xvmom74,

What I thought I had read in your post was you had been evaluated at Vanderbilt, but you recieved no information of the evaluation had found.

That's just how I interpreted what I read. I noticed someone else posted the experience that their records were sent for a 2nd opinion and the records were sent to the wrong department...so he didn't get word on the seconnd opinion and had to find out why, & straighteen it out.

That's why I said fell through the cracks.
i'm not certain about not being impressed by them, I didn't read that in your post. I read you got no word from them after requesting an evaluation.

I did follow the experience of a woman, who went to mayo for a 2nd opinion. She was unsure of her diagnosis. Her insurance company was willing to pay for a consult, but no tests at mayo, because she had already had alot of testing done before her diagnosis.

At mayo, they reviewed her records. At the 1/2 hour consult or what ever it was, a neuroligist told her they were 90% sure she had MS. They recommended she get a neuropsych test as a baseline.

She went home to her treating neuro after that, he had to write the recommendation to get the 2nd opinion consult and for it to be paid for by insurance....So he knew it was happening.

She described her next appointment with her regular treating neuro like this.....

She told him what they had said & what they had recomnmended. Her regular neuro wrote an order for a neuropsych exam. The when she said Mayo was 90% certain she had MS. He said, with a twinkle in his eye "I'm 95% certain you have MS"

After that her uncertainty was put to rest. She uses Avonex now, after having failed at Copaxone because of a reaction to it.

When you think about it, the only thing certain - at 100% certainty in Medicine is death. Everything else in medicine is what it is more probably likely to be.

Maybe you could call and ask for a copy of the records at Vandervilt.

By law you have a right to your records. The institute will not send copies of the records you had sent to them.

They will only send the records they generated for your file. If they sent records generated else where, it would be too much liability to send info from another source. So they will release what records they have generated..that's where their liability ends.

It might be a very good thing for you to see your records.

I'm on disability. When I applied, I needed to sign an authorization form giving SS authorization to all my medical records....

That's when I became a stickler for getting my medical records...I thought I showed know as much about me as they know. And I don't know what was jotted in the records....

EXample for me:
About 10 years before I was diagnosed with MS, I lost a lot of weigt. Since I was overweight that was a good thing. At doctor appointment we aggreed it was a good thing, I did a physical and nothing was found to be wrong....

I got the records and he had written.."I suspect something else is happening because weight loss is too easy"

Not that I could have done anything then, but what I am trying to say its a good thing to see your medical records, you may not have been told all that was in them.

I still think going for another opinion is a good idea, if you can afford it and until you feel confident of the diagnosis, but I also think it would be a good idea for you to find out exactly what your records say.

Oh, just FYI, here is the rest of the story. I do think that unexplained weight loss was MS related. I think I had become depressed because I was getting lost all the time, but I din't go to a doc about that. Heaven forbid Iwas getting lost. But it was also such an effort to bring a fork with food to my moth, I would quit eating. I had a alot of 1/2 eaten $0.99 TV dinners in fridg. I would just get too tired eating them & put them in the fridge. I didn't tell him that, I just said I have no idea why I am losing weight.

So he was correct to suspect something else wight loss is too easy. It was just too much of an effort to eat...i didn't understand how to express that...

Now I know I have MS and it is strange how different things can be tiring, but other things not. I can walk on even ground for about 2 miles. But I get exhausted playing with my toddler neices & nephews sitting on the floor with them. I get exhausted typing in book names into a database where I volunteer. I find that very tiring. But I can walk a nature trail...probably why MS people have so much difficulty with "invisible disabled thing" Theyu don't understand, yes I can walk a nature trail. But playing volunteering can only be done every OTHER day, because I need a day to recuperate!

Definitely see an MS specialist. MS is a disease with diffuse symptoms and is often mis-diagnosed. It demands care by someone who speicalizes in the area.

