My short-lived new neuro

[TiredPT]

Well, wasn't really expecting this and now I don't know what to think . . . .

Went to my appointment with my new neuro yesterday.  I was pleased that she spent a long time reviewing my records and the timeline that I took (thanks to a suggestion from a post here).  She found some abnormalities in my exam (bascially just sensory abnormalities and increased reflexes, but no positive Babinski).  She has an MRI of the brain and c-spine ordered for April 2nd but I don't go back to see her until June.  

She wants to take the time to gather up a case to refer me to the Mayo Clinic in Jacksonville, FL.  Her thoughts are that this is not MS (I didn't even mention it) because of my tendency to run low grade fevers, have swollen lymph nodes, and frequent yeast infections and the chronic high EBV titers.  She thinks that this is likely some type of autoimmune system or infectuous disease thing that is putting my immune system in hyperoverdrive which is then causing the nerves to be inflammed and cause all the parasthesias and muscle cramping.  She said that the low grade fevers, lymph nodes, and yeast infections do not commonly go with MS.

I've been to at least 6 different specialists in the 6 years since this started and she thinks that the reason that I don't have a diagnosis yet is because everyone is dealing only with one particular area instead of looking at me as a whole.  She is doing a rheumatic panel and some other blood testing but plans to hold off on further testing until I determine whether I want to go to Mayo -- she said if I go, they just repeat it anyway.

Out of curiosity, I called her secretary this morning and asked how often they refer people out.  She said "all the time."  Then that made me wonder . . . . . is she just getting other people to do her work???  I'd love to know what is wrong . . . . . .but Mayo would be a lot of time and expense.  I live in Virginia.  Then got on line just to look at Mayo . . . . I don't even need her referral to get there.

I don't know what to do.  Anyone have any advice????

[Want to feel well!!!]

On one hand, it is very fortunate your neuro is looking at the big picture and seems to be trying to find the right direction for you.  On the other hand, no answers, but it takes time…and I know that is not a comfort for you.

EbV is an odd animal and it seems the medical community is split on it.  It is very frustrating.  However, it does seem doctors agree if the presence of high EbV (IgG) titers exsist along with other abnormally high antibodies it could indicate an abnormal (hyperactive) immune system.  That is my understanding, and anyone else please correct me if I am wrong or have misspoke.

I’m not saying EbV (chronic) alone does not indicate a problem or is a problem, I’m just relating what I have read over the past year and what I have been told by my doctors.

All this said, it seems like you have a doctor who getting you the help you need.  Hopefully you can get your appointments soon!!!

Good luck to you…
Wanna

[TiredPT]

Thanks for all the responses.  

The reason that she mentioned sending me someplace was that she feels that I need to be seen by several specialists (including a rheumatologist and an infectious disease specialist) that are under one roof and working together to collaborate care.  My PCP said that the infectious disease specialists in this area don't take EBV serious and don't believe that it can cause the problems I have . . . . and right now, the high EBV titers is all we have to go on.

Why specifically Mayo?  I don't know.  The secretary said that they refer people to Cleveland Clinic, Bowman Gray in NC, Charlottesville, and Duke among others.  Other than Cleveland, any of these would be much closer for me and possibly in my network.  Don't know though . . . . under an HMO plan.  Guess maybe I need to ask her why Mayo versus someplace else.  She gave me the impression that I would get answers there faster than any other place.

I think that maybe I'm starting to doubt that this is that important.  I always thought of Mayo Clinic as the place that you went if you were in a life or death situation.  Guess that is just my ignorance.   Ironic though, huh??  Now that I got someone to finally listen, I'm confused because I feel as though she might be pushing me off on others just because I'm more complicated than she wants to deal with.  

Like all the others without dx, it isn't that I want MS but it just seems to fit.  The low grade fevers don't make much sense though, I guess . . . . but I've read of others here that have the same problem . . . . maybe all limbolanders like me.  She said that yeast infections aren't any more common with MS -- I read an article recently listing MS along with diabetes and other things as causing an increased risk for yeast infections.

If anyone has had to go through a process of several physicians to figure this out, and did it anywhere close to Virginia, I would love to hear about the experience.

[jensequitur]

Mayo isn't the only act in town, but they do know what they're doing...

However, don't rule out the possibility that you have more than one autoimmune disease.  The article I posted about autoimmune diseases talked about a woman who has five or six.

[Want to feel well!!!]

Has your neuro considered having you see a rheumatologist and or an infectious disease specialist?  They might look for something she might be missing.

Just a thought.

Wanna

[essdipity]

I do understand your neuro's hesitancy. She is looking for a single illness that is likely to be causing all your symptoms, and at this point she isn't finding one. I think that's all to the good. It takes time and sometimes several opinions to rule in/rule out.

Having said that, I'll also say that you should stay away from Mayo if you can. Not that they're not good, and all that, but as Quix has posted here recently, they are philosophically opposed to DMDs unless the evidence is more than overwhelming that they are needed. Maybe that wouldn't bias their diagnostic criteria, but I'm not sure of that. Also, Virginia has some very good MS resources. I'm thinking of UVA in Charlottesville. And if you don't want to go there, Hopkins is a lot closer than Florida.

I do think it's a good idea to get a consult, maybe more, but Mayo isn't the only act in town. You need a group approach to narrow down the possibilities.

ess

[spastic]

Hon, here is what you need to do.  Get all your medical records pertaining to this, your films, discs, dr's notes, etc.  Go to the Mayo clinic and go in as an emergency.  You will see a team of drs and they will come up with a dx.  If you make an appt it could be months but if you go as an emergency, you'll be seen a lot sooner.  Good luck with all this.

Many Hugs,

Ada