evilxsystems
New member
- Joined
- Aug 20, 2013
- Messages
- 5
- Reason
- Learn about ALS
- Country
- US
- State
- wa
- City
- seattle
Hi all-
After reading the stickies it appears that you guys have to deal with a lot of people in my situation and I apologize in advance for what maybe simply anxiety or lupus or whatever is going on with me.
I'm male, 38, been fairly healthy all my life. Had problems with seasonal allergies since my teens, but other than a few ER visits for kidney stones no major medical problems.
My issues started last May (2012) when I suddenly started having trouble breathing and numbness on the left side of my body. Concerned about a possible heart issue I went to the ER. During my EKG they detected ventricular tachycardia and I was admitted to the ICU. I was in the icu for a day and the cardiologist diagnosed me with an arrhythmia. I'd had similar feeling in my heart before, and hadn't thought much about it. However even though they put me on massive doses of beta blockers to slow my heart, I continued to have trouble breathing while I was in the hospital for 2 days, although my oxygen levels were fine and my chest xray only showed slight irregularities. I was released from the hospital, but three days later, was back in the ER because of trouble breathing. They took another chest xray which was normal, as was my EKG (other than the arrhythmia) and released me. Over the next two months my numbness on the left side of my body worsened and I began having trouble walking. In July I began having trouble breathing again and went back to the ER. They decided to do a brain MRI, which was normal. They referred me to a neurologist and an allergist to check for possible asthma or neurological cause for my problems. The allergist found no signs of asthma. Neurological exam detected weakness and some loss of sensation on my left side. I was given another MRI to check for spinal problems and for signs of MS and blood tests for lupus. MRI was normal, blood test showed elevated ANA 1:160. My neurologist suspected Lupus and sent me to a rheumatologist, where they performed a gazillion antibody tests on me. Other than my elevated ANA level no other anomalies were found. My rheumatologist thought I may have undifferentiated connective tissue disease but was not sure. Getting increasingly frustrated with my difficulties walking and feeling I was getting increasingly worse I began combing the medical literature(I'm a medical scientists by profession) for case reports that might show similarities to what was happening with me. I found a case report of someone in new Zealand with vitamin B12 deficiency that shared most of my symptoms. That night I left the lab and went to Fred Meyer and bought some sublingual megadoses of B12 and took three of them. The next morning when I woke up my numbness was completely gone, my eyes worked better, I felt stronger, I felt like a new person. Three days later I saw my neurologist. My exam showed that I still had weakness but the sensory problems were gone, I told him about the b12 and he told me to keep taking it and ordered me some physical therapy. After a month of physical therapy, my neurological exam showed no weakness. I thought I'd been cured. My rheumatologist checked my ANA and it had fallen to 1:80.
I thought this had been the end of it, however this May (2013) I started having problems with numbness again and a lot of muscle twitches in my legs and stomach and taking B12 wasnt helping them, however they were much more sporadic than previously. I returned to my neurologist and my exam again showed weakness on my left side. He suggested I have a spinal tap to check for MS. This was done in May and came back normal (although I had a two week long spinal tap headache from hell :/). They rechecked my ANA and it was back up to 1:160. My neurologist sent me back to the rheumatologist a few weeks ago and he did several more tests, all of the tests that have come back are normal. Thinking that it might be lupus, I started taking a lot of ibuprofen. This has helped a lot with my feelings of weakness and trouble breathing. My neurological exam last week found that my weakness was gone again.
My neurologist has not tested me for motor neuron disease, primarily because he felt my presentation wasnt consistent, however my trouble breathing is worrying him and he is currently testing me for myasthenia gravis and prescribed me pyridostigmine. I took it for a day instead of ibuprofen and felt absolute shit, and went back to the ibuprofen. if my myasthenia gravis test comes back positive I'll give it another go but as for right now I'm just taking ibuprofen, but I feel like its not working as well as it has been and all day I've been tired and having trouble breathing....
I guess I'm posting this here because I'm worried about ALS. I know my symptoms arent consistent with ALS, ALS doesnt get better like my weakness did in my case, doesnt have the sensory issues I had, but my neurologist brought up doing an EMG on me during my last visit and it's gotten me concerned. I'm also worried I'm just gonna stop breathing in the middle of the night...I don't know if that can happen with lupus or myasthenia gravis or UCTD...I don't even know if its worth going to the ER with this...do hospitals have on call neurologists or rheumatologists? Anyway I feel guilty dumping this on a community of people with a incurable disease, but it seems you've all run the medical gauntlet getting to where you are and I'd appreciate any advice in getting myself sorted or for any doctors in the Pacific Northwest.
best wishes and many thanks
jason
After reading the stickies it appears that you guys have to deal with a lot of people in my situation and I apologize in advance for what maybe simply anxiety or lupus or whatever is going on with me.
