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Posted By : mentalcompass - 5/31/2011 10:58 AM
Hi Everyone. I've been out-of-pocket for some time. I wanted to drop in and ask a few questions. I finally saw a good neurologist for the odd pins-and-needles pain up and down my left arm, stiff muscles, weird feelings down left leg. While the problem isn't as painful as it was, it's still there and it somehow seems to be more systemic. For example, I get dizzy and feel nervous, not sure why, but I know that just a small amount of caffine sends me over the edge.
My neurologist did the SPEP test and found a slightly elevated level (0.3) on protien band one. He sent me today for the serum immunofixation test just to make sure there's nothing there. He said the protien band level was just barely out of range and he wanted to be sure. But, I'm scared, naturally, and having to wait a few days to hear back on this. Anyone else had experience with this?
Thanks for reading

Posted By : mentalcompass - 5/31/2011 5:09 PM
thanks Paula. it's not a coward's job - pushing forward through all these test. so hard to keep my fear in check but the longer this goes on, the better i am at controling myself while i wait for news. thanks for the response. i think i will post this in another section here too, can't hurt.

Posted By : Chutz - 5/31/2011 11:36 PM
Hi Mentalcompass!

Good to see you again. I'm sorry you're in limbo right now. None of us like waiting for's frightening not knowing...but we all know at some lever that it can't be helped. You can always hang on to us when you feel shaky...before or after the test results come in. Someone is always around who can post or chat with you. We all become pretty darn good at 'hand-holding'.

Please keep us posted on the progress, OK?
Moderator on the Fibromyalgia and Chronic Pain forums
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
Use the talents you possess, for the woods would be very silent if no birds sang except the best.

Posted By : mentalcompass - 6/1/2011 6:15 AM
Thanks, it's exactly what I was looking for. I had hoped the doc would call and explain the results last night, as she promised, but she didn't. So here I set, a half a Xanax down already, waiting for a call from the blood test. Worst case I will hear tomorrow. I dont even know what part of the Sepe they found the elevation on - I'm guessing gama because of the second test they sent me for. I am not good at waiting for things but this journey into my health is teaching me to have patience and be brave. I don't feel like either today. :)

Posted By : Blessedx8 - 6/1/2011 7:27 AM
I'm not good at waiting for things, either.  I'm sorry this is causing you so much anxiety.... like Chutz said, we are here for you!  I hope you get some answers today. 
Yep, the health journey has taught me many things, too - patience being one of them.....  but, again, the waiting is the worst....
Again, hope you hear today. 

Posted By : Chartreux - 6/1/2011 7:44 AM
You should probably wait and see what your doctor has to say...I know waiting can be so
very hard, but the two weeks to get results seems like an eternity but try to keep
busy...and please keep us posted when you get the results back....will be thinking of you.
well wishes
it was a blood tests to check for disease, such as autoimmune ect...

Posted By : mentalcompass - 6/1/2011 10:05 AM
thanks everyone. so, i got the labs from the first test, all my blood protiens are normal; however, it says abnormal protien band 1 at 0.3H, when non are supposed to be detected. Then it says possible monoclonal protien (m-protien) present. suggest serum immunofixation (that's the test I'm waiting for). they give this test to rule out blood cancer, such as Myeloma or a few others.

Now Doc called today and said the levels, 0.3, were very low and he tends to think it was either a lab error, or because I was really sick when I took the test. I was super sick with some horrible flu-like problem. So, he told me not to worry and if the results from the new tests shows something, he and I will talk. At that point, I move to a oncologist and it creates a huge mess of tests, including a bone marrow biopsy. So, lets just pray this is nothing because as freaked out I am on this, I don't think I could handle going through the rest of these test to determine such heavy duty stuff.

I just want this all to go away, I so want it to go away. Ya know?

Posted By : Chartreux - 6/1/2011 5:41 PM
Hoping for good results for you..
many prayers and yeah sure wish I could help take it away from you...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Posted By : JAK71 - 6/7/2017 11:37 AM
Hi There,
I see you haven't posted on here in a while. I seem to experience similar problems - did you fine some resolution in your journey?

Posted By : straydog - 6/7/2017 1:16 PM
JAK, this is a 6 yr old thread & the OP has not been back here since the above date.
Moderator in Chronic Pain & Psoriasis Forums

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