The waiting game
Posted: Thu May 29, 2014 2:17 pm
So, this all started back in January.
I first noticed some odd sensations on the left side of my face. At times when it should feel hot (such as a car's defrosters hitting it) it would feel cold. If I rolled down the window and let the cold air come in, it would feel hot (like a lighted candle being held near my face). I didn't think too much about it.
Then one morning I have a memory that it felt weird when I brushed my teeth and breakfast didn't taste right. Again I didn't think much about it (my brain really does not function well before noon). As the morning goes on I notice my face is feeling odd, kind of numb like I've been out in the cold, but I hadn't and when I touched my face it felt warm enough. So, I finally get a chance to eat lunch and I notice I absolutely cannot taste anything. I can smell it just fine, just no taste. Its hot soup, but I cannot feel the heat on my mouth or lips.
I mention it to my husband and idly between other activities we google the symptoms. The top items that come up are stroke or something else that I can't remember at the moment. I slowly start to panic (we'd recently had an acquaintance who had a stoke) and end up leaving work to head to the ER.
Funny enough, when a 40 something woman walks into an ER saying that one side of her face has gone numb, she jumps straight to the head of the line.
I gave samples of just about every body fluid its possible for someone to give. They gave me an EKG, and MRI, and whole batteries of other tests.
Five hours later I'm sitting there bored and scared (its amazing how those two things can combine) when the doctor walks in. EKG is fine. No sign of stroke in the MRI or brain tumors. (*whew*)
"However, there are two lesions near the base of your brain. You have MS. Here's a referral to a neurologist." My jaw drops and I stare at him uncomprehendingly.
Fast forward a couple of weeks and my face is still numb and I still can't taste anything. I'm also a nervous wreck. I finally get in to see the neurologist and he says he doesn't think its MS. (*whew*) He mentions vitamin deficiencies like B12 but also wants to schedule me for a spinal tap (just to verify there isn't a problem there). So I give a bunch more blood and walk away thinking that a vitamin deficiency is way more preferable to MS.
So time passes again and I read up on all sorts of things that can happen with vitamin deficiencies. Some of those are down right scary. The feeling has since returned to my face and I can taste again. Now I get periodic bouts where the same area of my face would tingle really strongly, I would get a metallic taste in my mouth, and for a brief moment of time I would feel like someone has turned gravity down. This would last for a minute or two and then stop. My right hand seems to want to fall asleep easily and its a bugger to get the feeling back, sometimes taking 5-10 minutes of moving my arm around, etc.
There's an issue scheduling the spinal tap, so I go back to the doctor before that happens. The only thing he sees is that my B12 is on the low end of the normal range. However, my Homocysteine level is also on the low end of normal (and its normally high with a B12 deficiency). Since I've already started taking supplements, he says we'll keep an eye on it and straightens out the scheduling mess with the spinal tap.
So I have the spinal tap. The facial stuff has eased off and now I just periodically get a tingling sensation on my lip. i am now, however, also getting tingling sensations in my lower legs and feet. This comes and goes, though when it comes it seems to last for a few days at a time. I am also exhausted. Not sleepy exhausted, but bone weary, physically worn out, weak as a baby, like someone has turned up gravity to 3 times normal tired. At times its even too much effort to sit in a chair. I wonder if this isn't B12 anyway and consider asking him to check my levels again to see what they are doing.
A few more weeks and I'm back at the neurologist. The spinal tap came back positive for Oligoclonal Bands. Specifically "greater than 5 well defined gamma restriction bands that are not present in the patient's corresponding serum sample". Those words have been burned into my brain.
So we schedule another MRI. This one also including the c-spine both with and without contrast. He also schedules a second spinal tap to assure there wasn't a false positive.
I have since gotten the results back from the spinal tap. They are the same as before.
Positive for Oligoclonal bands.
Neuromyelitis Optica IgG is negative (rules out Devic's disease).
IgG Index is high.
Something is definitely going on in my central nervous system.
So here I sit until I go back to the neurologist on Tuesday. I've been dealing with everything pretty well, but now that its close to my appointment time, I find my anxiety levels are rising. I've also been driving myself crazy (my husband wants to know how we could tell the difference) paying attention to every little thing my body is doing and wondering what may be causing it.
I'm still so very tired. I used to love to go for evening walks. I'd do 2-3 miles and enjoy the quiet evening. Now I drag myself along making bargains to myself just a little bit further then you can turn around and go home. The muscles on my thighs are so tight they ache and little I do seems to help. Face has been behaving itself, though the tingling in my feet and lower legs is still there.
I have no idea if this is MS, though there are enough signs to make it a possibility. I don't want a MS diagnosis, though at this point I think I'll be relieved just knowing what is happening.
