Thought I would write another update to save time when I get my test results in 2 weeks!
I am currently going to the Cleveland Clinic....PCP there sent me to an Endocrinologist and a neurologist for evaluation...All blood tests the PCP did were normal.... including Cortisol.
Saw the Endo....he wanted to know why the other docs wanted me to see him....lol! He is sending me for a bunch of blood work and 24 urine test...to test for adrenal tumor and carcinoid syndrome.
Saw Neuro the same day... :D .... she did a thorough exam....left side weakness is getting worse...told her all my symptoms, and she saw my Feb. brain MRI.....she is confident the lesions in my brainstem are causing all my problems..lol...(Big Neuro at UofM said they were nothing) anyway.....she said those lesions would explain all my (MS) symptoms and autonomic symptoms.....
She couldn't believe no one has given me a spinal tap yet OR an MRA of my brain....so this Sat I go for an MRA and an MS protocol MRI of my brain.....then Mon the 17th I go for my spinal tap. I follow up with her the next week.
As far as my symptoms go....my hot flashes are getting better, but severe fatigue is taking over, (I just want to sleep....hard to keep my eyes focused!)..dizziness, along with bad leg pain and weakness, which makes it even more difficult to walk.
If all this comes back negative, I am asking them to test me for Mitochondrial disease.
I will write back when I get the results of the upcoming tests. Thank you to all of you for the support and encouragement!! It mean a lot!!!!
I'll keep my fingers crossed for you. You deserve to finally have some answers and hopefully they can work towards fixing the problems (or at least slow things down if they can't).
Make sure you stay laying flat for a long time after your LP and drink lots of caffeine. Hopefully you don't end up with the headache that I had. Other than the dreaded headache, the rest of the procedure was no problem at all (even though my neuro was in the middle of a hot flash at the time). I thought you had already had one but I guess not.
Laying down was good, and everybody told me caffeine was good, but [Oh, my goodness! When did they add spell-check here? Nobody told me!] the most important thing was to DRINK LOTS OF LIQUIDS ALTOGETHER, ESPECIALLY WATER! We will pray for a good outcome from all of the above.
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