now, but I sure understand your desire to take meds. to control the disease. I wish you much luck, my dear!

I had the lumber which came back negative lesions but doctor said something about bands without explaining what that meant.

This is how I got my dx:
1. Saw my GP one Friday @ 6:30 p.m.
2. Was sent to ER to see neuro who would meet me there.
3. A CT was done to rule out a stroke.
4. Neuro said he was 99% sure it was MS. Per his request I came back Monday to be admitted for MRI to confirm dx, and for IV solumed. Don't have many lesions on my MRI, which I was told by neuro was good for me. A spinal tap was also done.
5. Started Betaseron shortly after. I left the hospital.

Even before MRI, just by my symptoms, my GP and neuro thought it was MS. It was done just to confirm the dx.

I really believe that the sooner you start the meds, the more they are able to help you. If you feel you'd be more comfortable with another neuro office, that, in fact, may be a better choice for you. It doesn't have to be a MS clinic, just a good neuro. Whatever you make the choice to do, don't put it off for long. One of the few things we can do to help ourselves is to begin one of the approved treatments.

Good luck friend! Whatever is going on, if I were you, I'd do my best to get to the bottom of it.

Sending good thoughts your way! Keep us posted.

I think no matter what your diagnosis turns out to be, and it will probably be MS, it is a good idea to start on meds that would help. If Rebif is recommended, then I think they feel it's pretty serious.

I was upgraded to REBIF when I began to have more relapses.

Second opinions are always a good thing and doctors always recommend or favor them.

Remember it is your body.... you know how you feel.... follow up on that... and communicate every bit of it. These docs are here for us and at our disposal. Communicate with them. Best of luck to you.

Also, its not all about testing... it's also about what you report, what the symptoms are. THis is all much more important than we ever give credit for.

Be yourself, communicate and be happy with it. God Bless.

Has your local doc asked Vandervilt why they havn't responded??? It could be that the right people didn't get your MRI.

I just ran into that problem with test results not getting sent to the right people at our large teaching hospital here in my state. It was very frustrating. It took from April to June to find out the first set of tests were not done completely and had to be done over, then the last blood tests I had done only 1/2 the results were sent to only one of my doc's not all of them. I had to go to the hospital and request a copy of my lab results and fax them to my doctors myself!

Get a new doctor if you don't feel that the one you have is proactive in your treatment! I wouldn't be happy with my doc if he left it hang that long without looking into why they hadn't responded. Call Vandervilt's MS Clinic yourself and ask why there hasn't been any reply. If I've learned anything in the last 12 years since my dx it's that if I want good care I've got to stay informed.

1. Learn all you can about MS and it's treatments. The more you know about MS the easier it is to understand what your doctors are trying to tell you.
2. Keep going to support groups and asking as many questions as you can
3. If you don't understand what your doctor is trying to tell you ask them to explain it again or in a different way until you do understand.
4. Get info from NMSS or MSAA or any of the other groups/web sites out there that explain all about MS and share it with your family. NMSS has lots of different booklets/pamphlets they will send you or you can print off the web.

Sometimes people need time to sit and read about something as complex as MS is to absorb everything. Tell them that after they've had time to read the material to feel free to ask you questions and if you don't know the answer you'll find out the answer for them.

5. Try and get your family and support people to go with you to support group meetings or to attend and join a care-givers support group so they can learn as much as they can on both the disease and on how they can help you and themselves deal with it.

My prayers are with you

Opps one of the things I forgot to add....

I think that one of the hardest things to overcome with MS is that people can't "see" your illness. Most of the time we look "normal" but we still feel and deal with the symptoms.

I had that problem with my GP before my dx. If he couldn't see it I didn't have it. But to be fair, I think he did feel bad when they dx my MS (he had just kept saying "its all in your head...or it's all from stress")

Family on the other hand, I still have some who don't want to deal with the problems surrounding my problems. Can't force them to .... but I'm not going to let their negativity influence my journey.

Well I do not exhibit any symptoms other than occassional face burn that is it, I know I am lucky.

As many have stated in the previous threads, the most important thing is for you to be 100% comfortable with whatever decision you make. In my wife's case it took 5 years 17 MRI's, 3 spinal taps,agiogram, tilt table test, doppler scans, CT scan xrays, blood work EKG, EEG, blood work every 3 months and couontless other test. Leslie was very different because her MRI's came back negative, the spinal tap did not have the protien usaully found in MS patients. We have 7 specialist and a primary doctor. Keep in mind that Doctors don't know everything as much as they would like to believe their own PR. They are human and they to can make mistakes. The best way to combat this is to be informed abouot the condition to the best of your ability. The more you know the better you will be able to make a decision. Regardless of what state you are in the doctor by law must explain to you in basic terms exactly what the condition is and what their recommended plan of treatment is. Not all treatment will work for all individuals. There are many factors involved when chosing a drug treatment. your body chemistry may not work with the drug that is being recommended. The drug could have a negative effect on any other medication that you are taking. You also want to look a the trail data of the drug that is being receommeded. How long has it been on the market? How successful has this been with MS patients?
What are all of the side effects. The way that Leslie and I have approched this has been, we don't expect anyone to have the magic bullet, what we do expect is complete honesty. IF a doctor cannot do that then they are fired. Do not get me wrong we are not looking for someone to tickle our ears and tell us what we want to hear, what we want is the honest truth so that we can make the best possible decision with all of the information that we have. There are site's that you can go to in order to see the clincal trail data so you can get an idea of what is going on.
As far as support from family, ever heard of the term feast or famine, it can be just that.Each person has to come to terms with the condition within themselves. The problem is that the people that have the most problem with it are those that have no clue as to what the condition is yet they are quick to make judgements of others.
You must do was is right for you, do what will give you the most confidence so that you can empower yourself live life to the fullest. Hey you may have a condition that has slowed you down but I didn't hear the fat lady sing. if your doctor is not straight with you and you don't get that warm fuzzy feelings- fire them and get a doctor that will not be afraid to say." I don;t know, but let me see what I can find out
In summation: get info, get info, get info

HI HAS YOUR DR. DONE A SPINAL TAP IF NOT I WOULD INSISTON THAT AND ASK HIM OR HER IF YOU HAVE THE THREE MARKERS IN YOUR S/T. WHEN I HAD MY MRI DONE THE ITTLE SPOTS WERE IN THE AREA OF THE BRAIN WHERE MIGRAINS SHOULD BE. msIS A FUNNY CREACHER IT CAN HIDE FOR A LONG TIME OR JUST POP UP OUT OF THE BLUE. BEFORE YOU GO ON ANY MS SHOTS MAKE SURE YOU HAVE HAD A SPINAL TAP. MICHAELLE

I had a CT to rule out a stroke, then went for MRI. There was ONE lesion on my MRI. My neuro was confident it was MS. She offered other tests, including spinal tap. I thought the diagnosis was obvious. I declined other tests. I felt that the diagnosis was solid, and I really trust my doctor. I didn't feel that I needed to endure more torture and cost to tell me what I already knew.

Someone earlier mentioned that Rebif is for more serious cases. I don't think that's the case, as my neuro said I could choose. All the CRAB's, with the exception of Copaxone, work in a similar manner. I chose Rebif because of the shorter needle, three times a week dosing, and good efficacy in suppressing new flare ups. The sooner you get on meds, the better. You have a right to choose your treatment path. If you are unsure, by all means, get a second opinion. Just remind yourself that denial is actually a stage of the grieving process.The longer you wait, the more damage might be done. I really like Rebif, but at the end of the day, it's your body and your choice. Good luck! Whatever decision you make, it will be the right one for YOU!