feralgreen
22-11-18, 16:44
Hello all,
long time lurker, first time poster here. I have been battling health anxiety for about 5 years, ever since my father died from stomach cancer. This forum has helped me immensely whenever I had been going through various bouts of HA. I, as well as many members of the forum, over the course of 5 years, have diagnosed myself with multiple deadly illnesses, have visited many doctors, spend a shitload of money on various exams and last but not least have almost broken my own marriage. This whole thing eventually landed me on CBT and with occasional small relapses and after a kiloton of Xanax - I am almost recovered.
I often see people posting about ALS and I would just like to share my insights as it has been my deepest rabbit hole through the period - to the point where I was so sure that I have the disease that I have spent my days choosing my future wheelchair or researching eyegaze technology for the assisted speech. As I plunged deeper and deeper into the illness and after numerous visits to neurologists I have gathered a wealth of knowledge that I would like to share with anyone who's been suffering from the same fears. My first symptom that pointed me towards ALS was widespread body-twitching (dduuuuhhh...), later came perceived weakness, muscle cramps, perceived difficulty of speech and trouble swallowing. Shit, when I think about it - I have had every single symptom of all forms of ALS known to man-kind.
1. Sticky at the top of the page about ALS gives the best explanation of the real and perceived symptoms.
2. As anyone who suffers from ALS HA already knows - ALS is extremely rare. I come from a small country, our capital has 800,000 residents. The leading neuro from the biggest hospital has told me that they diagnose two cases of ALS in the whole city a year. TWO CASES.
3. As I was going through my bulbar ALS fear period at the time, the neuro actually said to me that at my age (32) I have a greater chance of being diagnosed with bowel cancer and being hit by a car at the same day than developing a bulbar ALS at this age. I was reassured that he has never seen a bulbar patient of this age.
4. Of course, odds don't matter as us, HA sufferers always feel that we can be that one in a million. Sad thing, though, is that we are not that unique :(
5. Although EMG is a gold-standard test for diagnosing ALS an experienced neuro will never give you this test unless there are significant clinical findings that indicate weakness. I was told that by the first neuro that I have visited and of course that wasn't enough for me as I was sure that I have the illness. I have visited two more neuros after that and none of them gave me the test. I was furious - I have already chosen the model of the wheelchair I would have but none of the doctors gave me the actual diagnosis. Thing is this - an experienced neuro, who's well-versed with the knowledge of the disease can spot it, although many resources will claim that ALS is extremely difficult to diagnose. Trust your neuro.
6. As twitching was my primary symptom (I had them everywhere - calves, lips, hands, ass, even the tongue) - I was advised by one of the neuros to have a twitching diary. Like at the end of the day I tried to re-call how many times I have twitched and what I have done on the day in general. Weirdly, I soon found the correlation that the more stressful day I was having the more I twitched.
7. As you well know, twitching usually comes after the muscles have atrophied in ALS as twitching is the way that neurons are trying to reconnect themselves. There is no such thing as twitch only ALS and with body wide twitching is it astronomically unlikely that it is caused by this particular illness.
8. Many of us, HA sufferers have discovered a alsforum.org and it's section "Do I have ALS?". People on that forum are wonderful and helpful although they are battling an horrible illness. But for us, HA sufferers, that forum is a horrid place. Because if we look hard enough, we will definitely find one case where our symptoms match the symptoms of someone who has actually been diagnosed with ALS. My advice - stay away from that forum if you can.
9. One more thing about Bulbar which is a most common fear as I have found. As you know ALS is disease of the elderly, but even more so it's Bulbar form. Bulbar is almost never diagnosed in someone under 40. The few more notes that I've got from the neuro about Bulbar are about the perceived symptoms. Like difficulty swallowing - in ALS the difficulty is not a subtle one, like if you need to swallow couple of times to get the food down, it is not difficulty. People with ALS choke on their food. Same goes with perceived slurred speech - if you trip on your words or find yourself sounding weird this is not a true slurred speech. Other would notice.
10. And last but not least. The moment you read more about ALS and it's symptoms you will start strength testing yourself. You will try to stand on your toes, flex your muscle, you will try to find any sign of atrophy aaaaanddd... you WILL FIND ONE. Our bodies are not symmetrical. Asymmetry is not atrophy. As for my strength tests I have tried running up and down the stairs holding my cat in my arms (don't ask why)... The next day came the muscle cramping. I was sure that it was a part of disease. I was sure that it was the illness. The more I tested myself, the more my muscles cramped... Well... The moment I have stopped my strength testing, for the good of myself and my cat, my muscles have stopped cramping.
11. And an extra thing - BFS, a condition that causes benign muscle twitches, is way more common than ALS. There is a forum aboutBFS.com - although inactive, it has a great wealth of the resource that will help you to calm your fears down.
