Aa
More Tests
Oh brother. I really wish that my MS neuro had had my file for my appointment two days ago. He has it now, and a couple of things were missed.
He saw that I have not been tested for copper deficiency and neuromyelitis optica, which he called NMO. I had not heard of that. I was starting to think that was nice, that maybe I have this NMO thing and not MS... until I googled it and realized that NMO is Devic's! Out of the frying pan and into the fire.
So I have to have blood tests for those two things. Darn, wish they would have drawn a few extra tubes when I was there two days ago. He had me get my Vitamin D, Calcium, and something else checked.
The other thing I need to do is get another MRI of my spine. The image quality was too poor due to magnet strength. He wants me to go to the place that has a 3T machine.
He said that if my copper and NMO tests are normal, he is comfortable with an MS diagnosis. But they need to be ruled out.
I am glad that he is thinking for himself and not just accepting the MS diagnosis given to me by the other neurologist. It stinks that treatment will be delayed for a couple more weeks because of this, but that is not long in the grand scheme of things.
Meanwhile, my left leg is getting worse. I am losing sensation in it frequently--it goes numb when I am sitting. And for the first time (and second and third time, lol) I had a bit of bladder leakage. Not cool.
At least my brain is better. When I realized I could once again hold a 10-digit phone number in working memory, I about fell over. Hopefully my brain is on the road to recovery, and this is not just an "MS ups and downs" tease. Nevertheless, I will take the good where it comes. :)
He saw that I have not been tested for copper deficiency and neuromyelitis optica, which he called NMO. I had not heard of that. I was starting to think that was nice, that maybe I have this NMO thing and not MS... until I googled it and realized that NMO is Devic's! Out of the frying pan and into the fire.
So I have to have blood tests for those two things. Darn, wish they would have drawn a few extra tubes when I was there two days ago. He had me get my Vitamin D, Calcium, and something else checked.
The other thing I need to do is get another MRI of my spine. The image quality was too poor due to magnet strength. He wants me to go to the place that has a 3T machine.
He said that if my copper and NMO tests are normal, he is comfortable with an MS diagnosis. But they need to be ruled out.
I am glad that he is thinking for himself and not just accepting the MS diagnosis given to me by the other neurologist. It stinks that treatment will be delayed for a couple more weeks because of this, but that is not long in the grand scheme of things.
Meanwhile, my left leg is getting worse. I am losing sensation in it frequently--it goes numb when I am sitting. And for the first time (and second and third time, lol) I had a bit of bladder leakage. Not cool.
At least my brain is better. When I realized I could once again hold a 10-digit phone number in working memory, I about fell over. Hopefully my brain is on the road to recovery, and this is not just an "MS ups and downs" tease. Nevertheless, I will take the good where it comes. :)
DV - I wish I had that ability to conjure up the presence of people I'm talking about around here. Yes, it is freaky that you must have been posting while I was posting your name.
Thanks for sharing your info with BC.
Thanks for sharing your info with BC.
Buffy, I guess I will have to wait until Monday to get my blood drawn. Unless Quest is open on Saturdays. And then maybe a week for results? Probably same with the radiology place. Maybe next Friday or the Monday after that?
I have already had IVSM. It made me worse, if that is possible--side effects were rough and it didn't improve my MS stuff. This neuro and my internist both think it was pointless to have it at that point, because I had been sick for months.
You know, I didn't even think to tell the neuro about my worsening symptoms when I spoke with him today. I guess that is because they have been incrementally worsening for five months. Just chopping away at me.
Kind of down about it right now. I was trying to do this craft thing that I had done fine a month ago. This evening it was noticeably harder trying to tie ribbons and stuff. I did not realize my fine motor had gotten so much worse.
The neuro said he thought I have had at least two relapses, that it is not all one. I wonder if I am having another one. The problem is that my disability seems to be cumulative so far. I cannot think of anything that has gotten better (OK, besides my cognition the last couple of days).
Could I really be having relapses every six weeks or so? And not really healing from them?
You know, I didn't even think to tell the neuro about my worsening symptoms when I spoke with him today. I guess that is because they have been incrementally worsening for five months. Just chopping away at me.
Kind of down about it right now. I was trying to do this craft thing that I had done fine a month ago. This evening it was noticeably harder trying to tie ribbons and stuff. I did not realize my fine motor had gotten so much worse.
The neuro said he thought I have had at least two relapses, that it is not all one. I wonder if I am having another one. The problem is that my disability seems to be cumulative so far. I cannot think of anything that has gotten better (OK, besides my cognition the last couple of days).
Could I really be having relapses every six weeks or so? And not really healing from them?
I have already had IVSM. It made me worse, if that is possible--side effects were rough and it didn't improve my MS stuff. This neuro and my internist both think it was pointless to have it at that point, because I had been sick for months.
You know, I didn't even think to tell the neuro about my worsening symptoms when I spoke with him today. I guess that is because they have been incrementally worsening for five months. Just chopping away at me.
