Well after 3 more days in the hsopital,, they came to the conclusion that they have no idea hats causing the weakness in the legs and arms,, they even did a spinal which showed no inflamation in the fluid and no white cell infiltration, the head rheummy threre said e wasent going to treat something they have no evidence of,, namely SS,, there waiting n mylin test to come back to see if thats the problem,, finger tips are so cold today,, and body temp will not go up regardless of what I do, Lord knows enough doctors saw me over the ast few days,, only good thing was getting the PICC line out,, it has been one ordeal after another,, they suggested that I should go nack on IVIG again,, my immune numbers are down again,, they even did HIV test,, I knew that was going to be negative,, only thing they came up with was low potassium,, heck last week it was to high,, SIGH
navydad
im so sorry, i know you were hoping for a better outcome than this :( , truly hope they can sort it out, and come to some kind of agreement , its a nasty illness , it lurks and hides it seems, keep the faith were all thinking of you
T x
Sorry that the doctors aren't able to identify and treat you ??? I can't even begin to understand the level of frustration you must be experiencing. I hope that you find some relief soon.
Navy Dad, sorry to hear you are down again, and hope the Docs soon come up with something that makes you more stable... It certainly seems complicated, but then that's this S thing ain't it ? Hope tomorrow is a better day, meanwhile I send up prayers for you, God Bless Dolly
Hi Navy,
I am sorry that the tests are not helpful. I am sure you already know this, but if your potassium is messed up, that is huge. I went through that due to an eating disorder, and I couldn't feel from the waist down. However, you said that it was high last week. Its just hard to believe that the doctors cannot figure out what is going on. Please take care.
Designer
I hope you get answers soon! Best of luck to you and I hope you have a speedy diagnosis and recovery!!
navydad, I am so sorry you are having such a time. First of all, did you tell them that the way you understand it one doesn't have to have positive blood work to prove you have sjogrens. Also, with the potassium issues you are having I am wondering if you have been checked for renal tubular acidosis which can accompany sjogrens This problem affect the kidneys and the potassium levels and can cause weakness.
I don't know what to tell you, but have you considered seeing a different neurologist. It takes perserverance to get health issues identified with this darn autoimmune. Keep on trying to find out. If necessary have one of your sons go with you to the doctor to help you out. When we are a patient we get so tired of doctoring that we lose our steam and fight. Sometimes a relative has to help us out. Good luck. Irish ;D