Tuesday, August 23, 2016

Update.... still getting no where

It's been a while since I last posted.... frankly there really isn't anything to update on. I am still facing the same issues and now my vision is even worse. I feel like I have been tossed around and forgotten by the medical field. I have seen more doctors than probably a household would in their lifetime. My last neurologist tried me on Lamotrigine and when I told him it was making my ears ring he told me it wasn't from the medication. However, when I stopped the Lamotrigine.... the ringing stopped too (went back to normal ringing for me).

I have a new Neurologist (actually one I visited in the beginning, but left because I didn't like his office staff). He still very much feels like this is all related to my thyroid condition Graves' disease and the high antibodies it is producing. I guess thyroid antibodies (and antibodies in general) can attack even more than just the organ (organs) they are attacking. I really don't know how to explain this so I will leave it at that.

My recent blood work has shown that my ALT is elevated and it was elevated earlier this year too, which my endocrinologist failed to mention. So I am showing signs of a fatty liver without being an alcoholic and without being over weight. It's like my damn body is just slowly shutting down and I can not do anything about it.

I am seriously thinking about going to Mayo clinic, but I have no idea what they will find... most likely nothing and it will all be just a waste of time.

My vision is getting so bad that watching any type of movement is bothering me. It's like my peripheral vision is getting hung up on my central vision. WHY THE HELL IS THERE NOTHING LIKE THIS IN MEDICAL LITERATURE????? I don't understand this. Why am I having to educate my doctors too and I don't have a fucking medical degree, It's really bringing me down. I am getting close to my quitting point and that scares me because I always said I would never give up.....

Things that I am trying to look into further-

Reducing my thyroid antibodies to see if that helps at all by -
Taking selenium to reduce antibodies or
Taking LDN (Low Dose Naltrxone) to reduce antibodies or
Removing my thyroid to reduce antibodies

Once antibodies are done I want to retest for Lyme as my neuro thinks my high thyroid antibodies are cross-reacting with the lyme tests.

Testing Anti  NAE antibodies to see if I have Hashimoto's Encephalopathy

Try other migraine preventatives to see if I get relief

I am also trying very hard to stay on an autoimmune diet to see if that helps me at all (I've failed miserably at this diet because I already stay away from so many other foods).

So this is where I am.... I never in million years thought this is where my life would be.... at a stand still. I really pray that one day I will post a happy ending on this page and be able to help others to not give up.





1 comment:

  1. Intrigues me deeply to read your post. I've had visual snow since the earliest moments I can remember and my entire memory bank is tinted in my analog fuzz. I actually thought this is how everyone sees until I found it wasn't. In 2015 I lost peripheral on my right eye. I literally woke up one morning after a bad migraine and it was just gone. Neuro found nothing eye doc said my eyes where really healthy (for someone who can't see more than 6 inches in front of them). I ended up at psych who diagx a type of ptsd. A few weeks ago I was in a small car crash I bounced my head on the head rest pretty hard. On the way home I started getting flashes of light like a migraine in my right eye. By the time I sat down at home I realised to my horror I was seeing things from my right eye again. Addition to all this I have an extra x chromosome, diagnosis of fibromyalgia and a heap of questions from neuro. My depth perception has been chronically awful since I was a child. I recently received results showing I had severe vitD deficiency (rickets level) I'm on supplements once a day. At the moment my snow makes me nearly blind in low light. It's distressing and I have a constant semi migraine. Just wanted to share. :) Stella

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