So. ALS is a horrible illness. But most of us being young, odds are always, ALWAYS in our favor. If you are worried, get checked by a neuro. If you are still worried.... Get help from a therapist.
long time lurker, first time poster here. I have been battling health anxiety for about 5 years, ever since my father died from stomach cancer. This forum has helped me immensely whenever I had been going through various bouts of HA. I, as well as many members of the forum, over the course of 5 years, have diagnosed myself with multiple deadly illnesses, have visited many doctors, spend a shitload of money on various exams and last but not least have almost broken my own marriage. This whole thing eventually landed me on CBT and with occasional small relapses and after a kiloton of Xanax - I am almost recovered.
I often see people posting about ALS and I would just like to share my insights as it has been my deepest rabbit hole through the period - to the point where I was so sure that I have the disease that I have spent my days choosing my future wheelchair or researching eyegaze technology for the assisted speech. As I plunged deeper and deeper into the illness and after numerous visits to neurologists I have gathered a wealth of knowledge that I would like to share with anyone who's been suffering from the same fears. My first symptom that pointed me towards ALS was widespread body-twitching (dduuuuhhh...), later came perceived weakness, muscle cramps, perceived difficulty of speech and trouble swallowing. Shit, when I think about it - I have had every single symptom of all forms of ALS known to man-kind.
1. Sticky at the top of the page about ALS gives the best explanation of the real and perceived symptoms.
2. As anyone who suffers from ALS HA already knows - ALS is extremely rare. I come from a small country, our capital has 800,000 residents. The leading neuro from the biggest hospital has told me that they diagnose two cases of ALS in the whole city a year. TWO CASES.
3. As I was going through my bulbar ALS fear period at the time, the neuro actually said to me that at my age (32) I have a greater chance of being diagnosed with bowel cancer and being hit by a car at the same day than developing a bulbar ALS at this age. I was reassured that he has never seen a bulbar patient of this age.
4. Of course, odds don't matter as us, HA sufferers always feel that we can be that one in a million. Sad thing, though, is that we are not that unique :(
5. Although EMG is a gold-standard test for diagnosing ALS an experienced neuro will never give you this test unless there are significant clinical findings that indicate weakness. I was told that by the first neuro that I have visited and of course that wasn't enough for me as I was sure that I have the illness. I have visited two more neuros after that and none of them gave me the test. I was furious - I have already chosen the model of the wheelchair I would have but none of the doctors gave me the actual diagnosis. Thing is this - an experienced neuro, who's well-versed with the knowledge of the disease can spot it, although many resources will claim that ALS is extremely difficult to diagnose. Trust your neuro.
6. As twitching was my primary symptom (I had them everywhere - calves, lips, hands, ass, even the tongue) - I was advised by one of the neuros to have a twitching diary. Like at the end of the day I tried to re-call how many times I have twitched and what I have done on the day in general. Weirdly, I soon found the correlation that the more stressful day I was having the more I twitched.
7. As you well know, twitching usually comes after the muscles have atrophied in ALS as twitching is the way that neurons are trying to reconnect themselves. There is no such thing as twitch only ALS and with body wide twitching is it astronomically unlikely that it is caused by this particular illness.
8. Many of us, HA sufferers have discovered a alsforum.org and it's section "Do I have ALS?". People on that forum are wonderful and helpful although they are battling an horrible illness. But for us, HA sufferers, that forum is a horrid place. Because if we look hard enough, we will definitely find one case where our symptoms match the symptoms of someone who has actually been diagnosed with ALS. My advice - stay away from that forum if you can.
9. One more thing about Bulbar which is a most common fear as I have found. As you know ALS is disease of the elderly, but even more so it's Bulbar form. Bulbar is almost never diagnosed in someone under 40. The few more notes that I've got from the neuro about Bulbar are about the perceived symptoms. Like difficulty swallowing - in ALS the difficulty is not a subtle one, like if you need to swallow couple of times to get the food down, it is not difficulty. People with ALS choke on their food. Same goes with perceived slurred speech - if you trip on your words or find yourself sounding weird this is not a true slurred speech. Other would notice.
10. And last but not least. The moment you read more about ALS and it's symptoms you will start strength testing yourself. You will try to stand on your toes, flex your muscle, you will try to find any sign of atrophy aaaaanddd... you WILL FIND ONE. Our bodies are not symmetrical. Asymmetry is not atrophy. As for my strength tests I have tried running up and down the stairs holding my cat in my arms (don't ask why)... The next day came the muscle cramping. I was sure that it was a part of disease. I was sure that it was the illness. The more I tested myself, the more my muscles cramped... Well... The moment I have stopped my strength testing, for the good of myself and my cat, my muscles have stopped cramping.
11. And an extra thing - BFS, a condition that causes benign muscle twitches, is way more common than ALS. There is a forum aboutBFS.com - although inactive, it has a great wealth of the resource that will help you to calm your fears down.
So. ALS is a horrible illness. But most of us being young, odds are always, ALWAYS in our favor. If you are worried, get checked by a neuro. If you are still worried.... Get help from a therapist.