Naeco
Active member
- Joined
- Aug 18, 2009
- Messages
- 75
- Reason
- Learn about ALS
- Country
- US
- State
- AZ
- City
- AZ
Hi,
I'm new to the group and was hoping to get some of your thoughts on the stuff that I've been going through recently. Sorry if this seems a bit lengthy before it starts to relate to ALS but just wanted to give the whole history because it seems to be happening in a chain of events.
About 6 years ago I went to the doctor with really bad fatigue whenever I tried to exercise and could only run for about 5 minutes before I felt like I was going to collapse. He did some blood work and everything turned up fine and he really didn't seem all that concerned about it so I wasn't either. The symptoms persisted for about 6-8 months and started to get more manageable over time but never completely went away.
Then in January of this year I had to have my appendix removed and I've never fully recovered because of various symptoms that my doctors seem to think are related to some type of autoimmune disorder that they haven't been able to isolate (negative for Crones and similar disorders) but the symptoms have been getting worse each month with stomach and hand infections and now the muscle fatigue that I had 6 years ago has come back worse than ever.
I had been seeing an Endocrinologist recently because I have Type 1 diabetes and the infections have really taken a toll on what used to be very well controlled diabetes. She said she's done all of the blood work in her area and the only thing that turned up was a Vitamin D deficiency - but she also said it might be caused by some type of autoimmune disorder that she thinks that I have (she's mentioned MS, RA, ALS and Lupus by name although so said I was missing some key symptoms with each of them). So when I had my appointment with her last week my symptoms had really escalated and I was having crippling fatigue where I could barely walk up the stairs and even walking across the room makes me collapse on the couch and breathing very heavy. I usually don't have any headaches but I've been waking up with them almost every morning ever since the severe symptoms started. My speech has become really slurred and I can't pronounce certain syllables anymore without people looking at my funny. My muscles have gotten to a point where they're sore for days after doing routine things like walking up and down the stairs several times. I've also become very off balanced and need to hold onto things when I change directions while walking. My Endocrinologist recommended that I see a neurologist and it got me really scared because I had looked up some of the symptoms of the autoimmune disorders she had mentioned in the past and it seemed like things were starting to point toward ALS. The only symptoms I don't have are the problems with swallowing.
So I went to the neurologist this morning and it was one of the strangest appointments that I've ever had. I told her what the Endo had told me about possibly having an autoimmune disorder and recommending that I see a Neuro and she looks at me like I'm crazy and says that she doesn't know why I'm coming to her if I have an Autoimmune disorder and so I felt really dumb and told her that ALS had been mentioned as a possibility and she laughed and said that ALS patients don't look like me and I wouldn't be walking in on my own if I had ALS. I was at a loss for words and didn't really know what to do because the symptoms have been so severe and I don't know where to turn next. So I basically just said that I would appreciate if she could take the tests just so that we could rule out the possibility and she just told me that she was the specialist and I don't have ALS. So all these things are going through my head because I'm barely able to work and I've had to strongly consider going in disability (after not taking a sick day in 9 years) in the last couple weeks because of the severe affect the symptoms are having on my ability to perform normal tasks at work and yet my doctor is laughing off the symptoms - as if I'm joking. So I asked her one last time if she could test for ALS and she said "fine but I'm writing that it's the patients request - not mine".
I don't know if the doctor had that reaction because I'm 31 years old and have always had an athletic build but that seems extremely short sighting to say that I "don't look like I have ALS" I've lost 10 pounds in the last 2 weeks and my arms and legs have lost much of the muscle tone but it still doesn't come close to matching the weakness that I'm going through.
Now I'm worried that if I go through with the tests, my insurance might not cover it because the paperwork says that it's at my own request. I know ALS is very rare but is this normal to have this type of reaction from the doctor? Please believe me I have a 2yr old son and ALS is not something that I want to think about but I'm also at a point where I've taken 8 months of tests and blood work and have only been left with more questions then answers. I don't know where to turn next.
