Ok everyone I just need to vent somewhere that people understand. After months of going to the ER, GP, Rhumy, Cardio, Pulminary Doc and now the neuro I am fed up. Although I have been diagnosed with SCLE and not SLE I am in the middle of testing for neuro issues. The neuro said today that he believes that I may be having seizures. Seizures! None of the tests are showing anything (MRI and EMG complete. EEG tomorrow) but seizures! If the type of lupus that I have doesn't affect the organs can someone tell me why I can hardly walk anymore and why I can't remember anything? Can someone tell me why I am having difficulty at my job because I can't think clearly? I feel like I am 70 and I am 41 years old. Test after Test and no one can say exactly why I feel like I do.
I am tired. I don't feel good and I am really sad today and simply needed a place to vent
Last edited by tgal; 03-18-2010 at 04:42 PM.
Reason: correcting topic title
Unfortunately, lots of things don't show up on tests. My Dr. told me that even though fibromyalgia didn't show up on tests that doesn't mean I don't have it. Even though the Drs. thought, at first, that my problems were psychosomatic, I knew better. I knew how I felt and I knew I was getting sick. Otherwise, why were they always giving me antibiotics, etc.? Just keep on being persistent and eventually something will probably show up on tests. If it doesn't, then that doesn't necessarily mean you don't have medical things going on.
OK,. can anyone tell me how to edit the thread title? I should not have posted while I was so tired and stressed because it appears that I can't spell or type
I had an appointment with a neurologist on Tuesday. He noted that I have nystagmus (eyes sometimes don't track properly) and an abnormal Babinski reflex, along with the peripheral neuropathy. He wants to test for MS, whcih means more blood work and yet another MRI. When I saw a neuro back in Texas my MRI was normal. When I pointed out that my symptoms might overlap with CNS Lupus or Sjogren's (both of which I have), he simply dismissed them. That made me mad, because all you have to do is look at several articles on the Sjogren's Foundation site or Sjogren's World site, and there is a lot to learn about neurological manifestations of Sjogren's.
I think that those docs really don't keep up with what is going on in research, unless it applies to their own little corner of medical interest. We certainly found that with my Mom-in-law. Every doc that she saw in Fla. told her that the clot that she had in her lung was inoperable and all that they could do was keep her comfortable until she died in six months. My hubby went online and quickly found a hospital in San Diego that was successfully doing that surgery. He took a leave of absence from work, flew from Texas to Fla., then flew with her to Ca. for the surgery. Her docs in Fla. were pretty surprised about it, and she lived for three more years before lung cancer finally caused her death.
It goes to show that sometimes we patients are more motivated to do the research than the docs.
Go forth and research it yourself, girl!
tgal sorry you are having problems with tests and doctors we have all been through it and understand just keep on fighting you know your own body and donot worry about spelling i am having trouble with spelling and memory also and my typing many hugs kim l
The Following User Says Thank You to rob For This Useful Post:
Rob you make me laugh. Bonita
Me too. I needed that!
Originally Posted by Bonita
Well the doctor called last night and after a week of testing because my body is completely acting like there are neuro issues he informed me that all tests came out negative. It appears there is nothing wrong with me. Well gee! Tell that to my daughter since I can't walk for any length of time and I now shuffle my feet. Tell that to my boss when I start yelling out words that mean nothing. Tell that to me when I begin to smell burning tires and none are around. The list goes on and on but according to them I am fine.
I am tempted to say screw them all and stop going to the doctors. It is what it is and apparently I am going to have to live with it whether I go to them or not,
(Thanks again for letting me vent. No one in my real life understands)
I hate it when the doctors say there's nothing wrong with you and you KNOW something is! I can totally relate to your frustration. Just don't give up! Get a second, third and fourth opinion until someone is able to tell you what is wrong and is able to relieve your symptoms. You should not be suffering.
Many gentle hugs to you.