I first noticed some odd sensations on the left side of my face. At times when it should feel hot (such as a car's defrosters hitting it) it would feel cold. If I rolled down the window and let the cold air come in, it would feel hot (like a lighted candle being held near my face). I didn't think too much about it.
Then one morning I have a memory that it felt weird when I brushed my teeth and breakfast didn't taste right. Again I didn't think much about it (my brain really does not function well before noon). As the morning goes on I notice my face is feeling odd, kind of numb like I've been out in the cold, but I hadn't and when I touched my face it felt warm enough. So, I finally get a chance to eat lunch and I notice I absolutely cannot taste anything. I can smell it just fine, just no taste. Its hot soup, but I cannot feel the heat on my mouth or lips.
I mention it to my husband and idly between other activities we google the symptoms. The top items that come up are stroke or something else that I can't remember at the moment. I slowly start to panic (we'd recently had an acquaintance who had a stoke) and end up leaving work to head to the ER.
Funny enough, when a 40 something woman walks into an ER saying that one side of her face has gone numb, she jumps straight to the head of the line.
I gave samples of just about every body fluid its possible for someone to give. They gave me an EKG, and MRI, and whole batteries of other tests.
Five hours later I'm sitting there bored and scared (its amazing how those two things can combine) when the doctor walks in. EKG is fine. No sign of stroke in the MRI or brain tumors. (*whew*)
"However, there are two lesions near the base of your brain. You have MS. Here's a referral to a neurologist." My jaw drops and I stare at him uncomprehendingly.
Fast forward a couple of weeks and my face is still numb and I still can't taste anything. I'm also a nervous wreck. I finally get in to see the neurologist and he says he doesn't think its MS. (*whew*) He mentions vitamin deficiencies like B12 but also wants to schedule me for a spinal tap (just to verify there isn't a problem there). So I give a bunch more blood and walk away thinking that a vitamin deficiency is way more preferable to MS.
So time passes again and I read up on all sorts of things that can happen with vitamin deficiencies. Some of those are down right scary. The feeling has since returned to my face and I can taste again. Now I get periodic bouts where the same area of my face would tingle really strongly, I would get a metallic taste in my mouth, and for a brief moment of time I would feel like someone has turned gravity down. This would last for a minute or two and then stop. My right hand seems to want to fall asleep easily and its a bugger to get the feeling back, sometimes taking 5-10 minutes of moving my arm around, etc.
There's an issue scheduling the spinal tap, so I go back to the doctor before that happens. The only thing he sees is that my B12 is on the low end of the normal range. However, my Homocysteine level is also on the low end of normal (and its normally high with a B12 deficiency). Since I've already started taking supplements, he says we'll keep an eye on it and straightens out the scheduling mess with the spinal tap.
So I have the spinal tap. The facial stuff has eased off and now I just periodically get a tingling sensation on my lip. i am now, however, also getting tingling sensations in my lower legs and feet. This comes and goes, though when it comes it seems to last for a few days at a time. I am also exhausted. Not sleepy exhausted, but bone weary, physically worn out, weak as a baby, like someone has turned up gravity to 3 times normal tired. At times its even too much effort to sit in a chair. I wonder if this isn't B12 anyway and consider asking him to check my levels again to see what they are doing.
A few more weeks and I'm back at the neurologist. The spinal tap came back positive for Oligoclonal Bands. Specifically "greater than 5 well defined gamma restriction bands that are not present in the patient's corresponding serum sample". Those words have been burned into my brain.
So we schedule another MRI. This one also including the c-spine both with and without contrast. He also schedules a second spinal tap to assure there wasn't a false positive.
I have since gotten the results back from the spinal tap. They are the same as before.
Positive for Oligoclonal bands.
Neuromyelitis Optica IgG is negative (rules out Devic's disease).
IgG Index is high.
Something is definitely going on in my central nervous system.
So here I sit until I go back to the neurologist on Tuesday. I've been dealing with everything pretty well, but now that its close to my appointment time, I find my anxiety levels are rising. I've also been driving myself crazy (my husband wants to know how we could tell the difference) paying attention to every little thing my body is doing and wondering what may be causing it.
I'm still so very tired. I used to love to go for evening walks. I'd do 2-3 miles and enjoy the quiet evening. Now I drag myself along making bargains to myself just a little bit further then you can turn around and go home. The muscles on my thighs are so tight they ache and little I do seems to help. Face has been behaving itself, though the tingling in my feet and lower legs is still there.
I have no idea if this is MS, though there are enough signs to make it a possibility. I don't want a MS diagnosis, though at this point I think I'll be relieved just knowing what is happening.