Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
OK everyone good news. One of the other specialists at OSU that followed me 7 years attempting to get a diagnosis has agreed to write the referral so I can go to the OSU MS docs. YEAH. They should call me today to schedule and said they can get me in within a week!
Now that the ball is rolling there. I'm starting to second guess things. Here is my usual pattern:
I will be feeling pretty much normal then out of nowhere get hit with a combination of any of the following variety of symptoms usually lasting 1-6 weeks give or take:
-Almost constant palpitations
-Sweating or flushing
-Nausea/loss of appetite
-Loss of weight (have lost 15 lbs during last 2 flares)
-Overall weakness
-Blurred vision (almost always seems to be right eye)
-Terrible bouts of shaking and tremors
-Severe anxiety
-Debilitating vertigo and lightheadedness
-Horrible back, neck and head pain
-Numbness and tingling in left side of face and/or in left side of hand and arm. (They will actually turn ice cold at times too) This is sometimes associated with an arthritis type feeling pain in that area as well.
-Hearing will go in and out during the episodes.
-And I am always one extreme of body temp. I am either so cold I can't get warm even when it's 80 or I'm so hot I can't get cool even when it's 65.
These symptoms are always accompanied by SEVERE fatigue to the point that I can even mentally function because I am soooooo tired and can't concentrate on anything.
While I do get leg weakness and shaking I don't get the numb legs or paralysis that others get on here. Does that rule out MS? If it's not MS I'm at a loss nothing else fits. And after all the years of testing I'm afraid that valuable time that I could have been getting treatment has been lost.
Thank you again everyone!!!!
Melissa
Now that the ball is rolling there. I'm starting to second guess things. Here is my usual pattern:
I will be feeling pretty much normal then out of nowhere get hit with a combination of any of the following variety of symptoms usually lasting 1-6 weeks give or take:
-Almost constant palpitations
-Sweating or flushing
-Nausea/loss of appetite
-Loss of weight (have lost 15 lbs during last 2 flares)
-Overall weakness
-Blurred vision (almost always seems to be right eye)
-Terrible bouts of shaking and tremors
-Severe anxiety
-Debilitating vertigo and lightheadedness
-Horrible back, neck and head pain
-Numbness and tingling in left side of face and/or in left side of hand and arm. (They will actually turn ice cold at times too) This is sometimes associated with an arthritis type feeling pain in that area as well.
-Hearing will go in and out during the episodes.
-And I am always one extreme of body temp. I am either so cold I can't get warm even when it's 80 or I'm so hot I can't get cool even when it's 65.
These symptoms are always accompanied by SEVERE fatigue to the point that I can even mentally function because I am soooooo tired and can't concentrate on anything.
While I do get leg weakness and shaking I don't get the numb legs or paralysis that others get on here. Does that rule out MS? If it's not MS I'm at a loss nothing else fits. And after all the years of testing I'm afraid that valuable time that I could have been getting treatment has been lost.
Thank you again everyone!!!!
Melissa
Even with stuff on her MRI and inflammation on LP, she was finally diagnosed with ME.
She has seen an MS specialist and he has ruled out MS.
zelinda
How did they ignore your daughter's changes on MRI? I don't understand.
The following tests have all been normal: ANA, Rheamatoid Factor, Lyme Test, TSH, T4, T3
The following have been abnormal:
MRI Brain, Sed Rate, C-Reactive Protein
Sweating or flushing -I thought this was cuz of the copaxone.
Nausea/loss of appetite-gotten better on treatment
Overall weakness
Blurred vision-when tired
Debilitating vertigo and lightheadedness
-Horrible back, neck and head pain (this was bad before diagnoses lasted up to 2 weeks at a time.)
-Numbness and tingling-hands arms at first
And I am always one extreme of body temp.-I am very hot most of the time.
Hang in there keep working towards your diagnoses. It took me 8 months for a sure diagnoses.