April E
Member
- Joined
- May 18, 2018
- Messages
- 25
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CO
- City
- Longmont
First of all, thank you to everyone taking the time to read this. I appreciate and respect your knowledge and look forward to your feedback.
I'm not sure where to start. So I will pick last summer, August I believe it was. I got on my bike and couldn't ride for more than a couple of blocks. My legs turned to rubber bands and I had to dismount and wobbily push the bike home. I asked my husband to check it for me, as I assumed there was a low tire or stuck break. He didn't find much wrong, aired up the tire a bit, tinkered with the break...I got back on and was excited for the first block, and then the same thing happened. This was such a profoundly disturbing sensation that I haven't gotten on my bike since. Shortly after that, I started getting cramping in my right foot any time I tried to move my toes up or down. I have also been getting strange, intensely painful cramps up under my chin if I yawn too forcefully, and some mild cramping in my right hand and left ribcage. In the last few months I've developed twitching. It is mostly in my lower legs from calf to ankle, but also occasionally in left thigh and left buttock. Sometimes the left ribcage twitches as do both of my elbows. This twitching never stops. Then, what really got my attention and sent me in a blind panic to my PCP was when I noticed some atrophy between the thumb and forefinger of my right hand. I can also see tiny twitches in the atrophied area which I cannot feel. I have lost 40 pounds since February, but I was trying to adopt a healthier diet during that time, and now, this recent onset of anxiety has pretty much killed my appetite.
The PCP referred me to a Neurologist. I had a CMP which was all normal. I've had a MRI of the brain which was negative, and EMGs of both arms, both legs, and under my chin. I received a phone call from the nurse who kindly informed me that my upper EMGs showed mild carpal tunnel syndrome on the right side and there was nothing to indicate ALS. A week later I received a call about the lower EMGs, (they were done a week apart) simply stating they were normal. My follow up with the neurologist is Monday.
During my initial appointment, before the tests, the neurologist made a comment along the lines of, "unfortunately, even if the EMGs are negative, we can't be sure".
So, while I want to be reassured that all is well, I'm very worried since he did say that. Just FYI, I was recently diagnosed with Hashimoto's antibodies, but my TSH and free T-4 are both normal. I have an appointment with an endocrinologist next Thursday. I found out in 2016 that I had a positive Lyme titer in 2014 while in the ER for a very slow, irregular heart beat. I was hospitalized overnight and discharged before the results were available, I don't recall knowing they were testing me for Lyme, and somehow I was never notified. I did have a history of a tick and a rash that in my ignorance, I ignored at the time. So, in 2016 my PCP gave me a10 day course of Doxycycline, which I've since learned was not nearly enough, considering the amount of time that had elapsed. My PCP referred me to an Infectious Disease doctor at the same time as he referred me to the neurologist, but he hasn't returned my calls.
Do you have any recommendations as to what I should ask the neurologist on Monday? I work third shift and will be going directly from work to his office, so my brain will be very tired. I will need to write down any pertinent questions.
Thank you to anyone who managed to get through all of the above. My heart goes out to all of you.
I'm not sure where to start. So I will pick last summer, August I believe it was. I got on my bike and couldn't ride for more than a couple of blocks. My legs turned to rubber bands and I had to dismount and wobbily push the bike home. I asked my husband to check it for me, as I assumed there was a low tire or stuck break. He didn't find much wrong, aired up the tire a bit, tinkered with the break...I got back on and was excited for the first block, and then the same thing happened. This was such a profoundly disturbing sensation that I haven't gotten on my bike since. Shortly after that, I started getting cramping in my right foot any time I tried to move my toes up or down. I have also been getting strange, intensely painful cramps up under my chin if I yawn too forcefully, and some mild cramping in my right hand and left ribcage. In the last few months I've developed twitching. It is mostly in my lower legs from calf to ankle, but also occasionally in left thigh and left buttock. Sometimes the left ribcage twitches as do both of my elbows. This twitching never stops. Then, what really got my attention and sent me in a blind panic to my PCP was when I noticed some atrophy between the thumb and forefinger of my right hand. I can also see tiny twitches in the atrophied area which I cannot feel. I have lost 40 pounds since February, but I was trying to adopt a healthier diet during that time, and now, this recent onset of anxiety has pretty much killed my appetite.
The PCP referred me to a Neurologist. I had a CMP which was all normal. I've had a MRI of the brain which was negative, and EMGs of both arms, both legs, and under my chin. I received a phone call from the nurse who kindly informed me that my upper EMGs showed mild carpal tunnel syndrome on the right side and there was nothing to indicate ALS. A week later I received a call about the lower EMGs, (they were done a week apart) simply stating they were normal. My follow up with the neurologist is Monday.
During my initial appointment, before the tests, the neurologist made a comment along the lines of, "unfortunately, even if the EMGs are negative, we can't be sure".
So, while I want to be reassured that all is well, I'm very worried since he did say that. Just FYI, I was recently diagnosed with Hashimoto's antibodies, but my TSH and free T-4 are both normal. I have an appointment with an endocrinologist next Thursday. I found out in 2016 that I had a positive Lyme titer in 2014 while in the ER for a very slow, irregular heart beat. I was hospitalized overnight and discharged before the results were available, I don't recall knowing they were testing me for Lyme, and somehow I was never notified. I did have a history of a tick and a rash that in my ignorance, I ignored at the time. So, in 2016 my PCP gave me a10 day course of Doxycycline, which I've since learned was not nearly enough, considering the amount of time that had elapsed. My PCP referred me to an Infectious Disease doctor at the same time as he referred me to the neurologist, but he hasn't returned my calls.
Do you have any recommendations as to what I should ask the neurologist on Monday? I work third shift and will be going directly from work to his office, so my brain will be very tired. I will need to write down any pertinent questions.
Thank you to anyone who managed to get through all of the above. My heart goes out to all of you.