Kind of down about it right now. I was trying to do this craft thing that I had done fine a month ago. This evening it was noticeably harder trying to tie ribbons and stuff. I did not realize my fine motor had gotten so much worse.
The neuro said he thought I have had at least two relapses, that it is not all one. I wonder if I am having another one. The problem is that my disability seems to be cumulative so far. I cannot think of anything that has gotten better (OK, besides my cognition the last couple of days).
Could I really be having relapses every six weeks or so? And not really healing from them?
You know, I didn't even think to tell the neuro about my worsening symptoms when I spoke with him today. I guess that is because they have been incrementally worsening for five months. Just chopping away at me.
Kind of down about it right now. I was trying to do this craft thing that I had done fine a month ago. This evening it was noticeably harder trying to tie ribbons and stuff. I did not realize my fine motor had gotten so much worse.
The neuro said he thought I have had at least two relapses, that it is not all one. I wonder if I am having another one. The problem is that my disability seems to be cumulative so far. I cannot think of anything that has gotten better (OK, besides my cognition the last couple of days).
Could I really be having relapses every six weeks or so? And not really healing from them?
It sounds like this doctor is being very thorough, The chances of having NMO are much less than MS; it isn't as common as MS and tends to be seen more often in patients with Japanese heritage than other backgrounds, though as I type this sentence I realize I'm making a total assumption that you're not Japanese. And it is certainly seen in patients of other backgrounds, just not as often as MS is.
I had the NMO-IgG testing done well over a year past my RRMS dx and well into my DMD treatment. It was not considered during the initial differential diagnosis. My neuro became concerned after a bout of O.N. that, together with my several previously existing spinal lesions, lack of brain lesions (only one, on brain stem), plus lack of O-bands in my CSF (LP was done pre-RRMS dx), possibly pointed more to NMO than MS. Test came back neg, and even though there's a high false neg rate with this test,both he and my neuro-ophtha were comfortable with the orginal dx. My relapses did diminish in frequency, assumption is that Copaxone appears to be working, and if it was NMO this med would not be helping.
I don't recall ever hearing about copper deficiency as a possible MS mimic; that is interesting. Any idea what the cause of that might be?
While you're waiting for the test results, if your symptoms worsen would he be willing to order a course of IVSM, if he hasn't already done so? I ask because I recall my NMO-IgG test took a while to come back; testing was done at the Mayo Clinic in Rochester, Minn. and returned to my neuro in Canada; maybe it took longer than had I lived in the U.S.
Going back to the time of my initial dx, I was started on 5 days of IVSM a month or so before my official dx, as the on-call neuros were 99% positive it was MS, and felt better to treat the flare and it turn out not to be MS, than delay treatment and it ends up being MS. My symptoms at the time were pretty severe which I guess was the basis of their judgement call. Something to consider while you wait, and hopefully that won't be for too much longer.
I had the NMO-IgG testing done well over a year past my RRMS dx and well into my DMD treatment. It was not considered during the initial differential diagnosis. My neuro became concerned after a bout of O.N. that, together with my several previously existing spinal lesions, lack of brain lesions (only one, on brain stem), plus lack of O-bands in my CSF (LP was done pre-RRMS dx), possibly pointed more to NMO than MS. Test came back neg, and even though there's a high false neg rate with this test,both he and my neuro-ophtha were comfortable with the orginal dx. My relapses did diminish in frequency, assumption is that Copaxone appears to be working, and if it was NMO this med would not be helping.
I don't recall ever hearing about copper deficiency as a possible MS mimic; that is interesting. Any idea what the cause of that might be?
While you're waiting for the test results, if your symptoms worsen would he be willing to order a course of IVSM, if he hasn't already done so? I ask because I recall my NMO-IgG test took a while to come back; testing was done at the Mayo Clinic in Rochester, Minn. and returned to my neuro in Canada; maybe it took longer than had I lived in the U.S.
Going back to the time of my initial dx, I was started on 5 days of IVSM a month or so before my official dx, as the on-call neuros were 99% positive it was MS, and felt better to treat the flare and it turn out not to be MS, than delay treatment and it ends up being MS. My symptoms at the time were pretty severe which I guess was the basis of their judgement call. Something to consider while you wait, and hopefully that won't be for too much longer.
If I'm remembering correctly. Doublevision thought that she perhaps had Devic's. Its a scarey thought but pretty rare. See, having MS - it could always be something worse! :-)
One test at a time,
Lulu
One test at a time,
Lulu
NMO and copper are pretty standard tests these days. I am surprised as you that these hadn't been ruled out prior to going to the new neuro. You are right that NMO is worse than MS. A friend of mine went through that agony until her results came back negative. I think I have had my checked 3 times because the neuro said that it is possible it can be negative in the beginning.
This is a good reminder for all of us if we haven't been checked for NMO or copper, then ask the doctor about it.
Julie
This is a good reminder for all of us if we haven't been checked for NMO or copper, then ask the doctor about it.
Julie
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