rose54 22/11/14
Last reply 3 years ago
Negative LP and more sweating

Hi everyone, I have not been commenting because I don’t feel well these days. I went through the terrible LP and finally recovered from it after 4 weeks, only to find the results were negative. I have been on prednisone for 5 years due to lupus, and now I learn that prednisone can affect the results of a LP. Nice that my neuro did not tell me, after all that. He just said that he preferred I was off of the pred. Now he wants to see if I have autonomic sjogrens which takes us in a new direction. I wonder if anyone here has had both or either or for a diagnosis. I was diagnosed with sjogrens a few years ago but never had a lip biopsy. Now my neuro wants me to have a lip biopsy to confirm sjogrens. So how is he going to tell if my autonomic symptoms are from MS or Sjogrens? Is it worth another creepy test that I have to go through. I am afraid of being off prednison without being hospitalized, I literally cannot get out of bed without it. I will become very ataxic, worse than now, and have all the symptoms that I have now only severely increased. I have tried to taped off and it is a nightmare. I stop thinking, I get depressed, I lose my balance, cannot walk, the incontinence is increased, I am nauseated and cannot swallow. I dont want to go through being that way just he can prove that I have sjogrens. freaking out a little here. life is bad enough and then I will be making it worse. .I just want to get some treatment and get well. I am mad that the neuro put all his eggs in one basket with the LP, that he said is 99 percent accurate for MS.

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stumbler
3 years ago

@rose54 , I can understand and sympathise with your frustration.

Unfortunately, you have presented your Neuro with a jigsaw puzzle and they are having problems fitting all the pieces together so that they can see the whole picture.

Diagnosing MS is really a case of eliminating other potential conditions first and no Neuro will give a diagnosis of MS, unless they are sure.

Sjogrens is another condition that they would like to discount, now that they appear to have eliminated MS from their investigations.

Here’s some details for Sjrogens, so that you can see whether your symptoms fit this condition:-

http://www.nhs.uk/conditions/Sjogrens-syndrome/Pages/Introduction.aspx

We have to trust our medical team, to be acting in our best interest.

I do hope that you can get some answers soon, so that you can move forward in life.

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