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Frustrated with symptoms, docs

Mar 30, 2015 7:32 PM

I have many health issues. Poor immune system due to having pneumonia at birth, asthma, allergies, chronic back pain that they say is degenerative disk disease (I'm 49). I was dx with clinical depression over 30 years ago, Fibro 2 years ago, and bipolar 2 about 10 years ago. PTSD, ADHD (I disagree) and major anxiety this year. In 2003 I developed a blind spot in my right eye. They suspected MS But MRI and lumbar puncture were negative. They said it was optic nerve damage from a virus and it would either improve or it wouldn't. It didn't, and in the last two years it has worsened. Two years ago I woke up one day with another blind spot, in my left eye. It is permanent as well. Again they looked for MS, did not confirm it. They sent me to a neuro ophthalmologist who sent me to a retina specialist, who dx'd me with serpiginous choroiditis. It might stay the same, it might worsen, I might even go blind. I have a number of MS symptoms, some come and go, some stay. Balance is crap, word salad/can't get words out/can't find words, cognition and retention problems, numbness, tingling, skin pain that comes in patches, double vision in my right eye now, severe exhaustion and fatigue, and more. Yet I can't seem to get a doc who is taking me seriously or pursuing possibilities. They see I have fibro and am bipolar and blow me off as if I'm just being dramatic. I left my former pcp when I tried to ask her to help me and she told me to see my shrink. I had neuropsych testing that came out suggesting due to my cognition difficulties (which are causing me big problems at work) I should pursue long term disability. I want to find out if SSI or SSDI (I don't know what's what) is a possibility but am pretty scared of the fact that I have all these problems, any of which might not be severe enough but combined might be - and I am not sure doc records are accurate or which would support my filing. Just totally frustrated - I feel like I'm a walking disaster and can't get help.

Mar 31, 2015 1:34 PM

Padfoot, I'm sorry you are hurting and are so frustrated. I totally understand. I've got many diagnoses that overlap and like you, fibromyalgia that causes doctors to blow everything else off. I havent worked in nearly 5 years because a mass caused so much internal damage ive been under contstant care. I had to hire a lawyer because I was turned down for disability. Its a frustrating path but one we all must walk. I'll pray you get help and some doctor will listen. 🙏🌼

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