I'm male, 38, been fairly healthy all my life. Had problems with seasonal allergies since my teens, but other than a few ER visits for kidney stones no major medical problems.
My issues started last May (2012) when I suddenly started having trouble breathing and numbness on the left side of my body. Concerned about a possible heart issue I went to the ER. During my EKG they detected ventricular tachycardia and I was admitted to the ICU. I was in the icu for a day and the cardiologist diagnosed me with an arrhythmia. I'd had similar feeling in my heart before, and hadn't thought much about it. However even though they put me on massive doses of beta blockers to slow my heart, I continued to have trouble breathing while I was in the hospital for 2 days, although my oxygen levels were fine and my chest xray only showed slight irregularities. I was released from the hospital, but three days later, was back in the ER because of trouble breathing. They took another chest xray which was normal, as was my EKG (other than the arrhythmia) and released me. Over the next two months my numbness on the left side of my body worsened and I began having trouble walking. In July I began having trouble breathing again and went back to the ER. They decided to do a brain MRI, which was normal. They referred me to a neurologist and an allergist to check for possible asthma or neurological cause for my problems. The allergist found no signs of asthma. Neurological exam detected weakness and some loss of sensation on my left side. I was given another MRI to check for spinal problems and for signs of MS and blood tests for lupus. MRI was normal, blood test showed elevated ANA 1:160. My neurologist suspected Lupus and sent me to a rheumatologist, where they performed a gazillion antibody tests on me. Other than my elevated ANA level no other anomalies were found. My rheumatologist thought I may have undifferentiated connective tissue disease but was not sure. Getting increasingly frustrated with my difficulties walking and feeling I was getting increasingly worse I began combing the medical literature(I'm a medical scientists by profession) for case reports that might show similarities to what was happening with me. I found a case report of someone in new Zealand with vitamin B12 deficiency that shared most of my symptoms. That night I left the lab and went to Fred Meyer and bought some sublingual megadoses of B12 and took three of them. The next morning when I woke up my numbness was completely gone, my eyes worked better, I felt stronger, I felt like a new person. Three days later I saw my neurologist. My exam showed that I still had weakness but the sensory problems were gone, I told him about the b12 and he told me to keep taking it and ordered me some physical therapy. After a month of physical therapy, my neurological exam showed no weakness. I thought I'd been cured. My rheumatologist checked my ANA and it had fallen to 1:80.
I thought this had been the end of it, however this May (2013) I started having problems with numbness again and a lot of muscle twitches in my legs and stomach and taking B12 wasnt helping them, however they were much more sporadic than previously. I returned to my neurologist and my exam again showed weakness on my left side. He suggested I have a spinal tap to check for MS. This was done in May and came back normal (although I had a two week long spinal tap headache from hell :/). They rechecked my ANA and it was back up to 1:160. My neurologist sent me back to the rheumatologist a few weeks ago and he did several more tests, all of the tests that have come back are normal. Thinking that it might be lupus, I started taking a lot of ibuprofen. This has helped a lot with my feelings of weakness and trouble breathing. My neurological exam last week found that my weakness was gone again.
My neurologist has not tested me for motor neuron disease, primarily because he felt my presentation wasnt consistent, however my trouble breathing is worrying him and he is currently testing me for myasthenia gravis and prescribed me pyridostigmine. I took it for a day instead of ibuprofen and felt absolute shit, and went back to the ibuprofen. if my myasthenia gravis test comes back positive I'll give it another go but as for right now I'm just taking ibuprofen, but I feel like its not working as well as it has been and all day I've been tired and having trouble breathing....
I guess I'm posting this here because I'm worried about ALS. I know my symptoms arent consistent with ALS, ALS doesnt get better like my weakness did in my case, doesnt have the sensory issues I had, but my neurologist brought up doing an EMG on me during my last visit and it's gotten me concerned. I'm also worried I'm just gonna stop breathing in the middle of the night...I don't know if that can happen with lupus or myasthenia gravis or UCTD...I don't even know if its worth going to the ER with this...do hospitals have on call neurologists or rheumatologists? Anyway I feel guilty dumping this on a community of people with a incurable disease, but it seems you've all run the medical gauntlet getting to where you are and I'd appreciate any advice in getting myself sorted or for any doctors in the Pacific Northwest.
best wishes and many thanks
jason
