Angela,
I have been having neuro problems, many similar to what you are experiencing for 14 years! I had three bad bouts - 1996-1997, 2003-2004, and now which started 1/29/09.
MS has been suspected on me during each of these, but they have never nailed it down. I will be having more MRI's soon to look for lesions again.
There are many, many neuro conditions that have similar symptoms, and unfortunately, I can't think of one that is diagnosed (dx'd) with one single test. I was dx'd with Myasthenia in 2004, but the other set of symptoms I suffer that are not MG are the elusive ones.
I have discovered through the forums here that certain things affect test outcomes. Smoking within 24 hours of an EMG can cause inaccurate normal readings (for MG at least) - same for coffee and chocolate for 3 hrs prior to the tests. The docs don't mention that to you, and I even asked my neuro prior to my last EMG. She SAID it doesn't apply to tests on peripheral nerves, but I find it very strange that the only EMG that showed abnormal for MG (of several that I have had) is the one where I was hospitalized and unable to smoke for more than a day, and I hadn't had my coffee prior to the early morning test!
Because my neuro wants me off Prednisone due to it's anti-inflammatory properties prior to this MRI, I'm now wondering if the fact that I had been taking 1000mgs a day of a non-steroidal anti-inflammatory prior to every other MRI they've done affected those results as well! I haven't found any info at all on that yet.
I don't know if you're thinking that being sent to a Neurophyschologist means your doc thinks it's in your head, but it doesn't! Neurophysch's do alot of testing to help determine directions the neuro should go in. They look at more than just neuro items - when I went to one she explained that she needed to have my heart tests, my sleep apnea - basically everything that had been done to me. That information, along with the discussions and cognitive thinking tests gives them an overall picture. I think they may be the top of the line docs since they have knowlege of ALL systems. They then recommend other tests that should be done, alternative diagnosis, etc. It just means that your neuro knows there's something there but they need another set of eyes and experience on it.
Good luck with your appointment. Don't forget about the pretesting precautions, and please realize that everyone of us that goes through this neuro nightmare feels the same way at some point! Don't apologize for venting your frustration. That's part of what the forums are for.
Quote:
Originally Posted by abh356
Where do I begin?.. My question 'Is it in my head or is it real' is one borne out of frustration and a comment given to me by a 'second opinion' Neurologist last week. Prior to this problem I led a full life - working, going to the gym twice a week, gardening and living life to the full. Before I got sick, my mantra was 'there's 24 hours in the day - it's there for living'. I see every day as being there for a reason and to do as much as possible however this has now changed.
Last June (08) I attended a function. During the middle of the night, the top of my body was burning up, my legs and feet were frozen. The following day I couldn't raise my head, arms, legs and thought it was the flu. The next day my muscles ached and I had a headache - again I stayed in bed. The following day it had all gone however I had an infected throat and diahorrea with a temperature until 2.30 when it stopped. I went back to work the following day and although I felt weak I put it down to the strange virus I had. My legs were weak and I had pins and needles in both my feet and hands. Three times my legs gave out so I went home; on my way home they fell away from me again and I went to the Doctor who suspected I had Guilliane Barre. Having spent two weeks in hospital having chest, MRI, Lumber and numerous blood tests followed by EMG tests they concluded that I had low Folic Acid and Vitamin E levels and although my lumber test proved I had protein in it I was sent home.
I was given physiotherapy as they were still unsure whether I had GB or not however the Hydrotherapy made me worse; I couldn't get out of the pool and dressing myself was non-existent and afterwards I spent the day and the following day asleep!
Since this has happened I have had more EMG tests, blood tests and have had a second opinion; this took five months to get but it is England! It appears after one nerve conduction test, the Dr who was testing me confirmed that they were testing me for MS/MN/Myaesthenia Graves and Chronic Fatigue but so far they had found nothing. I can walk approx. 300 yards and then my left leg drags. My hands and arms are nearly back to normal however it is difficult opening up jars etc. I wont drive for fear of not being able to stop the car. I still have the pins and needles in my feet but this is getting less. Any exercise I do whether it be going for a walk or doing the cooking ends up with me having to rest for two hours or so; I am completely fatigued that I have to rest. I have bouts of being extremely angry and upset which is obviously frustration at not being able to do anything.
So going back to my original question - Is it in my head or is it real? The Neurologist said my symptons are consistent with MS although the blood tests don't prove it and I am not to under estimate the power of the mind. He is sending me to see a Neuropsychologist and to eliminate the MS, I am having another MRI and had another blood test.
I apologise for not being positive and upbeat - I'm feeling a trite sorry for myself having not worked for eight months as a result and needed to vent my spleen  |