Can't get MRI until Jan, but worried out Pernicious Anemia
Posted: Sat Sep 24, 2016 3:30 pm
Hi,
My name is Ashling and I'm 36. First off, I want to apologise for the length of this post. I have a very specific question at the end that I don’t feel like I can ask without properly setting up the situation.
In February of this year (2016), I suddenly noticed one night at fencing class that I had a swollen left ankle and my foot hurt. I googled a bunch and tib-post tendonitis seemed the most likely cause, so I braced it and stopped doing impact sports and weight lifting. I started getting tingling in the toes of both feet.
In April I saw my endochrinolgoist who treats me for Hashimoto's thyroiditis, reactive glycemia, and pernicious anemia (remember that last one, I sure didn’t, but it’ll come back up later). I told him about the tingling, but he said all my numbers were fine, so it wasn’t peripheral neuropathy, and it was probably orthopedic.
I got an appointment to see a sports medicine orthopedist (since I figured the ankle which wasn’t healing was a sports injury). He said yes I had tib-post tendonitis and I should continue resting it because tendons are slow to heal. I did. And the tingling spread up my legs (worse in the left).
Then around June I started to have pain in my forearms (the meaty part below the elbow) that I thought was tendonitis so I tried to rest my arms too. (I type a lot and am always on my phone). It bounced back and forth as to which was the bad arm, but eventually around late July it settled on (mostly) the back of my left arm. From there it moved up into the left bicep, still being a tweaky kind of sensation. I started to get tingling and a sensation of false swelling that ran predominantly down the back of the left arm and occasionally the right. I called my endocrinologist back but he blew me off and said it was probably carpal tunnel.
I called a family doctor (had to get a new one because it had been so long since I’d seen my previous one that she had a 3-4 month wait). So I saw the new GP and told him my symptoms and he just threw up his hands (literally) and asked me what I wanted him to do. Stymmied, I asked for a referral to someone who dealt with whatever he imagined my issue might be because all I knew was every doctor I talked to said “not my problem.” He bounced me back to the sports med ortho because ?????
Back at the sports med ortho in early August I think (might have been very late July) I give him a laundry list of what is tingling now. I was actually scheduled to see his nurse practicioner but I guess the list of symptoms prompted him to come in personally. He said it sounded like fibromyalgia and referred me to a neurologist. Cue another 2 month wait.
During the two month wait, I stop having a period. Definitely not pregnant and it’s never late. I don’t quite know why but one day I decided to pop a bunch of B12 sublingual tabs (and I mean a bunch). My period comes back the next day and I’m a little less “off” feeling. I keep taking them but as the weeks drag on I get so… incredibly… tired. There’s a knot in my left trapezius that never loosens up no matter what I do. It’s right under the weirdest buzzy nerve thing. My left arm and leg start to feel weaker but when I test them (squats, push ups, swimming, bicep curls, tricep extensions, yoga poses) they never are. I go to a convention and walk 5-10 miles a day for 4 days. Things feel weird but I’m getting used to it and standing and walking seems to reduce all the weird feelings, just very exhausting.
We return home from the vacation. I start having panic attacks and crying a lot. My hands shake. I meditate a lot. It helps, but I just keep feeling worse and worse. The nerves that were tingling start to really “fry.” It actually kind of hurts. It felt like a TENS unit on a moderate high setting. One day would be bad, the next not as bad. I started getting night sweats (just 3 times) and felt constantly on high alert. I started getting muscle fasciculations (presumably from the off-the-chain anxiety). The back of my head went sort of-numb (up along how the trapezius connects to the skull) and the left side of my face got worse. I couldn’t concentrate and had trouble remembering things and formulating thoughts. I started to have night sweats and nightmares. By this point, the (I think) anxiety was worse than what was happening.
Finally on the 20th of September, I saw the neurologist who asked me a ton of questions and did some tests with little hammers and tuning forks and things. He looked in my right eye a lot. He never told me he found anything wrong with any of the tests, just that I passed them all, so it must be central nervous system. Through this whole thing, the sensations have been like a layer between other sensations, so yeah I can definitely feel vibration, temperature, etc. through the paraesthesias (however they choose to manifest).
