humronan
New member
- Joined
- Feb 9, 2016
- Messages
- 6
- Reason
- Learn about ALS
- Country
- US
- State
- Az
- City
- Mesa
Hello Everyone,
I first off want to thank you in advance for taking the time to read over my story and any advice that is given. I have silently been going to this site for over a year off and on as my symptoms have increased, but I now feel I need to seek some support as my condition continues to get worse. It is a long story that ends with me currently being examined at the Mayo clinic and my health deteriorating. At this point I am trying everything to figure out what is going on.
I am a 36 year old male and my symptoms first appeared about 2 years ago with pain in my left index finger and forearm. At the time the only thing that this disrupted was me playing my guitar and working on a computer. I also noticed that the first thing in the morning my feet would hurt for my first few steps out of bed. Then about a year and half ago my left hand became stiff and sore, which eventually went to my right hand as well. After a few months of this my forearms began to get tight and the muscles were painful if I pressed on them. I was finally referred to an orthopedic who ran my first EMG. In October 2014 I was diagnosed with carpel and cubital tunnel syndrome, and mild ulnar neuropathy. The doctor wanted to monitor my situation and then the next step would be surgery. I of course wanted to hold off on surgery as long as possible to see if my situation would improve. Thank goodness I did (explanation coming soon)
Around the time I started having my arm issues I noticed I had a numb spot come and go on my upper right back. I still have this today. Along with this I started to notice that the pain I was feeling in my forearms was now on both my outer shin muscles. I went back to my doctor and they ran some blood work and this is when I found out I had diabetes. I was barely out of the pre-diabetic range so it wasn’t a dire situation. At this point there was some thought by my doctors that my diabetes was potentially causing the issues in my arms and legs. I proceeded to change my diet and exercise and lost 50lbs. I was in the best shape of my life and off all my medicine (blood pressure, cholesterol, and metformin for diabetes). I thought with these changes my symptoms would improve but the opposite has occurred.
Around July 2015 I started to have random muscle twitches all over my body along with headaches. At this time the twitches were mainly on my arms and legs. My headaches were causing me to have visual problems along with some sound sensitivity. (This would appear to be due to migraines, which I would be diagnosed with in a few months) These symptoms prompted my doctor to refer me to a neurologist.
My first neurology test went well and I was referred to get an MRI of my brain and neck. This was I believe to rule out MS. My brain MRI came back fine and the neck MRI show some mild multilevel degenerative changes more advanced for my age, but nothing major.
In August of 2015 I started to have jaw pain, which I would attribute to clenching my jaw at night. With these new symptoms I was referred to a neuromuscular doctor who I visited in October of 2015. This doctor diagnosed me with chronic migraines and prescribed me nortryptoline. This took about 2 months to kick in and it has stopped all my migraines and symptoms. But I was still having issues with my legs and arms at this time and I was starting to notice the muscles were getting soft. I was then ordered to have my first full body EMG.
In December 2015 I was given an EMG on my right arm and leg and everything came back completely normal including that I don’t have carpel or cutibal tunnel. I was misdiagnosed by the orthopedic, which was very frustrating because over this time I had seen a rheumatologist and cardiologist who both were under the impression that my issues were due to carpel and cubital tunnel. Around this time I also noticed that my elbows and knees were starting to become boney and the muscles on my forearms and lower legs were becoming softer. I mentioned this to my neuromuscular doctor and he dismissed it along with not even giving me a physical examination.
At this point I was exhausted with doctors and couldn’t believe I had been misdiagnosed along without getting even an exam from the neuromuscular doctor. I decided to go to the Mayo clinic since I live 20 miles from the one in Arizona and my insurance covers this.
I was immediately referred to the neurologist at Mayo after discussing my symptoms with my new doctor and they ordered another EMG to see which previous one was right. The new EMG confirmed my latest results that I don’t have carpel or cubital tunnel syndrome. The EMG was “essentially” normal with no evidence of a peripheral neuropathy, ALS, or right ulnar neuropathy. But they did mention that I have mildly increased insertional activity in essentially all muscles. The technician said I had some irritability in all my muscles but some people just have that.
I then saw the neurologist and did a complete exam and seemed to do fairly well but was referred to do 2 tests to see if I have small fiber neuropathy. I asked if I could possibly have ALS and he said no, no, no and to get that out of my mind.
The only problem I have letting this go is that over the past month I have severely noticed my elbow and knee muscles are wasting away to almost just bones. This is now accompanying a lot of muscle and nerve pain. I am able to walk but if I stand for any period of time I have sharp pains shoot through my knees as if they can’t support my body. My wife for the first time is really taking notice of my physical changes and we are both worried as we know I definitely have something wrong with me. Over the past 2 years we have listened to the doctors and kept as positive as possible, but now with my body wasting at the knees, elbows, forearms and lower legs along with more and more pain we are both really worried. I know there are so many diseases out there and sometimes it takes a long time to figure these out. I am just so worried even thought the doctors have told me it’s not ALS that with muscle twitches for 9 months and now muscle atrophy that I am one of the rare cases that the doctors miss the diagnosis even though all the other test so far have looked decent.
Sorry for the long story, but I wanted to make sure I didn’t leave anything out. I have a 2 year old daughter and a wonderful wife and I feel like my body is slowly breaking down.
Any advice and thoughts would be greatly appreciated to those who have made it to the end of my novel. I know that being at the Mayo clinic they will eventually figure this out, but at this point I am just trying everything and anything to figure out what I have.
