Good luck to you, and I hope your wait for a diagnosis isn't too long. I'm new to this site, and I like it a lot. I was previously at a different MS site that I don't want to name. There were some nice people there but the rules were ridiculous, and one of my buddies brought me here, thank goodness. But without that place, I don't know how I would have learned much about MS, since I don't know anyone with it!

I wouldn't have had a diagnosis so quickly (five months) if it weren't for my wonderful PCP. I was ready to quit all the tests, and I was doubting myself, wondering if it was all in my head. He kept assuring me I wasn't losing it and kept pushing me until we found the answer. I have everything from the other doctors, neuro, MS nurse & MS doc, sent to him to make my life easier, and I see him once a month, if only to get my Vitamin D checked. I've had really bad PCP's before, including one several years ago who told me I had a clean brain MRI when it really showed two active lesions--and I really feel blessed to have found the doctor I have now.

I wish I would have thought about insurance more though. Not health insurance exactly, but things like long-term care and home health care insurance, just in case. I tried to get vision coverage and was denied as well, even though I've never had eye problems beyond needing glasses.

Let us know how things go, and welcome to the site.

Hi Susie,

Sorry to hear you are having such problems. Also sorry to hear that your wait to get in to see a neuro is SO long.

Personally, I might look for another doctor and get in sooner. (Keep your July 6th appt anyhow - as you might want a second opinion.) Can you tell this neuro that it is an emergency? This sounds pretty emergent to me. Then again, I think that when it comes to these symptoms and problems with the brain - it is an emergency to me. But if this original doc can't get you in sooner than July 6th - I'd find someone else for now. Besides - you will need lots of testing done - so getting someone to start that as soon as possible would be good for you. Your GP could probably order many of these tests, too, but having a full neuro exam sounds like it needs to happen.

Wish I had more to offer.

Good luck and keep us posted,

~Keri

I wasdxed by a regular neuro. but he had guy doing evoked potentials in office, he did LP (Lumbar Puncture) himself and I had no side effects, Blood tests, but hated his manner, saw a specialist in MS Center at UMM (University of Maryland). 1st appointment took 2 months, after never had to wait for help or anything. Now go to Johns Hopkins MS Neuro., once in, no problems. Baltimore only 1/2 hour away. Getting right neuro hard. Can take awhile to find right fit.
I did 3 times, but they all moved away!!! On my 5th now. Was DXed only )?) 7 years ago.

What April says is true. Get insurance befor DX, once DXed with MS, Insurance hard to get. If going for Disability Insurance, if needed think about job specific so they don't insist you do something else. Once DXed, insurance hard to get.once I was DXed, we were sure to insure DH for Life and job specific Disability ($$$!!!!) but he is primary wage earner and college for kids coming up soon.

It's me again--Susie
 

Dear NT Friends,

I'm writing to give you and update and to ask some questions I'm hoping someone can answer for me.

I tried to self-refer myself to the Mayo Clinic in June. I was not awarded an appointment. I finally saw a neuro doc at UNM on July 15th.

My condition has gotten progressively worse over the past three months.
The daily fatigue, muscle stiffness/weakness, and blurred vision have caused me to give up my teaching duties for the fall semester. I use a cane now for treks of more than 100 feet or so.

A myriad of blood tests have all come back normal including tests for Lyme disease, B12 deficiency, thyroid hormone imbalances etc.

I had three MRIs on Aug 5th--brain, cervical spinal cord, and thoracic spinal cord--all came back normal.

A couple of questions here:

My first symptom--a visual field cut in one eye was experienced in July 2008. I have had progressive symptoms since April of 2009. How unusual is it for a person with MS to be MRI-negative under those circumstances?

My MRIs were performed on a 1.5 Tesla magnet w/o contrast dye. Terms such as T1-weighted, TSE T2-weighted, FLAIR, MEDIC etc. appear on my reports. Does any of that make any difference in the quality or resolution of the images?

I had a VEP study this past Monday--no results yet.

I had an EMG study today--results were normal.

The techs who performed my MRIs and my VEP, and the doctor who performed my EMG all asked me if I'd had a lumbar puncture yet. I have not.

Is that normally the next step??

Thank you for your help.

I am so grateful for this forum.

Susie

An LP is normally the next step, but usually follows positive test results from the MRI. What they are looking for in an LP is oligoclonal bands, which indicate myelin breakdown.

You need to know that there are folks here who have similar symptoms to what you are having and still haven't been diagnosed because they don't have enough evidence to be positively diagnosed and doctors hate to label someone with MS until they are sure.

It's commonly called "Limbo" here. I don't have any experience with "Limbo" since I was diagnosed after one incidence of optic neuritis, but there are folks here who can help.

1.5 tesla MRI is not the best, but it is what most of the hospitals have since MRI machines are so expensive. Having an MRI w/o contrast is unusual when they are checking for MS since it's the inflammatory process and lesions that are active that show up with contrast. T-1 weighted, TSE T-2 weighted, etc. are all terms used to describe the images they are taking.

Since you have had incidences of vision problems, I would say wait for the VEP results and go from there.

Even when the tests all come back negative, you know something is going on. It may be that nothing is showing on the tests yet, but it's happening subclinically. Have you done any steroids? A round of steroids may help to relieve the symptoms, even without a diagnosis. Talk to your MD about it.

Let us know what comes of all this! We are here for the duration and we care. :)

Limbo yes--steroids no
 

Thank you for your response. Steroids have not been suggested. I admit to being scared of them!

I'm in limbo too
 

Hi Susie,

I completely understand what you're going through!

My symptoms are driving me crazy - I'm frustrated, I cry most days, I can't do what i want with my 2 young boys (i'm also a single Mum) and I just want answers like you!!
Like you, my gait is effected too - I can't stand for more than 5-10 mins either, and at the shops I shuffle on a bad day, or on a good day I limp.
I did apply to the council and got a disabled sticker, even without a diagnosis - category 2 - which just gives me double the time in a car parking space. (can't park in a disabled space). But it helps a bit.
It doesn't effect my eyes, but I have lots of tingling, numbness, burning, stabbing pains, heat intolerant, rib pain lately, that might be the 'MS hug'....

My first brain & c-spine MRI and VEP were clear back in May. Contrast wasn't used. I'm due for a T-spine MRI in 10 days, 1 hour!! (not counting at all....)
My bloods are all clear - although Epstein Barr was also detected. (I think I had it as a teenager).

Someone correct me if I'm wrong, but is there a link between EBV and MS??

My sister has probable MS, and my aunt has it. (I've read there's a very small chance -10-15% of having MS if a family member has it).

My neuro tried oral steroids for me.
It only worked for the tingling and some numbness, and made me really tired. But it IS different for everybody. From what I've read on this forum it has helped a lot of people though.
Your neuro will discuss the side effects etc with you before prescribing. It's your decision though.

Please PM me at any time - the serach for 'finding out what's wrong' really sucks, and we need all the support we can get at this time.

:hug:

Michelle

Welcome from me too.

Sorry you're here, but what a great place this is. You'll find all the support you need here. They all give good advice too.

I just tend to prattle on about stuff, but most of the others can be relied on for good information. :eek:

I was a quickie. one week wait for mri then diagnosed within the hour. My brain looks like an apple tree. Hope you don't have to join us for long.

I don't feel so lonely now:)
 

Thanks for your note, Michelle. It helps to know I have company in limbo. I have heard about a link between EBV and MS.

No one in my family has MS. I am 55 years old.

Have you had a lumbar puncture yet?

Susie