Great lesson! bloods results

I had a GREAt one and a half hour lesson tis afternoon from an older man, I can hear men better, he taught me how to use my swanky expensive photo printer.
I think i 'have it' this time.
Now the bloods, they are all absolutely normal, every bloody (scuse pun) one of em.
What the hell is going on that I'm so tired, exhausted, muscles wasting, choking on bits of food, can't put one foot ahead of the other, in so much frigin AGONY, can't breathe right if exhausted, cant speak, get hoarse, douse the eyes with fluid, teeth falling out, can't wear shoes, only fluffy slippers, can't wear anything but baby soft clothes next to skin, have firey hands and feet, knees, elbows and calf muscles.
Now how the hell are they gonna sort all this if the bloods are fine when I get to London. Docs seem to DEPEND on bloods, cos, they do here.
Folks I aint a fake here, You simply cannot fake all this, including the jigging jerking, dystonia and chorea etc.
Has anyone else been in this position.
xx Ann

Wow Ann,

   Did they run a full panel of blood tests or just certain ones? It would be odd for you to feel so badly and every single test come back normal. I'm sorry your not getting the answers and treatment you need to feel better.

   Hopefully, the doctor in London will know more about what to do and order the right tests to get some answers for you. Hang in there, I know you are so frustrated and have every right to be. Take care and keep us updated. You are in my thoughts and prayers.

                                                          Babs

My blood work has been normal all along. Even when the inflammation was so bad that you could see it. It depends on the doctor on if they rely on blood work as the end all be all or if they look at other factors. When I get really bad the only blood test that shows abnormal is my liver function. Even then that is a low abnormal. Heck my white cell count is occassionally a tiny bit high but when that happens most doctors ignore it. We found out the hard way with me it means I have a serious underlying infection that if left untreated will become so bad I have a 50/50 shot of hospitalization. So blood work does not always reflect how things really are because normally that kind of infection skyrockets your white cell count. For me it is so little above the high end of normal that it was missed every single time until I got so ill and my rheumy began looking for when I became ill. Now I have ALL my blood work sent to her. She doesn't do ANA tests anymore on me. It is a waste of time.

Hi Ann.  Hopefully in London the docs will do lots of other fancy tests like EMGs (which check for multiple muscle conditions), CT scans and/or muscle biopsies.  My brain is completely wigged out, but the best my neurologist can do is say "It's from the Lupus."  Anyway, there is lots more fun waiting for you if your neurologist cares to explore.  On a serious note, I'm sorry that you're having such a rough time.  I'm sending you lots of positive energy.  (((HUGS))))  Love, Butterflake 

What is RSD?
My bones are actually very good!
No swelling either.
I am absolutely miserable today. Very depressed.
xAnn

Ann,
I am having the same issue with labs. It just makes me want to scream. So I understand the extreme frustration. I had positive labs in 2005 but normal since and I feel worse than I did when the labs were positive. Before becoming ill I was the type of person who lived by the Motto "If I want to do something I will figure it out and I will do it" I never set still I was always doing something from home remodeling by myself to carpentry and I am not a strong looking person I am 5'7" and 135lb so I don't look like I could do the things I have done. My illness is like my life a contradiction. I am now stuck doing as little as possible my house is always a mess, I have to ask for help to carry things I would have thought were light before, and I can't remodel my house or build anything anymore. I don't have the energy. But my labs are normal. I hope the London Docs can look past the labs and look at the whole picture. Good Luck!
-Kasey

The prozac helps a little. But I am so sensitive to medication they would like to give me more but my body freaks out. The reason is my previous Psych. doc had me on wellbutrin XR for years and it worked great but when diagnosed with sjogren's and MCTD my Rheumy wanted me to see him for pain and he added to my wellbutrin cymbalta. 2 days of taking both together my body went crazy with choreas(involentary movements). Due to this I now can only take prozac every other depression med even wellbutrin causes me to have involentary movements. I think wellbutrin is the best depression med I ever took I would love to be able to take it again. Of course with you having a movement disorder I would make sure anyone giving you depression meds is very aware of that so they can be careful in the choices of medication.
-Kasey

HI Ann. RSD is short form for Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome. It is a painful neurological disease whose hallmark is "pain out of proportion to the injury: ( ie a sprain or fracture). It is unexplained persistant pain.

My leg and foot is always freezing and changes color, goes from normal color to purple.

I had never heard of it before neither until I ended up with it and I wish that I had never heard of it now that I have.

I hope whatever is wrong with you that you can get some releif. My heart goes out to you, hang tight and don't give up.

Connie