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Unknown illness

Autoimmune Diseases | Last Active: Oct 29 7:56pm | Replies (48)

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@supernat10

Thank you, it means a lot. I feel like I've been struggling to find a proper diagnosis for so long now, it's debilitating. I am seeing a neuro eye doctor actually. He did several balance tests, and I failed those, so have to go back in for more balance testing next month. He didn't really have a reason nailed down for the double vision yet. I have also suspected MS. My laundry list is so long I didn't include it in the original post, but I've had or have: double vision, brain fog, fatigue, chronic cough, trouble with breathing deep, random pains above my waist all over, pins and needles in both hands, muscle spasms/twitches random places, vertigo (only when I lay back), pulsatile tinitus, and weak muscles when I stand up after sitting a while (feel like I'll fall over sometimes although I never have). I also forget a lot and can't think of words often. I went to Harbor Freight with my son yesterday, and we were inside the store not more than a few minutes, and I had to ask him where we were, because I couldn't remember the name. These don't all come at once, but have been present over the years when I go through these flare ups. I had a brain MRI a couple years back due to these, which was normal, but have never had a spine MRI. My neurologist didn't think it was MS, because I still have good control over my muscles. I'm also aware that many people suffer from MS limbo, and I wouldn't be surprised to find that's what I've been in. I'm hoping it's not that, but finding out it was would be a relief.

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Replies to "Thank you, it means a lot. I feel like I've been struggling to find a proper..."

@supernat10 Sounds like you’ve been trying everything possible and getting nowhere. Can you call GARD ( Genetic and Rare Disease organization):
https://rarediseases.info.nih.gov/ Or NORD (National Organization for Rare Diseases):
https://rarediseases.org
These 2 organizations are there to help persons with autoimmune diseases and, in many cases, help with finding doctors. If it means going out of network, ask them the best way to do that. I would suggest asking for a rheumatologist.
Does any of this sound doable to you? I hope you will do this. You really need some help.