Everything Negative

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Rovngypsy
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Date Joined Jan 2010
Total Posts : 18
   Posted 12/23/2011 5:19 AM (GMT -6)   

Okay, been a little while since I last posted, and thought I would give you all a follow up of what has been happening.  Started seeing a neuromuscular doctor last of October, I think. Her first thoughts were my symptoms definitely sounded like MS, but of course wanted to find out what was really going on.  First of all, she is fantastic and I value her opinions and diagnosis. Don't think I could have gotten referred to a better one, for sure.

 
Went thru the nerve conduction studies and found I did have some problems with loss of muscle function in rh leg and the nerves in my feet are just shot. Before doing the study, was asked to put my hands & feet in warm water. When she came back in to start the test, I was shaking so badly, couldn't write my name if I tried and I was very weak and so tired. Felt like my brain was jumbled & confused, couldn't think straight and was really happy to lay down for the test.  Other than the above, everything else was in normal range.
 
She sent me for MRI of brain and cervical.  Brain one showed small amts of "white matter", inconclusive for MS and could be from natural aging. (I am 58). Cervical show DJD. Since I am on disability because of lupus, I did not want to do the Thoracic & Lumbar MRI until I paid my part of the balance of the first two. My doctor understood this and a day later she called & wanted to know if I would have the lumbar puncture done.  Said it would be less expensive than MRI's and if the MRI's were negative, then she would do the LP anyway.  I agreed and the spinal fluid was also negative.
 
Symptoms have not changed any and during two wks of this month, had several episodes of "loss of bowel control".  One of which was in a public place and naturally I was very embarrassed. I don't get an urge to go & I don't feel anything when I do go like that.  Swore I would not go out in public again.  My sister was with me, thank God and she was a huge help, however I felt so humiliated and degraded. Still having the problem with getting so hot and when I do, I get those horrible shakes and just feel awful. Feels like a "limp rag".  Have not had any episodes of numbness for a few months.  Still getting dizzy and having blurred vision at times. Last Sunday, I did have the feeling of my rh foot was just heavy.  I was sitting down, and it was awkward when I tried to move it.  Seemed to just hang                                                                                                                                                                                                                                                                                                                           be hanging.
 
Saw doctor this week and we went over everything and she still believes I am having symptoms of MS, but just does not see anything clinical.  She says you could be symptomatic for years before anything clinical shows up.  ?????  I know I was sick for about 13 yrs before being dxed with lupus, therefore I can understand this as well, especially since they are both autoimmune diseases.  She wants me to see a specialist at the MS clinic at Duke.  This recommendation came before the results of thoracic & lumbar MRI's and since they too were negaitive, it must not be MS and evidently it is my lupus causing the problems, which is highly possible.   I can't afford to keep going with all the tests and doctor bills.  But, I hate feeling like this too.  However, being diagnosed with MS, is not going to make me feel any better.  I think at this time I will just wait and see what happens.  Either something new will happen and it will be easier to see what it is or this is it.  I'm so tired and it's hard to continue going to doctors when you feel so miserable.  
 
Thanks to those of you who replied to my previous posts and thanks to all who may reply to this one.  If you have any opinions or advice, I'm definitely open to suggestions. 
 
Happy Holidays to All!                                                

Rovngypsy
New Member


Date Joined Jan 2010
Total Posts : 18
   Posted 12/23/2011 5:30 AM (GMT -6)   
And I forgot this part. When in the MRI machine for the lumbar & thorasic scans, I had to be pulled out because the machine was making my back so hot, I started shaking and my left leg started to spasm.  I did not feel well at all.  Had that same weak feeling.  The tech tried to tell me I was having a panic attack, but know better.  I have had plenty of MRI's and it never bothers me.  I'm one of the people who like tiny spaces, because I feel secure.  Never, ever hhave a problem with claustrophobia. She got a fan and let me lay there for a few minutes to cool off.  I wanted to sit up, but she would have had to reset machine and I would have had to pay for an MRI that didn't get completed. After cooling off and she turned up the air in the machine, was able to finish the scan and fell asleep during the second part because it wasn't as hot.  If I was having a panic attack, I don't think I could have been relaxed enough to fall asleep.  I've had panic attacks before, many yrs ago and I know what they are like and this was not a panic attack.  thanks again.

whytdrgn2006
New Member


Date Joined Jan 2012
Total Posts : 4
   Posted 1/16/2012 11:44 PM (GMT -6)   
So sorry you are suffering with so much. I am 49 and have been sick since I was little and was only dxd two years ago with lupus, vasculitis, ankylosing spondylitis, and MS allot which are autoimmune. I too suffer weird heat and cold related symptoms. I will get so sick and nauseous and shaky if I get hot or humidity is high. Unfortunately, I don't typically sweat so I overheat way too easy in the heat. When it is cold I will feel hot all over and sometimes start to sweat like I'm in a sauna. The only thing they give me are steroids and now I have severe osteoporosis causing me scoliosis of my upper spine. If your doctor is trying to get you sent somewhere else she knows it is better to be treated for MS early rather than 10 years later or more like me. It could save your brain cells in the end but it isn't cheap. Good luck!
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