Anyway, he says I need to be tested for MS because of the weirdness of the symptoms and maybe because of their preference for being worse on the left. He seemed pretty convinced. I can’t do that until January when my insurance will go into effect. In the meantime, because I’d already been diagnosed with pernicious anemia, he wrote me a new script for the injectable kind and asked me about an intrinsic factor that if I was ever told about, I promptly forgot because when they first diagnosed it I could remember basically nothing. (Call me a dummy, but I never once bothered to actually look up pernicious anemia until AFTER he wrote me this new B12 script. I was told several years ago by my endocrinologist to not worry about the injections anymore so I didn’t. I feel like that may have been a HUGE mistake, but I was 20-something and too tired to care as long as they fixed what was wrong).
That night (the 20th), I injected 1000mcg of cyanocobalamin into my arm muscle. Within 2-3 hours, I was feeling unbelievably better. The knot in my trapezius that had been there for a month just dissolved. Within 24 hours the weird nerve “burn/buzz/fry” was just a ghost image of a sensation. I had another panic attack last night, but when I woke up this morning, there were no new symptoms and the old ones were even more ghostly. So far today I’ve had no further anxiety attacks and haven't needed a nap. It’s four days after that shot now. I’m sore in the spots where the weird nerve stuff happened, but it feels a bit like the soreness you have after the flu. It’s like someone shut off whatever was sort of electrocuting me.
Anyway, what I’m wondering, is should I push for more B12, like a larger loading dose because maybe - just maybe - this isn’t MS? He’s only giving me 1000mcg/month and I’ve now read up that if you do get low you need that much about every other day for a week or something and I can’t get a clear read on whether serum B12 levels (supposedly “good” in April but I was given no number) can even be trusted. I wrote the neurologist a note asking if B12 can work that quickly in a deficient person, but he kind of brushed me off with an “anything’s possible.”
Here’s the thing. This whole time, I’ve not been falling down (and I do balancing yoga poses about everyday); I don’t have trouble swallowing; I don’t have bladder problems, and I can walk just fine as far as I can tell. My speech isn’t slurred. I haven’t noticed any vision changes and I saw my opthomologist in July who did all the usual glaucoma tests, looked into my eyes, and did a visual field test that I passed perfectly. I’m assuming I’d notice whatever it is optic neuritis is suposed to do and I definitely haven’t gone blind in either eye. I don’t think I have Lhermitte’s sign (again, I’m assuming that something peculiar or particular happens when you put your head forward. My vertebrae occassionaly pop, but that’s all.) Heat doesn’t bother me. I live in Florida and regularly go for 15-20 walks when it’s 90-something outside and I quite like the 104 degree hottub at my gym.
I guess it’s weird for PA to be worse on one side, and I sound like I’m trying to convince myself I don’t have MS - and maybe I am - but after reading up on MS and also finally bothering to read up on pernicious anemia, I’m not so sure about this possible MS dx, especially after that initial shot and very sudden abatement of symptoms. The neurologist doesn’t want to do anything until we have insurance in January and get the MRI, (wouldn’t even quote us the out-of-pocket costs), but I’m a little worried that if this IS pernicious anemia it could permanently mess me up if I don’t start twisting some arms kind of nowish?
Anway, the reason I’m writing this (I apologise again) extremely long post, is to ask those of you who have gone through an MS attack and remission, does it remit quite fast with the main residual being a bit of irritated skin and vague soreness?
Thank you for reading. Peace be with you,
Ashling
My name is Ashling and I'm 36. First off, I want to apologise for the length of this post. I have a very specific question at the end that I don’t feel like I can ask without properly setting up the situation.
In February of this year (2016), I suddenly noticed one night at fencing class that I had a swollen left ankle and my foot hurt. I googled a bunch and tib-post tendonitis seemed the most likely cause, so I braced it and stopped doing impact sports and weight lifting. I started getting tingling in the toes of both feet.
