JayMelen
New member
- Joined
- Nov 9, 2020
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- Los Angeles
I am suffering in silence and need advice please. I've tried to avoid posting here for months and thank you for reading my experience and for any guidance you can provide me. I don't want to cause panic within my family so I've been dealing with this on my own. I only discuss my symptoms with my Doctors, but it's wearing me out with worry. Here is what's happening: My left calf muscle appears to be disappearing and what's left of it twitches incessantly on some days and nights.
In March of 2020 I started noticing twitches all over my body (biceps, ankles, abdomen, temple, chest thighs) but more often than not, my left calf area. Then a month later I started feeling discomfort (dull pain) behind my left knee and it became somewhat uncomfortable to walk some days. About one month later in April 2020, I was in the shower and noticed a clear difference in the size of my legs, my left leg and calf being noticeably smaller that the right. When I flex the muscle there is a very noticeable difference and I do not know how long my calf been this way. The muscle now hurts almost all the time especially after the nights of non-stop twitching.
When the calf twitches, it's like an attack that can go on for hours, it keeps me up and tortures me during the day. On a few occasions I've had a similar "twitching attack" on my right calf or other parts of my body, but the left calf never subsides for more than a day or two since April. It feels like the twitches are eating the calf muscle up. Recently, my hands also started to hurt, especially my thumbs and index finger joints. My hands don't look right to me, they look too thin, look like they belong to a much older person; I am 46. My left shoulder hurts and for the last three days, the muscles between my shoulder blades hurt a lot at night and in the mornings.
Although I have the left leg discomfort, I have not fallen and I am not experiencing any clumsiness, no foot drop. I don't drop things but sometimes it hurts to hold things with my hands. Although it unconformable, I can still walk and do calf raises on each leg although the left calf tires faster or I have to stop before it cramps on me. It seems the outer part of the calf is all that is left and the inner part is very diminished. No symptom is strong enough that anyone except me can notice except for the occasional "you look tired" which I often am. If I twitch, I hide it so no one notices. I pray this isn't ALS.
Background: My health's decline began in late 2017 with an ecoli infection that I could not fight off without antibiotics. Gastro gave me 1 week of Cipro and Flagyl and all seemed better, but 3 weeks later the infection was back. Next, they gave me 2 weeks of Cipro and Flagyl. I cleared the bacteria after the second round but was left with strong and confirmed IBS. I battled the IBS for 2 years along with headaches, hand and leg tingling, strong bouts of frequent urination, ear ringing, stomach pain, rib pain, night sweats, oily urine, dry mouth... you name it. I thought I had a serious bowel disease. I underwent abdominal CT scans and a colonoscopy with no remarkable findings.
Then in 2019 I started noticing headaches when I ate, and at times vertigo as well. Dec of 2019 was the worst of it with a massive "flare up": ~20x urination in 24hrs, intense leg tingles, blurry vision, I could only sleep about an hour and it was all following the consumption of a smoothie and a sandwich (that is the only thing I can associate it with.) Based on this I suspected that I could be a diabetic or had undetected pancreatic issues (due to the gut pain.) I am a person who never calls in sick, but I had to tell my lead for the first time that I suspected diabetes and that I had something serious going on. My PCP and I agreed I should see and endocrinologist and a neurologist. The endocrinologist gave me a glucose meter and concluded no diabetic processes was present based on blood sugar measurements. A1C also did not support diabetes.
My primary care provider tested me for auto immune diseases uch aa Lupus, celiac, STDs, you name it... all negative. We tested for Lyme and one band came back positive indicating some type of past infection but doctor said that two bands needed to be positive for it to be Lyme diagnosis.
After many doctor visits and many tests, and a month before the twitches started, I visited a neurologist in Feb 2020 (at Cedar Sinai) for the constant hand tingling at night, leg tingles at all times, urination and right forearm numbness and pain. Up to this point an ALS possibility was not on my radar, again the twitches had not started yet. I honestly did not fully understand ALS at that point. There is no family history of it in my tree. At this first visit, the neurologist did not mention any possibility of ALS. Coincidentally almost all IBS cleared up in early 2020. I was so happy that my gut was better and then the twitches began.
At this first neurologist visit Dr ordered three tests: brain MRI, blood test for autoimmune neuropathy and an EMG. He examined me and said all seemed normal except some possible mild neuropathy. Neither he or I noticed the leg atrophy at this time, calf was not bothering me then so my calf muscles were not closely examined. In March 2020 I spoke to the neurologist again over the phone and he said that the MRI of my brain was clear, he concluded there was no MS based on the MRI. I asked if we should MRI my spine to be sure and he said not needed, the brain MRI was enough. I could not find a lab to complete the blood test for autoimmune neuropathy, so he said never mind on that lab work. I mentioned the twitches that started a month after I first visited him and he told me to take magnesium and that they were most likely benign fasciculations.
