not MS?

[thehoove]

My familty doctor was sure I had MS.  But when I went to Toronto MS specialist they said that I did not have MS because I only have one large shadow on my brain and in order for it to be MS you needed to have two or more.  In the mean time (two years)  I continue to have all the troubles associated with MS.  My doctor has no idea what is going on.  I live in a remote community and do not like traveling to Toronto for all these tests.  Has anyone else had the same diagnosis or have been told they did not have MS then years later been diagnosed with MS?

[summerluvr]

Was this at the MS clinic at St. Michaels Hosptial in Toronto?  I had some bad experience there with the doctor I saw (Dr. M___) I found, he was just so focused on telling me I did not have MS that he was not interested in looking past that and aknowledging that my symptoms were real (he said they were normal for me) and that there was a very serious cause.

Eventually I got sick and ended up at ER,  and from there refferred to clinical medicine for hard to diagnose/ treat people.  form that appointment I was admitted to hospital for bone marrow biopsy and for  immediate cancer treatment..  At my referral the doctors were a bit shocked I was so sick and walking around trying to function.  He asked me... haven't you seen a doctor?  And I told him I had bee in the MS clinic for a year.  He had my MRI reread (Dr. M___) had told me it was normal, and the readiologist found fractures associated with my cancer.

Not saying you have what I have (it's quite rare) but your MRI is not normal, it is showing something and you need your doctor to figure it out and start treating you.  Walking around sick, when you know you are sick, but you have no treatment is so hard.

My  

[tjj3761]

Hello,

Yes, without MRI lesions, MS is a process of exclusion.  It can take many years to get an MS diagnosis.

My problems started 7 years ago and all the neurologists I saw said it was "stress."  I have never had any positive MRI findings.

As of this year, my neurologist who was the first I saw, said that he felt it was MS but unsure as to what stage; therefore, I am still awaiting my official diagnosis.

Over the past several years, I have had the onset of new permanent symptoms with each relapse, which is what I believe pushed it over the edge.  My neuro told me last time that it can take 10 years sometimes to get a diagnosis for some.

Hang in there, stay persistent, and keep a diary of all your symptoms with dates.  This is very helpful for the neurologist.  Also make sure your neurologist gets copies of all your reports if you seen, for example, an ophthalmologist, GI doctor, etc.

terri

[COBOB]

Yep.  In April, I had one lesion on my MRI and Optic Neuritis.  They said if I had two lesions they would have called it MS and started treatment.  They did the MRI with 5 mm slices through the brain.  A few weeks ago I had a second MRI.  They did 3 mm slices and found more lesions.  Were they missed on the first study or are they new?  I'm not sure it matters.  The docs have agreed that I should be treated.

If you have only had one MRI, you should have another following the MS protocol.  It is best if you have it done at the same imaging facility or if you have it done somewhere else, that you provide the new facility with a copy of your first study.  Things get missed.
If you have had an increase in attacks and/or symptoms, that is reason enough to have a second study (especially since you are 24 months out from the first study.)

Bob