In April I saw my endochrinolgoist who treats me for Hashimoto's thyroiditis, reactive glycemia, and pernicious anemia (remember that last one, I sure didn’t, but it’ll come back up later). I told him about the tingling, but he said all my numbers were fine, so it wasn’t peripheral neuropathy, and it was probably orthopedic.
I got an appointment to see a sports medicine orthopedist (since I figured the ankle which wasn’t healing was a sports injury). He said yes I had tib-post tendonitis and I should continue resting it because tendons are slow to heal. I did. And the tingling spread up my legs (worse in the left).
Then around June I started to have pain in my forearms (the meaty part below the elbow) that I thought was tendonitis so I tried to rest my arms too. (I type a lot and am always on my phone). It bounced back and forth as to which was the bad arm, but eventually around late July it settled on (mostly) the back of my left arm. From there it moved up into the left bicep, still being a tweaky kind of sensation. I started to get tingling and a sensation of false swelling that ran predominantly down the back of the left arm and occasionally the right. I called my endocrinologist back but he blew me off and said it was probably carpal tunnel.
I called a family doctor (had to get a new one because it had been so long since I’d seen my previous one that she had a 3-4 month wait). So I saw the new GP and told him my symptoms and he just threw up his hands (literally) and asked me what I wanted him to do. Stymmied, I asked for a referral to someone who dealt with whatever he imagined my issue might be because all I knew was every doctor I talked to said “not my problem.” He bounced me back to the sports med ortho because ?????
Back at the sports med ortho in early August I think (might have been very late July) I give him a laundry list of what is tingling now. I was actually scheduled to see his nurse practicioner but I guess the list of symptoms prompted him to come in personally. He said it sounded like fibromyalgia and referred me to a neurologist. Cue another 2 month wait.
During the two month wait, I stop having a period. Definitely not pregnant and it’s never late. I don’t quite know why but one day I decided to pop a bunch of B12 sublingual tabs (and I mean a bunch). My period comes back the next day and I’m a little less “off” feeling. I keep taking them but as the weeks drag on I get so… incredibly… tired. There’s a knot in my left trapezius that never loosens up no matter what I do. It’s right under the weirdest buzzy nerve thing. My left arm and leg start to feel weaker but when I test them (squats, push ups, swimming, bicep curls, tricep extensions, yoga poses) they never are. I go to a convention and walk 5-10 miles a day for 4 days. Things feel weird but I’m getting used to it and standing and walking seems to reduce all the weird feelings, just very exhausting.
We return home from the vacation. I start having panic attacks and crying a lot. My hands shake. I meditate a lot. It helps, but I just keep feeling worse and worse. The nerves that were tingling start to really “fry.” It actually kind of hurts. It felt like a TENS unit on a moderate high setting. One day would be bad, the next not as bad. I started getting night sweats (just 3 times) and felt constantly on high alert. I started getting muscle fasciculations (presumably from the off-the-chain anxiety). The back of my head went sort of-numb (up along how the trapezius connects to the skull) and the left side of my face got worse. I couldn’t concentrate and had trouble remembering things and formulating thoughts. I started to have night sweats and nightmares. By this point, the (I think) anxiety was worse than what was happening.
Finally on the 20th of September, I saw the neurologist who asked me a ton of questions and did some tests with little hammers and tuning forks and things. He looked in my right eye a lot. He never told me he found anything wrong with any of the tests, just that I passed them all, so it must be central nervous system. Through this whole thing, the sensations have been like a layer between other sensations, so yeah I can definitely feel vibration, temperature, etc. through the paraesthesias (however they choose to manifest).
