So in the effort to rule out other possible dx's I had a lot of blood work done. I believe lupus and sjorens (sp) was ruled out. However, my ACE levels which are elevated in people with sarcodoisis were high. I believe the normal range for ACE levels are 12-68 (can't remember the units off top). The first test my levels were 80 and more recently it was 78 -_-. my neuro said I could have a lumbar puncture to see if the ACE was elevated in the CSF. BUT, i'd rather not. I'm a bit freaked out about a lumbar puncture.
My question is, does anyone know if they have elevated ACE levels with a MS dx? Is that really odd?
My neuro is puzzled with scares me. I had a chest x-ray done, and that was clear, so no sarcoid thingy's in my lungs. I read one study were ACE levels in MS patients were elevated and it said there was no need to re diagnose. But the fact that the neuro seems concerned is causing me to be concerned also =[
I guess the first question is "Did you fast 12 hours prior to the test?" since this 40 microgram per liter upper level is a fasting value? Increased ACE levels may be a sign of sarcoidosis. However, increased ACE levels may also be seen in several other disorders, including: Active histoplasmosis,
Amyloidosis, Asbestosis, Berylliosis, Diabetes, Emphysema, Gaucher's disease, Hepatitis, Hodgkin's disease, Hyperthyroidism, Idiopathic pulmonary fibrosis, Leprosy....etc.
I haven't read that ACE levels can be high in MS patients. I have heard it isn't uncommon for anyone with auto-immune diseases to have more than one disease.
Neuro-sarcoid is MS mimic so it's a warning sign to be concerned about. I would definitely do the LP as I was informed by several Neuro's that Neuro-sarcoid is difficult to dx without a biopsy (of the lesions in the brain) so I'd opt for the LP over a biopsy any day.
I did the LP because my doctor indicated it was the quickest route to a dx without lesions (as my 1st two MRIs radiology reports didn't catch the lesion that was there) as it does rule in/out many other rare diseases, illnesses and cancers. I was worried about cancer lurking behind the scenes so the LP was worth it to me...actually a fast dx of my Neuro symptoms was worth it to me. I suspect I will have another one in my future as mine was negative (for everything) despite now being probable MS.
The LP wasn't that bad. I ended up with the headache as well and if I had received better instructions I would have gone to the ER much sooner. That is the key - if you get the headache get back to the doctor RIGHT AWAY, they can do things for you sooner than waiting the 4 days that I waited.
PS. GG, when I say "the fastest route to dx" my doctor had focused in on MS but I wasn't. A LP doesn't rule out MS in absence of a negative LP but it can confirm a dx so my attitude in proceeding with the LP had little to do with MS but in the other possibilites. I specifically did the test for all the other things it does rule in/out. We had different motives but each test I've taken has given a clearer picture to my dx which falls down the same path with Bob's post. Ruling out the other possibilities. :)
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