He asked about the EMG and I told him I had not completed it as I feared an ALS diagnosis and did not see the point in diagnosing a disease I could do nothing about in terms of a solution. Plus, I had read about false positive and false negative EMGs. He said it was very unlikely based on the odds that it was ALS but that we should rule it out since I had concerns. I went back in person to see Neuro in July and explained the twitching continued despite magnesium and showed the leg difference I was now experiencing. He also noticed the atrophy and switched the order for the EMG from the right leg and arm to the left leg and arm. He said he'd be surprised if it was ALS and offered no other paths aside from seeing an orthopedic doctor. He measured my calves using his hands and said it was 80% of the right. Then he said, ALS is an asymmetric disease and that sent me down a chute.
Per the orthopedic doctor I visited last month, my left leg Xray was clear but he measured 3/8" less circumference left calf vs right. He used the term atrophic to describe my leg and said primary cause was neurological as he dictated notes. He ordered an MRI which I complete but I won't have the results until later this week when I see him again.
In the end, my PCP says she'd be surprised if it is ALS, my rheumatologist says it sounds more like MS than ALS (I have ankylosing spondylitis, but he says that disease is not causing my symptoms.) A visited a reputable infectious disease doctor as well and she said it is not infectious disease related and she also doesn't think it's ALS. I visited her because in my perspective this all started with the e coli, and I have traveled outside the country and mosquitos have enjoyed me for lunch a few times. I see a psychiatrist for grief counseling after losing my mother to lung cancer in 2015. He also does not think it's ALS.
I asked if he thinks I am a hypochondriac and he said "no" as I am not seeking sympathy, recognition or someone to care for me. I agree, I am a very independent and driven aerospace engineer. I just want to go back to being who I was before all this began and I don't wish to worry others.
My EMG is now scheduled for Nov 30th and I feel like I have to do it even if the results are unfavorable and shatter my life. I'm in serious dread however. In many ways I've accepted the possibility and have prepared all my affairs fearing the worst: my estate plan, a will, letters to my relatives, sold things, donated clothes. I've deferred purchasing a home, career advancement opportunities all based on this fear that something is seriously wrong with me neurologically.
Now I am asking, based on your experience, are there other paths I should be pursuing in parallel or other questions I should be asking of my doctors?
Would you go with the EMG if you had to do it all over again or just wait for time to tell with progression?
Does this sound like possible ALS to you? The odds tell me no, but my symptoms, especially the calf atrophy make me fear that it is.
I know this is lengthy and I thank you kindly for taking the time to read it.
JMG
In March of 2020 I started noticing twitches all over my body (biceps, ankles, abdomen, temple, chest thighs) but more often than not, my left calf area. Then a month later I started feeling discomfort (dull pain) behind my left knee and it became somewhat uncomfortable to walk some days. About one month later in April 2020, I was in the shower and noticed a clear difference in the size of my legs, my left leg and calf being noticeably smaller that the right. When I flex the muscle there is a very noticeable difference and I do not know how long my calf been this way. The muscle now hurts almost all the time especially after the nights of non-stop twitching.
When the calf twitches, it's like an attack that can go on for hours, it keeps me up and tortures me during the day. On a few occasions I've had a similar "twitching attack" on my right calf or other parts of my body, but the left calf never subsides for more than a day or two since April. It feels like the twitches are eating the calf muscle up. Recently, my hands also started to hurt, especially my thumbs and index finger joints. My hands don't look right to me, they look too thin, look like they belong to a much older person; I am 46. My left shoulder hurts and for the last three days, the muscles between my shoulder blades hurt a lot at night and in the mornings.
Although I have the left leg discomfort, I have not fallen and I am not experiencing any clumsiness, no foot drop. I don't drop things but sometimes it hurts to hold things with my hands. Although it unconformable, I can still walk and do calf raises on each leg although the left calf tires faster or I have to stop before it cramps on me. It seems the outer part of the calf is all that is left and the inner part is very diminished. No symptom is strong enough that anyone except me can notice except for the occasional "you look tired" which I often am. If I twitch, I hide it so no one notices. I pray this isn't ALS.
Background: My health's decline began in late 2017 with an ecoli infection that I could not fight off without antibiotics. Gastro gave me 1 week of Cipro and Flagyl and all seemed better, but 3 weeks later the infection was back. Next, they gave me 2 weeks of Cipro and Flagyl. I cleared the bacteria after the second round but was left with strong and confirmed IBS. I battled the IBS for 2 years along with headaches, hand and leg tingling, strong bouts of frequent urination, ear ringing, stomach pain, rib pain, night sweats, oily urine, dry mouth... you name it. I thought I had a serious bowel disease. I underwent abdominal CT scans and a colonoscopy with no remarkable findings.