Anyway, he says I need to be tested for MS because of the weirdness of the symptoms and maybe because of their preference for being worse on the left. He seemed pretty convinced. I can’t do that until January when my insurance will go into effect. In the meantime, because I’d already been diagnosed with pernicious anemia, he wrote me a new script for the injectable kind and asked me about an intrinsic factor that if I was ever told about, I promptly forgot because when they first diagnosed it I could remember basically nothing. (Call me a dummy, but I never once bothered to actually look up pernicious anemia until AFTER he wrote me this new B12 script. I was told several years ago by my endocrinologist to not worry about the injections anymore so I didn’t. I feel like that may have been a HUGE mistake, but I was 20-something and too tired to care as long as they fixed what was wrong).
That night (the 20th), I injected 1000mcg of cyanocobalamin into my arm muscle. Within 2-3 hours, I was feeling unbelievably better. The knot in my trapezius that had been there for a month just dissolved. Within 24 hours the weird nerve “burn/buzz/fry” was just a ghost image of a sensation. I had another panic attack last night, but when I woke up this morning, there were no new symptoms and the old ones were even more ghostly. So far today I’ve had no further anxiety attacks and haven't needed a nap. It’s four days after that shot now. I’m sore in the spots where the weird nerve stuff happened, but it feels a bit like the soreness you have after the flu. It’s like someone shut off whatever was sort of electrocuting me.
Anyway, what I’m wondering, is should I push for more B12, like a larger loading dose because maybe - just maybe - this isn’t MS? He’s only giving me 1000mcg/month and I’ve now read up that if you do get low you need that much about every other day for a week or something and I can’t get a clear read on whether serum B12 levels (supposedly “good” in April but I was given no number) can even be trusted. I wrote the neurologist a note asking if B12 can work that quickly in a deficient person, but he kind of brushed me off with an “anything’s possible.”
Here’s the thing. This whole time, I’ve not been falling down (and I do balancing yoga poses about everyday); I don’t have trouble swallowing; I don’t have bladder problems, and I can walk just fine as far as I can tell. My speech isn’t slurred. I haven’t noticed any vision changes and I saw my opthomologist in July who did all the usual glaucoma tests, looked into my eyes, and did a visual field test that I passed perfectly. I’m assuming I’d notice whatever it is optic neuritis is suposed to do and I definitely haven’t gone blind in either eye. I don’t think I have Lhermitte’s sign (again, I’m assuming that something peculiar or particular happens when you put your head forward. My vertebrae occassionaly pop, but that’s all.) Heat doesn’t bother me. I live in Florida and regularly go for 15-20 walks when it’s 90-something outside and I quite like the 104 degree hottub at my gym.
I guess it’s weird for PA to be worse on one side, and I sound like I’m trying to convince myself I don’t have MS - and maybe I am - but after reading up on MS and also finally bothering to read up on pernicious anemia, I’m not so sure about this possible MS dx, especially after that initial shot and very sudden abatement of symptoms. The neurologist doesn’t want to do anything until we have insurance in January and get the MRI, (wouldn’t even quote us the out-of-pocket costs), but I’m a little worried that if this IS pernicious anemia it could permanently mess me up if I don’t start twisting some arms kind of nowish?
Anway, the reason I’m writing this (I apologise again) extremely long post, is to ask those of you who have gone through an MS attack and remission, does it remit quite fast with the main residual being a bit of irritated skin and vague soreness?
Thank you for reading. Peace be with you,
Ashling
) and then I was seen by the endochrinologist who eventually took me off of B12 injections and potassium. He tests me every year for CBC, cholesterol, blood sugar, and serum B12 and always says it's "good" but I've never seen any numbers and it hadn't occurred to me to ask. My white count is low but he says not to worry about it. He's never mentioned homocysteine, folate, or methylmalonic acid. I'm going to request copies of all my medical records from every doctor I can still find so I can try to be my own advocate and really understand my own diagnoses.
). I feel even better - mentally back to normal and even the sort-of after-image of the peripheral neuropathy is gone along with most of the incredibly annoying fasciculations. At least this way I'll survive until January when they do more tests, though unfortunately, I've probably invalidated all but the intrinsic factor test and the MRIs for lesions.