Doctors can't figure it out.

[Hope529]

Hi everyone, I have been having trouble finding out what exactly is wrong with me. Here's the story. About October last year I started not feeling well. Started with a sinus infection, then another sinus infection, and another after that. After antibiotics and steroids. I still did not feel well but my infection was gone. I made multiple visits to the er with dizziness, lightheadedness, chest pain. They discharged me and said it was nothing. On Christmas Day, it was the worst and made another trip to the er where they told me nothing again and sent me home. On New Years I found myself there again and the nice lady doctor who seen me a lot in there told me she was going to admit me because I've been in there a lot being sent home without answers. They sent me to the cardiologist wing were I was there for 3 days. Over the 3 days I seen two cardiologist and a regular doctor. They seen that when I stand up my heart rate jumps high. So they did ekgs and an echo. As well as stomach CT's, head CT's. And found nothing. The two cardiologist said it "might" be POTS and would try putting me on beta blockers. That's where everything got worse. The beta blockers made me not know anything or anyone I would wake up in he middle of the night panicking and having anxiety attacks. My third day on them I noticed that my toe nails were turning blue. I immediately called the cardiologist and told him and he told me to come in. He seen me and told me that it was caused from the meds and took me off them. Then told me it would go away. To this day my toes still are blue and my finger nails as well. Since then I get headaches, every time I stand up I get dizzy where I almost black out. My calfs hurt as well as my joints. I have THE worst fatigue ever even with a full nights sleep and a nap with my little one. I seen my regular doctor where she did multiple blood test. i lost a lot of weight I weigh 105. She tested everything even ANA which came back barely positive she said but said it could be Lupus or RA. So she sent me to a Rheumatologist. Where that doctor did all the test for lupus etc , this all came back negative. So now I'm back to square one where I feel like my doctor is giving up because she cannot find out what's wrong with me. I feel like she thinks I'm making it up and I would do anything not to feel like I have he flu every single day for the past 9 months. I have a child that counts on me and I can't seem to find out what's wrong. Any ideas? I have gone walking in the forest persevere last year a lot but I cannot remember if I had any bites. Idk if it could be Lymes. Idk if it really is POTS my regular doctor had no idea what pots is. So she dismissed it. The only thing that came back was a low functioning gallbladder. I did a lot of reading on that and my symptoms wouldn't be caused by that. So I'm just wondering if anyone had any input it would be greatly appreciated. ):

[Bevvy]

Sounds like it could possibly be M.E. / Chronic fatigue syndrome.... Might be worth looking into. Often this is diagnosed after other possibilities have been ruled out.

[Hope529 in reply to Bevvy]

I will suggest this at my next appointment, I've never heard of M.E but I love heard of CFS. The rheumatologist suggested maybe fibromyalgia but didn't say it was.

[PFKAAde]

Hi Hope529

Not being doctors and not knowing what blood tests they did and therefore what they've definitely ruled out makes it tricky to suggest things...

But have you had your vitamin levels checked? Vit d, B complex, B12 for example?

Also which antibiotic did you have for your sinus infections if you remember?

The flouroquinolone family of antibiotics can have some nasty effects in some people and despite being 'last resort' are used inappropriately sometimes.

Or like Bevvy says Post Viral CFS can be hard to pin down, and treat.

Ade

[Hope529 in reply to PFKAAde]

Routine blood test of complete blood count as well as kidney and liver. Also thyroid, Ana, and just b12. The rheumatologist did the test for lupus. The antibiotic I believe was amoxicillin.

[Hope529]

No. Bottle water and that's it. I cook with plastic.

[Millytain]

Request scan of lymphatics. Do you have any swollen glands?

If these are clear could be ME/CFS

Blood tests do not show up everything - even blood cancer! It took 7 years to discover I had non Hodgkin's lymphoma and then discovered by a fluke.

Incurable as discovered too late after being told it was ME/depression for years.

Don't give up telling the medics how crap you feel!!!

Good luck

[Flamey49]

Hi Hope

To me it also sounds like what Bevvy said, ME/CFS. It can start from a viral infection and you said you had sinus infections. Quite a lot of your symptoms point to it being that.,,,,your fatigue, your muscle and joint pain, headaches. I would speak to your doctor see what they say. The thing is there are no tests for it therefore the diagnosis is made from the symptoms you are getting. I hope you get some answers soon.

[Hope529 in reply to Flamey49]

Thank you all for your help. I added it to the list of thing I want to bring up at my next appointment. Thank you all again ! (: