We have to "jump through hoops" for a DX?

[Shandi]

7-8 years ago my husband had 3 instances of ON spaced out about every 18 months. At that time they did blood work for the normal stuff (Lyme, autoimmune markers, syphilis, etc.), a VEP (normal) and a BAER (normal). Only one lesion showed up on the MRI. "Probable MS" and we were told to wait and see what happens; have a MRI in 5 years or so if nothing comes between now and then.

I called this morning to get a neurologist to follow up on my husband's care since he is have numbies in his arm, leg and back and the hospital ER's MRI showed multiple brain lesions. I explained this all to the receptionist and she said she will put him down as probable MS, but you have to jump through a lot of hoops to get a MS diagnosis. HOOPS? Is there something else that classically begins with ON, that has progressive brain lesions, creates Lhermitte's Sign, creates numbness/abnormal sensations, and has tested out of X, Y, and Z?

I am praying for no hoops. We have been waiting for a long time for something to happen so he could get the necessary treatments. I know some additional testing will need to be done/repeated but I am hoping for a quick road to treatment.

[minivanmama]

I am so sorry to hear of all that your hubby and you are going through. I am glad that you have found MSworld.

I hope you get in to see the neuro soon and can get some answers. I am also waiting on answers. I hope that you don't have to wait too long to find out what is going on.

[Stacyz76]

Did he ever have an LP? ( Not that they are always conclusive) MS Dx is hard to come by, especially a "firm" one. Most neuros have their own prerequisites for diagnosing and dont even follow the McDonald criteria. Im sorry that you are having to just through the "hoops" but I think its safe to say most of us have. Some neuros will start treatment at a probable DX so maybe you wont need to wait much longer.
Hang in there!

[Justsayyes]

Don't worry about jumping thru hoops until you see the neurologist. I don't really think it was appropriate for the receptionist to say that......she hasn't seen your hubby's MRI from the ER. I presume that MRI and report will be forwarded to the doc before your appointment?

Maybe don't presume that, make sure that happens or you will be wasting time with an appointment and no review of the most current tests.

[Shandi]

A LP has not been done. I am sure that will be something he will need to do now, although I would rather not When he had the initial symptoms, he had bloodwork repeated three times (CBC, thyroid, toxo, syphilis; the norm), 2 MRIs (went from zero to one lesion at the time), a VEP and BAER. The EPs were normal at the time.

Going to pick up the bloodwork and MRI results from the hospital tomorrow from his ER visit. We were just told that there were multiple lesions that were indicative of MS.

Sometimes the secretaries are just as aware as the doctors, but she hadn't seen his results either I was just really put off by it. He is CLASSIC MS given the symptoms, MRI (placement and shape is right), and bloodwork. It has been years since the EPs so maybe they are funky now; and like I said, no LP yet.

I have done hoops before with my own rheumatoid diagnosis. I believe their delay in looking at things and hence delaying treatment is what disabled me. Since I developed it right after child birth I was told for several years it was postpartum or that I was jealous of my own child. After 5 doctors, one finally listened. I want hubby on medication; I don't want him to be like me in 3 years because of hoops.

[cosake]

I would think that the neurologist could start him on meds anyway. Mine would have with just one incident of ON and 2 brain lesions and blood work to rule out other things (they call it MS-CIS).

I wanted to wait for more conclusive results and just got a positive LP. I'll be starting on Betaseron in a few weeks.

Good luck, and I hope you get the help you are looking for. If not, you may want to look for an MS specialist for a second opinion.

[Jules A]

I don't know why he would need a LP for a diagnosis.

It is my understanding that two episodes with abnormal MRI is enough. I would definitely see a MS specialist asap or a second opinion if his neurologist is a MS specialist.

5 years between MRIs?

[Creede]

Grrrr

I'm sorry Shandi, your story made me agry just reading it!

5 years without MRI after they found a lesion??!! Definately get new doc and MS specialist.

I got MRI's like 4 months apart. And then I jumped through hoops, got second oppinion etc. But I was looking for someone to tell me it was NOT MS. I couldn't find anybody so my ms dx came easy, to easy, for me.

And now I know how important it is to "get on it"! I haven't had any new lesions since the Ty started working for me, but of course they can't fix the damage already done!

As fast as lesions were showing up on my spine, I'm sure I would be in a wheel chair if I would have waited five years.

Good Luck! And hang in there, I know that RA is no fun either!!!