I am looking for some input or suggestions from any of you.
I have been unwell since May 2011. Symptoms varies involving my brain, eyes and whole body. I still have not gotten a diagnosis till today. I am just wondering if it's worthwile to make a trip to the Mayo clinic iin Minnesota to get a second opinion. What's your opinon on this?
If you would like to read, below are the list of my symptoms and progressing. I have very young children and would like to get well to take care of my family. I would appreciate any help or suggestions anybody could offer. I have been to neurologist, rheumatologist, internist, dermatologist, nobody has figured anything out for me. I have been taking Doxycycline off and on for the last few months, it seems to have improved some of my symptoms but not getting rid of them. When I stopped taking it, I eventually get to the point of not able to function with my eyes and brain. I don't know if one can use antibiotics for long term especially on an undiagnosed condition.
It started off with quite bad vaginal yeast infection (never had it before), UTI, bacteria vaginosis, then 5 days later started to develop flu like feeling with not much symptom but general unwellness, weakness, minor coughs, night sweats, day time chills.
Then I started to have scary brain and eye symptoms. My right side brain is like in a shut off state, when people were talking to me, I can hear them but not able to respond, I felt a difference between my left side brain to my right side brain. This continued to today. I am really having lots of trouble doing my work (computer work) as my right brain seems not connected to the left brain, it's like the left side has the full power, but right side only power of 5. Same goes with my right side of head including eye. MRI scan twice all normal.
Other symptoms and progressing over time:
Muscle aches - initially only in my limbs, now widespread to everywhere throughout my body including back, neck, fingers,etc... Recently has gone into my wrists and joints.
Muscle weakness/soreness/discomfort/stiff/tightness - discomfort most noticable when using them and getting worse over time.
Eyes - Right eye always has bloodshot at the same spot, feels different from left. Both will get strained/sore/tightness easily. Doxycycline helped cleared my eyes.
Terrible drowsy/spaced out feeling - used to be really bad at the beginning, seems to have gotten little better over time.
Oval shaped patch discoloration on the chest (size of a pear) - been there since the start, never went away. Skin biopsy revealed post inflammatory hyperpigmentation with rare pitorosoprum like yeast on the surface scale. At times it gets darker.
Chills/low grade fever/funny throat (always having to clear it)
Numbness of arm/hand, sometimes back when sleeping - not neuro numbness.
Funny like feeling now on my feet, arm - as if water or chills going through.
Brain fog - used to be really bad at the onset, seems to have gotten a little better.
Rashes - all kinds including cuts like, bumps with pain, red lines.
All blood tests are normal including MRI, CT scan body and lyme test negative.
Did you have a SED rate test, or a CRP test? They can tell if there is some sort of inflammation going on, and have you had your rashes looked at by a dermatologist? Do they get worse after being in the sun?
Yes, I have the SED rate checked and it's 5. CRP I think I had that done as well, but don't quite remember the result. I have all other types of blood test done and they all turned out to be normal. Doctor said no lupus or RA. I had a skin biopsy done and it said it's not lupus or autoimmune. I noticed some days the skin patch is darker than other days. My facial complexion has changed lots too, it's more rough and darker. I also have two symmetrical red lines along my hair lines just beside my ears.
were you evaluated for PCOS? Just a thought. As far as getting a second opinion, are you satisfied with whatever your current Dr's say you do or don't have? And will the Mayo Clinic's opinion carry weight with you? If so, and you can afford it, second opinions can be helpful.
Always get a second opinion, at least.
But why did you pick that Mayoclinic?
I reccommend picking a specific doctor as well not just the hospital, do some research, and send all your info to the doctor in advance if possible.
Have you had your thyroid tested?
...checked for diabetes?
Which autoimmune tests have you had?
What kind of numbness do you have if it isn't nerves?
I have to say that all sounds like lupus. The problem is getting a positive ANA result to prove it. You can have lupus and the ANA test be negative. You may want to find another rheumatologist even if you have to drive a couple of hours. God bless and keep you!