Sincerely,
John
I'm new to the group and was hoping to get some of your thoughts on the stuff that I've been going through recently. Sorry if this seems a bit lengthy before it starts to relate to ALS but just wanted to give the whole history because it seems to be happening in a chain of events.
About 6 years ago I went to the doctor with really bad fatigue whenever I tried to exercise and could only run for about 5 minutes before I felt like I was going to collapse. He did some blood work and everything turned up fine and he really didn't seem all that concerned about it so I wasn't either. The symptoms persisted for about 6-8 months and started to get more manageable over time but never completely went away.
Then in January of this year I had to have my appendix removed and I've never fully recovered because of various symptoms that my doctors seem to think are related to some type of autoimmune disorder that they haven't been able to isolate (negative for Crones and similar disorders) but the symptoms have been getting worse each month with stomach and hand infections and now the muscle fatigue that I had 6 years ago has come back worse than ever.
I had been seeing an Endocrinologist recently because I have Type 1 diabetes and the infections have really taken a toll on what used to be very well controlled diabetes. She said she's done all of the blood work in her area and the only thing that turned up was a Vitamin D deficiency - but she also said it might be caused by some type of autoimmune disorder that she thinks that I have (she's mentioned MS, RA, ALS and Lupus by name although so said I was missing some key symptoms with each of them). So when I had my appointment with her last week my symptoms had really escalated and I was having crippling fatigue where I could barely walk up the stairs and even walking across the room makes me collapse on the couch and breathing very heavy. I usually don't have any headaches but I've been waking up with them almost every morning ever since the severe symptoms started. My speech has become really slurred and I can't pronounce certain syllables anymore without people looking at my funny. My muscles have gotten to a point where they're sore for days after doing routine things like walking up and down the stairs several times. I've also become very off balanced and need to hold onto things when I change directions while walking. My Endocrinologist recommended that I see a neurologist and it got me really scared because I had looked up some of the symptoms of the autoimmune disorders she had mentioned in the past and it seemed like things were starting to point toward ALS. The only symptoms I don't have are the problems with swallowing.
So I went to the neurologist this morning and it was one of the strangest appointments that I've ever had. I told her what the Endo had told me about possibly having an autoimmune disorder and recommending that I see a Neuro and she looks at me like I'm crazy and says that she doesn't know why I'm coming to her if I have an Autoimmune disorder and so I felt really dumb and told her that ALS had been mentioned as a possibility and she laughed and said that ALS patients don't look like me and I wouldn't be walking in on my own if I had ALS. I was at a loss for words and didn't really know what to do because the symptoms have been so severe and I don't know where to turn next. So I basically just said that I would appreciate if she could take the tests just so that we could rule out the possibility and she just told me that she was the specialist and I don't have ALS. So all these things are going through my head because I'm barely able to work and I've had to strongly consider going in disability (after not taking a sick day in 9 years) in the last couple weeks because of the severe affect the symptoms are having on my ability to perform normal tasks at work and yet my doctor is laughing off the symptoms - as if I'm joking. So I asked her one last time if she could test for ALS and she said "fine but I'm writing that it's the patients request - not mine".
I don't know if the doctor had that reaction because I'm 31 years old and have always had an athletic build but that seems extremely short sighting to say that I "don't look like I have ALS" I've lost 10 pounds in the last 2 weeks and my arms and legs have lost much of the muscle tone but it still doesn't come close to matching the weakness that I'm going through.
Now I'm worried that if I go through with the tests, my insurance might not cover it because the paperwork says that it's at my own request. I know ALS is very rare but is this normal to have this type of reaction from the doctor? Please believe me I have a 2yr old son and ALS is not something that I want to think about but I'm also at a point where I've taken 8 months of tests and blood work and have only been left with more questions then answers. I don't know where to turn next.
Sincerely,
John