Is it MS?

[ack65]

Hi again,

This forum is a great source of knowlege and i sure appreciate everyone's contribution.  I have been waiting 4 years for an MRI (Brain and neck) and now the results are in and there are "areas of hypersensitivity in the white matter" are not typical of MS in my brain, the cervical was normal.  My symptoms however are very typical of MS.

I am on my second Neurologist, the first diagnosed Migrains with only a CT scan, and am trying to get him to do a MRI of my spine to see what it shows.  My husband likes the diagnosis of Migraines as it is less scary.  

I do not think Migraines explain my muscle spasms and weakness, blurry and double vision, lack of balance, feeling like I am about tto fall over (even while sitting now), and bladder urgency.  Oh yeah and the weird feeling that you all just described as the MS Hug - I was in emergency for that in October - they said it was cramps and once 2 years prior with the same thing - that was a panic attack according to the hospital.

I am so frustrated.  Now my husband is worried that I am on line here and that I am invested in being diagnosed with MS.  I told him I am invested in being diagnosed period and then getting some help with my symptoms.  So far for the last 4 years I have been left to struggle through this with no help.

So I am wondering if there are others who have had atypical results on their MRI and still were diagnosed with MS?  I am sorry I do not have the exact wording of my MRI report, I forgot - another symptom I've been experiencing.  I never thought to ask for a copy but will from now on - thanks for that idea too. A

[ack65]

Thank you so much for the encouraging words.  I had to leave my previous doctor of 12 years last year because she refused to send me for an MRI.  

At that time I could barely walk - was using a cane - and my legs felt like lead so going up and down stairs etc. was very difficult.  It lasted about two weeks and my Dr put me on prednisone so by the time I got to see the Specialist (she sent me to a Rhematologist) I was doing better and after a 15 minute appointment he poked me a few times and then said I had Fibromyalgia.  

There was no follow up nor meds for my symptoms except my Dr told me to take Vit D as the blood tests showed I was deficient.  I am now with a new GP and that is how I finally got my MRI - she referred me to a neurologist as she thought my symptoms sounded like MS.

I really hope I don't have to switch again - but I will because I need answers and treatment.  Reading about the perserverence of others has helped renew my resolve.  Thanks, A  

[essdipity]

We see your story so frequently here! 'Migraine issues' seems to be a dumping ground when the doctor is either ignorant or uninterested.

We do know that you're not invested in getting a diagnosis of MS. Like thousands of others, you just want to know what's going on so that you can deal with it.

I can't imagine waiting 4 years for an MRI! And it did show abnormalities, surprise! Not all MS brain lesions are 'typical,' by any means. It's just easier when they are.

I suppose the neuro isn't doing anything to help your symptoms, and if so, you do need  to see neuro #3, hard though that may be. You need someone who truly is an MS specialist, but most of all, not someone who is afraid to diagnose or who hides behind the technicalities of diagnostic criteria.

My immediate advice is to go back and get the actual films and reports for all the tests you have had. Keep a file of these, and maintain a timeline of symptoms. This may well help as you continue your journey.

Sending best wishes,
ess

[Wobbly]

Hi there.. sorry to hear your going through Limboland, like so many of us have and are still in.  It took me over 4 years and many tests, MRI, Neuro exams etc to get a Dx.  

have they checked for other mimics of MS..as you probably already know the symptoms could be from so many things.  Have you had other MRI done previously?  any changes inthem...?  

what did the Neuro say...did he tell you to come back in 6 months??  keep track of your symptoms and do you get copies of all your tests?  MRI, blood etc.

hope you find answers soon

take care
wobbly
dx