MS? what to do next

[bilelloe]

I am currently undergoing testing for MS.  I seem to have all of the classic symptoms.  Most of the symptoms I have had since I was about 15, I am now 48 and the symptoms are only getting worse. I have seen doctors in the past  but was always told I was anemic or had low blood pressure.  I am having an MRI today, if the tests come back inconclusive what would you suggest as my next step, because the symptoms are definitely not getting any better?

[tremors10]

I am in the same boat. I saw a neurologist who spent 10 minutes with me who just blew me off. I had a brain MRI (ordered by PCP) without contrast that came out normal and so the neurologist ordered an EEG. When that came back normal, he said that I had no indication of any type of neurological issue. How can he tell?  While I was in his office, my body was tremoring so bad and he asked me if I could "stop that."

On a daily basis, I have blurred vision in my right eye, general feeling of weakness on my right side and some days, it feels like bugs are crawling up my neck to my brain. I'm exhausted all of the time, no matter how much I sleep. It's scary when I drive because my right leg shakes so much when I brake. I have "brain fog" a lot and am unable to read for any stretch of time. I'm becoming more and more isolated because I feel so icky that I don't want to go out. I've considered breaking off my 5 year relationship because I completely lost my sex drive and feel so terrible.

I am so depressed and feel worthless now. Thinking that I have to face the rest of my life living like this without any relief or even a doctor who cares to try to find an answer is depressing. If I didn't have strong faith connections, I'd likely be in a scarier place.

Thanks for letting me vent. I hope, bilelloe, that you have more success in getting an answer than I did.  God Bless.

[COBOB]

You want a neurologist to order the study.  You also want a neurologist and/or neuroradiologist to read the study.  Some image centers do 5mm slices where most MS Centers want to see 3mm slices.  You can miss too many smaller lesions on 5mm slices.  

Slice size is more important than most people realize.  A 3T MRI with 5 mm slices does you very little good.  A 1.5T with 3mm slices misses less areas or the brain.

Bob

[HVAC]

Hello welcome. Is a Neurologist ordering the MRI? If so is the Neurologist a MS Specialist? Neurologists specialize. I went to one who specialized in head aches early on so she emphatically said I did not have MS and started treating for head aches.

The process of diagnosis is complicated. You might want to click on the Health Pages at the top right under Discussion to get more details.

A good Neurologist will take a detailed history. Do a thorough Neurological exam. Order an MRI. Depending what the MRI show you might be sent for further tests or be told to have another MRI in six months or so and  see the Doctor again.

Sometimes you will be diagnosed quickly sometimes it can take awhile. I myself showed MS on every test from the beginning and all the blood work showed I did not have other conditions which mimic MS. It took two years of Neurologist saying it is probably MS before I was finally diagnosed.

There is not a set of tests that proves you have MS it is a diagnosis of eliminating every other possibility. A lot of it is in the interpretation of the Neurologist. There are hundreds of Neurological disorders and over 30 mimics to MS. With insurance companies the proof has got to be there because the treatment is expensive. It can be frustrating but you are not alone. This is a good group.

Oh and if you are sent to a MS Specialist you may get an appointment quickly or it might be months out there are fewer MS Specialists. I was confused I thought when my GP wanted me to see the Specialist why was an appointment months out? Was it not important, were they not taking it seriously? They were the MS Specialists are just booked six months or more out here.

Hopefully you will be one of the ones who finds an answer sooner than later.

Alex

[Weatherbee]

I am basically in the same boat.  Just got back my second clear MRI.  The doctor I just saw a couple of days ago, actually said to me..."well, we've actually reached the limit of my training."  And then she went on to talk about how my pulsatile tinnitus symptoms and vision problems 'probably' aren't related.

Anyways, she talked to another doctor, and I'm going to have a CT scan, with and without contrast.  Not sure what will happen next.  I may look for an MS specialist to visit out of pocket.

Hang in there...that's what I keep telling myself.

Teresa