MS?? Very Confusing

I Also posted this on the neuro board and help would be appreciated.

Hi

I'm a 36y/o female. Started having significant balance issues back in Feb/March. Would have several bad days then several good days. Have feelings of spasms in ears and facial pain and numbness as well as fatigue and cognitive fog. Finally went GP mid April had MRI showed "a least 2 foci of T2 hyperintensity in base of right and left pons. (Balance nerve-8th cranial nerve) Went to neuro he does all test says he can't tell could be could not be. Sent me for contrast MRI 2 weeks ago haven't heard a thing. I have a follow up on 26th. They told me he would call but he hasn't. Does this mean I don't have MS or that I do have since I'm going to the MS clinic on 26th. Totally confused and still having problems. Would like some idea so that if it's not MS I can get onto an ENT or something. Any input or expirence would be appreciated. Thnaks much

[Quixotic1]

You non-response from the neuro is iresponsible and deserves a letter to the state board of medical examiners.  I agree, get a copy of your own MRI, (both parts, the MRI on disc or copies of them and the report) and find a new neuro.

I would definitely continue with your appointment at the MS Clinic (same Doctor?)  MS specialists need to be as adept a ruling out MS as they are in diagnosing it.  You said the neuro did all the tests: what were these?  LP, evoked potential and HUGE battery of blood tests?

When I took my foot in hand to the MS Clinic, my instructions to the doc were to tell me it was MS, and if it wasn't to tell me what it was.

When the testing is not diagnostic then the procedure is to repeat the MRI at intervals 3 to 6 months.

Also, if you still get nowhere, you need to see a neuro-otologist.  You can find one in your state by contacting VeDA - Vestibular Disorders of America.

Good luck, Quix

[jcvhr1970]

Thank you for replying. I have had 2 MRI's, contrast and regular lots of blood work, the "work-up" where they do about 1 hour worth of tests i.e. reflexs, rhomberg, walking, gait, cognitive, stregnth... I have not done the EVP they went straight to MRI contrast. So I don't know? I just wondered if it was normal for them not to call? Seemed strange and it sounds like you think so as well. I guess I will hope for the best. How long do the results usually take to be read from a contrast MRI -Brain and C and T spine?? Thanks again.

[Quixotic1]

How long for results.  It depends on the location.  Very rural areas may not get reports back for a couple weeks.  Big medical networks get the results within a day.  Generally the neuroradiologist (who reads MRI's of brain and spine) will read them within 24 hours of them being done.  If we are talking about a small, community hospital, sometimes the radiologist will read the non-emergency MRI's twice a week.

I reread your note.  Have you called the neuro's office and requested the results?  Maybe the callback slipped through the cracks.  Those guys are really busy.  Be proactive in getting your information and inworking toward your own diagnosis.  Passive people let themselves get overlooked.

"It's not the earth the meek inherit.  It's the dirt!" from the muscial Camelot

Quix

[T-lynn]

I agree with Quix.

It took me 6 weeks to get a LP results back and I finall got a hold of the neuro's PA and she faxed me the results.

I'd definatly call the neuro's office and if you get no where there then I'd call the facility that done the MRI's and request a copy of the MRI's  usually on a disk and a copy of the written report.

Be your own advocate.I did as Quix,with my MS specialist,after 2 years of dickering around with Neuro's i found one that deals with MS and told him specifically what is going on.After an hour and a half and 3 inches of med records he stated definatly MS.Gave me literature on meds and told me to get informed.

Since then he's treated it aggressively and I'm very happy with my neuro.

I had also seen a neuro-otologist for balance,dizziness and loss of hearing after several test it was all related back to the MS.

be your advocate and don't be afraid to speak up,to many that have neurological disorders fall through the cracks.You pay these Drs and you deserve a good quality of care

[jcvhr1970]

Thanks to both of you! I think I am being a little passive because I'm afraid and don't really want to know (denail). I'm trying not to get "hysterical" but in trying to not I am making myself crazy (irony!) My appointment with the MS clinic is now a little over a week away. I will try again on Monday to see if I can get any info. I hate to be pushy but you are both right I am paying them and it's their job so if it's not MS I need to move on to someone who can help me. With a family and a job I can't continue to allow myself to feel yucky all the time if someone can help me. Thanks again for your support and advice. This is a really nice forum.