Update On My Situation - Just Had EMG

[BlueIris]

Congratulations!

[Carys]

Gosh that proves all those doctors wrong doesn't it, all those PCPs and neurological specialists including the one who gave you the RECENT clear EMG, everyone on here and everyone in real life. You had at least three false starts on the ALS over the years, at least 3 times you were convinced you had it with all the associated symptoms and many threads where you told us about your conviction, but to think this time you surely must be right. You've diagnosed your own muscle atrophy, well done, and to think that nobody believed you! Im not surprised you are so upset about it - I mean it was only the last day of October when you started this relatively cheerful and realistic thread and posted the words below and 2 months later you have atrophied muscles, that is so quick a progression.

Today I had the NCV + EMG and both were totally normal. The neurologist said I do not have anything like ALS and ALS is very obvious on an EMG.

Well, do pop back and let us know how your treatment is going for ALS some time, and how your care package is going of course and how you are getting on with the assistive technology and progression of the illness.

[BlueIris]

Aw, Carys, don't be mean? His dearest wish just came true!

NB: I will happily show some compassion towards this user when he displays one single instance of it towards others.

[pulisa]

Everything comes to those who wait for their diagnosis...And at long last you have one even if it's self-confirmed.

No need to see any other doctor now after all the tests and procedures you have been through.

[Murphy93]

Well, I've just discovered my left hand is actually atrophied on the back. The muscle on the back side of my hand between my thumb and index finger... it's a large bulge when I squeeze my thumb to my index finger on my right hand. However, on my left hand it's a much smaller prominence. Like literally 1/2 the size of my right hand. I am right handed, but I would not expect to see such a large difference between those muscles. My left hand is the one that has had most of the twitching. My left index finger is still twitching today... which, surprise, the twitch is coming from this muscle that I think is atrophied. I can see the twitch fire and it kinda makes my finger move side to side a bit.

This is a very depressing development in my story and honestly does confirm to me I have ALS. I had an unusual presentation at the beginning but now it's starting to look like more of a normal case... Atrophy, twitching, etc.

Hi Darkside

It seems like you are in a bad bad place at the moment and I wanted to reach out because I am struggling big time with the same worry.

I am a year down the line and still sick with worry - it’s taken over my life and I have never felt so worthless at this moment in time

However you have had a clean emg there is nothing much clearer than that.

Can you still use this hand ? If so you are fine

I think we need to get into our heads what this disease actually is , we are also getting advice from members with first hand experience of this disease who are being totally selfless in providing re assurance ( which I will be forever grateful for )

Perhaps speaking to your doctor about these thoughts? I have an appointment Thursday morning and I am going to admit defeat .

I don’t want to spend another year checking my body - strength testing etc it is mentally exhausting! And I bet you don’t either!

[MyNameIsTerry]

Hi Darkside

It seems like you are in a bad bad place at the moment and I wanted to reach out because I am struggling big time with the same worry.

I am a year down the line and still sick with worry - it’s taken over my life and I have never felt so worthless at this moment in time

However you have had a clean emg there is nothing much clearer than that.

Can you still use this hand ? If so you are fine

I think we need to get into our heads what this disease actually is , we are also getting advice from members with first hand experience of this disease who are being totally selfless in providing re assurance ( which I will be forever grateful for )

Perhaps speaking to your doctor about these thoughts? I have an appointment Thursday morning and I am going to admit defeat .

I don’t want to spend another year checking my body - strength testing etc it is mentally exhausting! And I bet you don’t either!

This is the big difference, you are willing to entertain this not being what your fear is telling you. You are willing to accept the possibility you need treatment for your mental health. Darkside won't even think about it. He has tried meds in the past and gave up very quickly due to side effects and forgot all about that fleeting moment where he must have accepted he had a mental health problem.

This stands you in good stead, you are over the first big hurdle in HA. The next is getting working on it and you are about to start that.

Sadly, Darkside is a prime example of why private medical care can be bad. His GP must be incompetent beyond words to not have realised this is about anxiety within a visit or two. The only other possibility is he/she is happy to file the insurance claims and buy the next new Merc.

[darkside4k]

Hi Darkside

It seems like you are in a bad bad place at the moment and I wanted to reach out because I am struggling big time with the same worry.

I am a year down the line and still sick with worry - it’s taken over my life and I have never felt so worthless at this moment in time

However you have had a clean emg there is nothing much clearer than that.

Can you still use this hand ? If so you are fine

I think we need to get into our heads what this disease actually is , we are also getting advice from members with first hand experience of this disease who are being totally selfless in providing re assurance ( which I will be forever grateful for )

Perhaps speaking to your doctor about these thoughts? I have an appointment Thursday morning and I am going to admit defeat .

I don’t want to spend another year checking my body - strength testing etc it is mentally exhausting! And I bet you don’t either!

Thanks for the kind words. I just am truly in a dark place after discovering my first dorsal interosseous muscle on my left hand is smaller than my right. Actually quite a bit smaller to be honest. That combined with the twitching in that muscle is confirming ALS in my mind. I have atrophy. I have the twitching to match it. I really thought I was over the ALS hump after my clean EMG in my right shin. My right shin has been the most consistently sore and stiff over the last 4 months of any muscle in my body.

But, this hand thing is concerning. I've been twitching in that finger off and on for weeks and the twitches are right in that muscle that looks atrophied. Everything seems to match up with ALS. First atrophy. Then, twitching, etc.

[Murphy93]

Thanks for the supportive words Terry I have never felt so low than what I have done with this stupid fear but I am determined not to let it defeat me. Even if I have to go on meds my life would be a hell of a lot better than how I am living it now.

[MyNameIsTerry]

Thanks for the supportive words Terry I have never felt so low than what I have done with this stupid fear but I am determined not to let it defeat me. Even if I have to go on meds my life would be a hell of a lot better than how I am living it now.

It's whatever it takes and however long it takes, gaining the rest if your life back is what is most important. People here will support you through it Murphy. Meds can take the edge off so you can start moving forward tackling the demons through therapeutic methods when before it seemed impossible so there is no reason not to ask for a little extra support to get you there.

[Murphy93]

Oh I hope so it’s so nice to hear things like that I life myself I find this fear consumes me at night very much so