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humronan

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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!
 

Nikki J

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Are you literally in the middle of a diagnostic work up at Mayo? If so did they confirm the atrophy? What testing is currently underway? As you say there are so many potential causes. Atrophy is not unique to ALS by any means. It is a sign that something is significantly wrong if the doctors see it too. sometines it takes a lot of time for even the best doctors to arrive at a diagnosis and it is very hard to be that patient.
A lot of your symptoms seem to be sensory so that along with normal emgs make me think it is likely something else. What do the doctors say?
 

humronan

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I am new to posting and I just sent a response. Did you receive that Nikki?
 

Nikki J

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No. Did you try to send a private message? I do not think you can do that yet. Best to reply on this thread. That will also allow other members to try to help you
 

humronan

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Thanks Nikki for the response and taking the time to read my story. Sorry if I am responding again. I am trying to figure this posting and responding out. Yes I am in the middle of getting a diagnostic work up. I did two test today. One to test vibration and heat, and the other for autonomic neuropathy. The one thing we noticed today is that I have a little bit of labored breathing when i am laying on my back. I have noticed this more and more recently as my other symptoms have increased. I feel very blessed and relieved a bit to now be at the Mayo Clinic, but at the same time I am having a hard time getting the thoughts out of my head that my symptoms are ALS or another MND disease. Seeing and feeling the atrophy is a bit freaky even though I haven't shown any clinical weakness. Is it possible to have ALS with twitches and atrophy but no clinical weakness yet? I am pretty sure at this rate I will show some weakness depending on what I have. Also I guess seeing that I have mildly increased insertional activity in essentially all muscles examined but was otherwise normal on my EMG. Thanks again for your time.
 

Vincent

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Just to allay any fears you may have, I can't remember how many times or how many ways I was asked; Do you have any pain? Pain is a good thing because ALS does not cause pain in the early going. It does show up later from Immobile joints and contractures. Having pain and normal EMGs are very good news. On an EMG the doctor can see abnormalities before you would notice symptoms. It doesn't mean you have nothing wrong, it just means it isn't ALS.
Vincent
 

humronan

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Hi Vincent. Thank you for taking the time to read my story and offer me feedback. I do feel comfort knowing that the type of pain I have been having is very unusual to be associated with ALS along with some of my other symptoms. I am just worried about the random muscle twitches I have been having for about 9 months now that I have started to see symmetrical atrophy at multiple spots on my body. The way I could describe it is that where my muscles meet my bones the tendons have become tough and stringy. Like the muscle is slowly pulling away from that area. So now my ankles, wrists, knees and elbows are all slowing wasting away. In your opinion does this type of muscle atrophy sound like ALS atrophy? I see my neurologist on Monday to go over the results of some of the tests that I took and I am a bit nervous because I think this time he will be able to notice some of the atrophy after I point it out. Thank you again for your kindness and I wish you nothing but the best as you fight this horrible disease!
 

Atsugi

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I my mind, it's not atrophy unless a doctor says it is. If your atrophy is so miner that a doctor doesn't notice it, it doesn't sound very important.

Neither are twitches a pointer toward ALS. There are lots of conditions that twitch. Healthy people can twitch.

EMGs are an "early warning system." This is because the electrical system between your brain and your muscle must be under attack first, before your muscle will be affected. So you won't notice any symptoms at first, while ALS is eating away your nerves. An EMG will pick up this electrical problem, well before you notice any symptoms. If your EMGs are normal, then there is no ALS.

Perhaps you might see some clues in my wife's experience with ALS. At first, her foot failed to support her, and she fell over. Then, her same leg grew exceptionally weak and she needed a cane to walk. There was no sensory clue, no "feeling weak" or exhaustion or burning feeling, pins, needles or weird feeling. No feeling at all. The muscle just no longer worked.

We began to notice twitching in her arms. We learned from watching this that the twitching muscle was the one losing its nerve, and that one would soon be paralyzed, limp, useless. Once the muscle was paralyzed, there could be no twitching in it, of course. Since ALS works in a serial fashion, one limb at a time, she never had twitching "all over" She only twitched in the next muscle to be paralyzed.

Months later, after she was immobile, her legs seemed "smoother" and we saw that she had no muscle tone. This was atrophy. Some people who have had ALS for a very long time have described atrophy to me as "I look like a concentration camp survivor." Note that my wife's atrophy came only after the muscle had been unable to work for some time.

The only pain she felt was as a result of being unable to move. Her legs swelled painfully. Her joints, unmoved for some weeks, froze up and were painful.

Do you see this in yourself?
 
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humronan

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Hi Atsugi,

First off thank you for your time to reply, I greatly appreciate it! What you described about your wife doesn't sound like my situation at all. I have read a lot that what you are describing is more typical that the muscle just stops working. So far all my muscles are still working, they are just becoming more fatigued and where my joints are becoming very boney if that makes sense. My lower leg muscles and forearm muscles feel very soft so my bones are more prominent. What I find interesting and can't' figure out is the areas of my body (hands, forearms, and outside lower leg muscles) that began with tightness and soreness have over time become soft and are the areas that I see the muscle wasting. One symptom that I have had for a few years is very sensitive nerves where by taping parts of my body it sends shocks down the nerves. I feel like my nervous system is short circuiting and firing jolts throughout my body, sometimes causing pain.

I am comforted that I have had 2 clean EMGs except that they noticed mild increased insertional activity in all my muscles. Are you familiar with those types of results for an EMG? The doctors at Mayo are currently looking to see if I have some small fiber neuropathy, but besides that I am in limbo.

Thank you again for your time and knowledge! It means so much not only to me but many who come to this board.
 

Atsugi

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You're good to go, Humronan. There's no ALS going on in you. From your first post to your last, you've been describing something else entirely. You haven't described anything that would make me worry about ALS.

I can't diagnose you, since I'm not a doctor, but I'm really very confident that ALS is not in your future. I base this on every sentence you wrote. One sentence, where you wrote "one symptom I have had for a few years..." is just like icing on the cake. If any of your symptoms were caused by ALS a "few" years ago, then the odds are that you would dead by now, or at least terribly disabled. Plus, you said they noticed increased insertional activity in ALL your muscles. But the new onset of ALS doesn't affect all muscles at once.

Finally, even after 9 months of twitching, you still don't have the one premier hallmark symptom of ALS: true persistent weakness. You didn't mention being unable to button a shirt, or tripping, or drop foot. The type of weakness in ALS is not the usual kind where you try a task, like going up stairs, and then after a few times, it's harder to do so. Instead, ALS weakness is more like my foot started dragging today. It drags all day. It will always drag, forever, from then on.

Your doctors have told you it's not ALS, and I think it's time we believe them. So between now and Monday, don't worry about ALS.
 

humronan

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Thank you again Atsugi! I will take your advice and not worry until I know what I have going on. I will report back after my meeting with my neurologist on Monday to update as to what they think I have in order to help those out in the future.

Much thanks again!
 
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