Thanks!
I first off want to thank you in advance for taking the time to read over my story and any advice that is given. I have silently been going to this site for over a year off and on as my symptoms have increased, but I now feel I need to seek some support as my condition continues to get worse. It is a long story that ends with me currently being examined at the Mayo clinic and my health deteriorating. At this point I am trying everything to figure out what is going on.
I am a 36 year old male and my symptoms first appeared about 2 years ago with pain in my left index finger and forearm. At the time the only thing that this disrupted was me playing my guitar and working on a computer. I also noticed that the first thing in the morning my feet would hurt for my first few steps out of bed. Then about a year and half ago my left hand became stiff and sore, which eventually went to my right hand as well. After a few months of this my forearms began to get tight and the muscles were painful if I pressed on them. I was finally referred to an orthopedic who ran my first EMG. In October 2014 I was diagnosed with carpel and cubital tunnel syndrome, and mild ulnar neuropathy. The doctor wanted to monitor my situation and then the next step would be surgery. I of course wanted to hold off on surgery as long as possible to see if my situation would improve. Thank goodness I did (explanation coming soon)
Around the time I started having my arm issues I noticed I had a numb spot come and go on my upper right back. I still have this today. Along with this I started to notice that the pain I was feeling in my forearms was now on both my outer shin muscles. I went back to my doctor and they ran some blood work and this is when I found out I had diabetes. I was barely out of the pre-diabetic range so it wasn’t a dire situation. At this point there was some thought by my doctors that my diabetes was potentially causing the issues in my arms and legs. I proceeded to change my diet and exercise and lost 50lbs. I was in the best shape of my life and off all my medicine (blood pressure, cholesterol, and metformin for diabetes). I thought with these changes my symptoms would improve but the opposite has occurred.
Around July 2015 I started to have random muscle twitches all over my body along with headaches. At this time the twitches were mainly on my arms and legs. My headaches were causing me to have visual problems along with some sound sensitivity. (This would appear to be due to migraines, which I would be diagnosed with in a few months) These symptoms prompted my doctor to refer me to a neurologist.
My first neurology test went well and I was referred to get an MRI of my brain and neck. This was I believe to rule out MS. My brain MRI came back fine and the neck MRI show some mild multilevel degenerative changes more advanced for my age, but nothing major.
In August of 2015 I started to have jaw pain, which I would attribute to clenching my jaw at night. With these new symptoms I was referred to a neuromuscular doctor who I visited in October of 2015. This doctor diagnosed me with chronic migraines and prescribed me nortryptoline. This took about 2 months to kick in and it has stopped all my migraines and symptoms. But I was still having issues with my legs and arms at this time and I was starting to notice the muscles were getting soft. I was then ordered to have my first full body EMG.
In December 2015 I was given an EMG on my right arm and leg and everything came back completely normal including that I don’t have carpel or cutibal tunnel. I was misdiagnosed by the orthopedic, which was very frustrating because over this time I had seen a rheumatologist and cardiologist who both were under the impression that my issues were due to carpel and cubital tunnel. Around this time I also noticed that my elbows and knees were starting to become boney and the muscles on my forearms and lower legs were becoming softer. I mentioned this to my neuromuscular doctor and he dismissed it along with not even giving me a physical examination.
At this point I was exhausted with doctors and couldn’t believe I had been misdiagnosed along without getting even an exam from the neuromuscular doctor. I decided to go to the Mayo clinic since I live 20 miles from the one in Arizona and my insurance covers this.
I was immediately referred to the neurologist at Mayo after discussing my symptoms with my new doctor and they ordered another EMG to see which previous one was right. The new EMG confirmed my latest results that I don’t have carpel or cubital tunnel syndrome. The EMG was “essentially” normal with no evidence of a peripheral neuropathy, ALS, or right ulnar neuropathy. But they did mention that I have mildly increased insertional activity in essentially all muscles. The technician said I had some irritability in all my muscles but some people just have that.
I then saw the neurologist and did a complete exam and seemed to do fairly well but was referred to do 2 tests to see if I have small fiber neuropathy. I asked if I could possibly have ALS and he said no, no, no and to get that out of my mind.
The only problem I have letting this go is that over the past month I have severely noticed my elbow and knee muscles are wasting away to almost just bones. This is now accompanying a lot of muscle and nerve pain. I am able to walk but if I stand for any period of time I have sharp pains shoot through my knees as if they can’t support my body. My wife for the first time is really taking notice of my physical changes and we are both worried as we know I definitely have something wrong with me. Over the past 2 years we have listened to the doctors and kept as positive as possible, but now with my body wasting at the knees, elbows, forearms and lower legs along with more and more pain we are both really worried. I know there are so many diseases out there and sometimes it takes a long time to figure these out. I am just so worried even thought the doctors have told me it’s not ALS that with muscle twitches for 9 months and now muscle atrophy that I am one of the rare cases that the doctors miss the diagnosis even though all the other test so far have looked decent.
Sorry for the long story, but I wanted to make sure I didn’t leave anything out. I have a 2 year old daughter and a wonderful wife and I feel like my body is slowly breaking down.
Any advice and thoughts would be greatly appreciated to those who have made it to the end of my novel. I know that being at the Mayo clinic they will eventually figure this out, but at this point I am just trying everything and anything to figure out what I have.
Thanks!