Then in 2019 I started noticing headaches when I ate, and at times vertigo as well. Dec of 2019 was the worst of it with a massive "flare up": ~20x urination in 24hrs, intense leg tingles, blurry vision, I could only sleep about an hour and it was all following the consumption of a smoothie and a sandwich (that is the only thing I can associate it with.) Based on this I suspected that I could be a diabetic or had undetected pancreatic issues (due to the gut pain.) I am a person who never calls in sick, but I had to tell my lead for the first time that I suspected diabetes and that I had something serious going on. My PCP and I agreed I should see and endocrinologist and a neurologist. The endocrinologist gave me a glucose meter and concluded no diabetic processes was present based on blood sugar measurements. A1C also did not support diabetes.
My primary care provider tested me for auto immune diseases uch aa Lupus, celiac, STDs, you name it... all negative. We tested for Lyme and one band came back positive indicating some type of past infection but doctor said that two bands needed to be positive for it to be Lyme diagnosis.
After many doctor visits and many tests, and a month before the twitches started, I visited a neurologist in Feb 2020 (at Cedar Sinai) for the constant hand tingling at night, leg tingles at all times, urination and right forearm numbness and pain. Up to this point an ALS possibility was not on my radar, again the twitches had not started yet. I honestly did not fully understand ALS at that point. There is no family history of it in my tree. At this first visit, the neurologist did not mention any possibility of ALS. Coincidentally almost all IBS cleared up in early 2020. I was so happy that my gut was better and then the twitches began.
At this first neurologist visit Dr ordered three tests: brain MRI, blood test for autoimmune neuropathy and an EMG. He examined me and said all seemed normal except some possible mild neuropathy. Neither he or I noticed the leg atrophy at this time, calf was not bothering me then so my calf muscles were not closely examined. In March 2020 I spoke to the neurologist again over the phone and he said that the MRI of my brain was clear, he concluded there was no MS based on the MRI. I asked if we should MRI my spine to be sure and he said not needed, the brain MRI was enough. I could not find a lab to complete the blood test for autoimmune neuropathy, so he said never mind on that lab work. I mentioned the twitches that started a month after I first visited him and he told me to take magnesium and that they were most likely benign fasciculations.
He asked about the EMG and I told him I had not completed it as I feared an ALS diagnosis and did not see the point in diagnosing a disease I could do nothing about in terms of a solution. Plus, I had read about false positive and false negative EMGs. He said it was very unlikely based on the odds that it was ALS but that we should rule it out since I had concerns. I went back in person to see Neuro in July and explained the twitching continued despite magnesium and showed the leg difference I was now experiencing. He also noticed the atrophy and switched the order for the EMG from the right leg and arm to the left leg and arm. He said he'd be surprised if it was ALS and offered no other paths aside from seeing an orthopedic doctor. He measured my calves using his hands and said it was 80% of the right. Then he said, ALS is an asymmetric disease and that sent me down a chute.
Per the orthopedic doctor I visited last month, my left leg Xray was clear but he measured 3/8" less circumference left calf vs right. He used the term atrophic to describe my leg and said primary cause was neurological as he dictated notes. He ordered an MRI which I complete but I won't have the results until later this week when I see him again.
In the end, my PCP says she'd be surprised if it is ALS, my rheumatologist says it sounds more like MS than ALS (I have ankylosing spondylitis, but he says that disease is not causing my symptoms.) A visited a reputable infectious disease doctor as well and she said it is not infectious disease related and she also doesn't think it's ALS. I visited her because in my perspective this all started with the e coli, and I have traveled outside the country and mosquitos have enjoyed me for lunch a few times. I see a psychiatrist for grief counseling after losing my mother to lung cancer in 2015. He also does not think it's ALS.
I asked if he thinks I am a hypochondriac and he said "no" as I am not seeking sympathy, recognition or someone to care for me. I agree, I am a very independent and driven aerospace engineer. I just want to go back to being who I was before all this began and I don't wish to worry others.
My EMG is now scheduled for Nov 30th and I feel like I have to do it even if the results are unfavorable and shatter my life. I'm in serious dread however. In many ways I've accepted the possibility and have prepared all my affairs fearing the worst: my estate plan, a will, letters to my relatives, sold things, donated clothes. I've deferred purchasing a home, career advancement opportunities all based on this fear that something is seriously wrong with me neurologically.
Now I am asking, based on your experience, are there other paths I should be pursuing in parallel or other questions I should be asking of my doctors?
Would you go with the EMG if you had to do it all over again or just wait for time to tell with progression?
Does this sound like possible ALS to you? The odds tell me no, but my symptoms, especially the calf atrophy make me fear that it is.
I know this is lengthy and I thank you kindly for taking the time to read it.
JMG
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