Do MS Specialists only see patients with a dx?

[Squid222]

Hello all. I have been lurking around here for awhile, but I finally have a question where I need your help. I have been seeing a neurologist for about a year for headaches and other issues, but I feel it's time for a second opinion.

So, I went to my PCP to get advice on whom to go to next. I showed him my list of symptoms. He tells me that he thinks I should see an MS Specialist. Of course, he told me not to freak out, but it would be better to see someone with the expertise, and he knows many conditions mimic MS.

I called to make an appointment at a well-respected MS clinic, and I was told that none of their doctors see patients unless they are diagnosed with MS. Hmmmm. Ok. So, I called my PCP, and his office called to see if they could get me in....no such luck.

I told my PCP I would do some research over the weekend, and this is where I am. Have you guys ever been in a similar situation? I mean, wouldn't the specialist be the best one to get to the dx?

[heliotrope]

Skip the large clinics. My experience has been that they want referrals, preferably from doctors they know.

Instead, you might want to consider a small clinic. My doctor is a adjunct at a major hospital, but runs his own clinic at a smaller one. I had no problem seeing my neuro - despite not having a clear diagnosis.

[Nutmeg_Nutritionist]

MS Specialists

I was lucky to get my 2nd opinion from a former director of the Yale clinic. He runs a small "MS Treatment Center" in a Plaintree hospital. I walked in with my MRI's and left with a definitive diagnosis and an "angel" waiting for me. This is a volunteer with MS. He walked me out and told me what it is like to have MS. His best advice was to "keep moving." Throughout my 5 years with MS I think of that day and remember his kindness. Hope you find a angel of a MS Specialist.

[mjan]

Well I am sorry you are going through all this.

Yes I was seen by a BIG MS clinic, and 1st appt was months away, until I mentioned my MRI already had lesions..got in less than a month.

But when I had to switch clinics due to insurance changes, the MS doc who was following me for 4 years said, NO, its not MS. HE used to say, "I never rule it out."

So.. I give up on getting a DX and get all new docs. But they all start to suspect MS again. Long story short, I needed to drop off all my past reports and CDs of MRIs before the NEW clinic MS doc would see me. Its just their policy. Finally I get the MS DC.

Sometimes its better to use a smaller clinic as that doc usually is more available and accessible.

Good luck and make sure you let us know how you are doing ok hon?

Warmly, Jan

[Squid222]

Thank you for your replies. I will be doing some checking tomorrow. I am not sure if MS is my problem at all. My future former neurologist was treating me for what he dx as intermittent pseudo tumor cerebri(aka intracranial hypertension). I never really agreed with this, because the tests he performed never backed up that dx.

Also, he has been ignoring all of the sensory and cognitive issues I'm currently experiencing. He wants to blame it all on me being tired. We did find out that both my B12 and D levels are low. I find it rather interesting that I still take naps on the days that I have my B12 injections.

So, I know I will need more tests. I had an MRI of the brain a year ago, and my dr said eveything was ok. I also had an LP a year ago, but he was focused on spinal fluid pressure. He said the LP was good.

Thank you all again for the information. I will keep you posted with progress. I'm sure I will be able to find someone in the Houston area besides the drs in the big clinics.

[salamandertom]

wow, that is just odd. I was referred to a MS specialist b/c my neurologists were just not comfortable proceding with my case of possible MS and turned to the MS specialist for diagnosis.

If I may ask, why not just go see a different neurologist for a second opinion if you cannot get in at an MS clinic? I definately think second opinions are GOOD and called for. (my original neurologist is not someone I hold in high regard) Good luck whatever route you choose!

[Squid222]

Update with Good News!!

I called another university-based MS clinic today, and I got an appointment with an MS specialist next week! I was really surprised that I got in that soon, especially since I was on hold for over 10 minutes before I actually spoke to a person to make the appointment. I'm keeping my fingers crossed that my appointment goes well.

[salamandertom]

fantastic news! i go to a university (well it isn't technically a university - Dartmouth) hospital MS clinic as well. Best of luck - let us know how it goes!

[tambrown]

MS specialists

I see an MS specialist once a year I am not dx d by him my pcp told me yes you have ms an no you will not get a dx of that until you have another flare shown on mri . I went from one lesion to numerous within 3 yrs. It has been 5 or 6 yrs since last flare , I really do think I'm having one now . I get so tired in the shower I have to rest in the middle of washing my hair . So I'm back at the boards to see if I can learn some thing from all the wonderful people here . Tammy

[jazzgirl]

I've been to three MS specialists in my very long journey with MS, and I can honestly say I like my non-MS specialist neuro better.

I know the specialists here generally will NOT see a patient who is not diagnosed with the disease, but their offices are already so filled with patients who do have a confirmed diagnosis that I think they just don't have the time. I know I waited for 3.5 hours on one of my visits to a major MS center here in Philly. It was my one and only visit because, C'MON, I might have MS, but I have a life, too!

Good luck on your journey....