Waiting for diagnosis

[sageoya]

I have been researching and attempting to advocate for myself for the past two years and still feel as though I am spinning my gears so to speak. I have not yet been diagnosed as of yet but MS is a possibility.  

I am not sure where to start.  Initially I had some sensations that seemed like I was having a heart attack aka chest squeezing heart palpitations. However after test results stated possible "infarct" and low thyroid and vit d levels and two failed ekgs the hospital said I was fine. And I was as thyroid level returned  etc.

Then rt foot felt crushed an numb especially at night. Then leg spasms in which vit d supplement did not help. Spasms and weird cramps. Then weakness on whole right side I my body from rib cage to toes and rt shoulder and back and arm and hand. All right side.

Then migraines in the morning. Then  episodes of blurred vision. And currently other leg is becoming effected.  Legs feel like lead being dragged through mud.

Other important things going on: bladder issues that are most unpredictable or feels like a full bladder and then not (no infection) fatigue to a point of ridiculous extreme   Emotional imbalance. Normally calm peaceful person feeling very frustrated. Cognitively having a difficult time finding words for simple things. Difficulty with swollen glands. And a plethora of other bonus symptoms.  

Please excuse my sarcasm as I know many of you are also struggling far worse than I am. My frustration is over lack of diagnosis and treatment. Currently I am on a vitamin cocktail and migraine med. My brain MRI showed multiple lesions and two in particular in corpus callusum. We have had a wait and see perspective.

Two years ago I could do anything. Now I struggle to get through the enjoyable things in life much less the other things. I am frustrated.

Also MRI was 1.5 tesla spinal was no lesions. I have had Epstein Barr virus in past. I have upcoming appointment with neuro and any advice would be appreciated.

[sageoya]

Your answer are very helpful. That is exactly what my diagnosis is now. Demyelination of central nervous system.   I have medicine for the migraines and vitamins to help with I'm not sure what lol. But the latest thing is extreme fatigue ankle foot leg pain/numbness to a point of I don't feel like I have a leg at times or I I do is wrapped up in cement bandages. Ok just trying to give visual. Actually broke my ankle just by standing up on it. Healed itself before I ever got to see ortho surgeon as I have metal plate in that ankle from previous break. Also weird sunburn feeling on back and spine and my face on one side keeps going numb. I hope everyone else is doing well. I am not normally one to share. But need to  

[HVAC]

The feet sound like mine with Plantar fasitis. The glands would not be MS.  The other things could be MS. Many neurologists like to wait and see over time. There are many MS mimics. Your neurological exam reflexes and such is a big part of diagnosing. They look for changes it it. Have you had a lot of blood work ruling out other conditions? How many MRIs of the brain have you had? Unless MS is ruled out it can take two or more over time. MS is a diagnosis of excluding all other possibilities. Neurologists want to see two different attacks in different parts of the body spread apart in time.

It is good to have one page or less of symptoms. Less is better. Let the neurologist do his thing first then explain what bothers you the most. It is like court just the facts. They are so brainy.

No test rules MS in or out they are just more evidence. Also neurologists specialize. I went to a headache specialist and she said no way did I have MS and tried to treat my head aches. When I said I was there for MS and confused she fired me then and there. I was kind of emotional with her and she did not like it.

Alex

[idntknow]

I know its frustrating to be sick and not know why. I was on the extreme side of that scenario myself.

Back in 1993 I was diagnosed with and I quote, "a demyelinating disease of the central nervous system"

2 years ago I was finally diagnosed with what demyelinating disease, that being RRMS.

Keep in mind I am on the extremely far side of the length of time for a diagnosis.  

The issue is that there are a lot of things that have many of the same medical symptoms.

Keep in mind while its frustrating and slow, you want the right diagnosis and this can sometime not be easy to nail down.