KansasKerry, I'd also recommend a second opinion on your diagnosis. ONE lesion might indicate a number of things other than MS (officially you need 9 lesions to be diagnosed, but i have 4 and certainly have MS so this is not a hard and fast rule). I know you trust your neurologists, this isn't about trust though. Its about getting the right person with the best experience looking at your case. Your current neurologist would understand that completely, if they didn't, then you must change neurologists as he isn't professional and doesn't have your best interests at heart.

As for disease modifying treatments, the clinical evidence differentiating any of the CRABs is pretty weak, so whatever one you choose is likely to be equivalent (and most likely you will try them all within your lifetime as there is a lot of switching that goes on due to intolerance). Rebif is reported to be more effective, likely due to its more frequent dosing vs. Avonex or Beta. Copaxone is a different class of drug vs. the other 3 and works differently. Its clinical results are not as good as the Beta IFNs, but some patients swear by it. It has the fewest side effects but some people get very bad injection site reactions with it.

There is no good solution here, if you want effectiveness then Rebif seems to be a good choice (higher dose, low dose rebif doesn't do anything). If you want fewer side effects with "likely" similar effectiveness, then choose copaxone (again the clinical results were not very good with copaxone, but real world experience is different).

I am personally on Tysabri, that is my recommendation above all the others. It has shown to have significnatly better results vs. any of the crabs. You just need to deal with the risk of PML if you choose this drug.

Just keep staying positive whatever you do (and choose a low fat diet, do a google search on "swank and MS" for some dietary advice, check out a great site www.ms-direct.org, read books on MS from amazon, and educate yourself). You can impact your course of MS by managing your diet and personal care, plus it empowers you to take some control.

my mistake, the link is www.direct-ms.org

I have to resprectfully disagree with larson101 about the 9 lesions that are required for an MS diagnosis.

Why I am respectfully disagreeing because I have gone through an internet conflict where people on the internret read the 2005 REVISED MCDONAD'S MS criterias.

And the first read the criteria & reported 9 lesion were required. Then more read it & it was an MS free for all....of non medical people playing doc.

What us, & me included did not read carefully enough was the 9 lesions are reqiired for MRI proof of insideous disease progression of PPMS PROGRESSIVE....

BUT that 3 lesions in specific locations are required for an MRI diagnosis of RR MS...not 9!

So that finally resolved that internet free for all. I swear I could see food flying in that thread...

We just weren't reading the critera closely enough..YES Larson101...I'm speaking to you!!

Here is a link to it. I'm sorry my link for it has expired, so I don't have link it's expired - do a search om 2005 McDondald's Diagnosing Criteria...

MRI diagnnosing proof is..

Magnetic resonance imaging (MRI) THREE out of four:
-1 Gd-enhancing or 9 T2 hyperintense lesions if no Gd-enhancing lesion
-1 or more infratentorial lesions
-1 or more juxtacortical lesions
-3 or more periventricular lesions
(1 spinal cord lesion = 1 brain lesion)

-juxtacortical - is outside coveing of brain, edge of brain
-infratentorial- brainstem & below; brasinstem,ceerebellum,spine
-periventrical- lesions attached to walls of ventricles, deep inside brain.

But that's MRI diagnosis. Diagnosis is a combination of MRI I clinical symptoms.

This lik I do have explaing the diagnnosis what the MRI must have witjh 1 clinical episode, what the MRI must show with 2 episodes & the MS diagnosis is bottom line proof of TIME & SPACE.

Time-it progresses over time. either by episode or MRI proof of lesions
Space - more than 1 area of the CNS system.

http://www.mult-sclerosis.org/DiagnosticCriteria.html

you said the MRI showed 3 tiny spots...where were the spots? I'm guessing brain. Did you suffer migraines when you were younger? Migraines can cause scarring on the brain. I think you should try ldn. No special license to prescribe; however, you want to be certain the compounding pharmacy knows the drug. Maybe have it compounded by Dr. Skip in Florida.