Back again-still concerned

[Milloman]

Hi -Sorry to post yet again but I am still very concerned, my symptoms have persisted and I also have some new ones and looking for advice.

I was not impressed with the first Neurologist I saw and she discharged me even though I had very real and visible symptoms, Stomach twitching (constantly) left ankle and leg thinner than right(1/2 inch) ,constant twitching in left calf ,random twitches all over body,breathless upon exertion -she discharged me saying I was suffering with anxiety and that I needed to see a Psychiatrist!.

I decided to go Private route and booked to see another Neurologist and saw him 4 days before Christmas , he agreed that my legs were different in shape and size,and also that my left hand/wrist/forearm was smaller but he was not that concerned and said he does not see MND/ALS but did say I have got something going on that needs to be got to the bottom of ,he then said that the diagnosis that is most probable is FND.

I looked this up and yes I have a lot of the symptoms but their is one symptom I have which casts doubts in my mind and that is the size difference of Hand/arm/leg/ankle , I am finding when I walk the pain in my back is immense ,he again put the back pain down to FND.

He has requested that I have and EMG and Lung function tests done again ,I had an EMG done with previous Neuro which showed up a problem with left arm/hand and was told caused by Ulnar nerve ,the 2nd Neuro has dismissed this diagnosis but I am confused now as to what it could be -my question is and what I am looking for advice on is what muscles can be tested on an EMG ,I am really concerned about the 24/7 stomach twitching and I also get although not constant what appears to be twitching in the chest area too but feels more like palpitations ,one more thing I awake in the night and cannot feel my left hand ,it is numb but gradually I do get sensation back albeit not my ring finger or pinkie .

I am sorry to bother you guys and gals but just need right advice as this has been going on for over a year now ,I have been twitching in stomach and left calf for 8 months and just need to know what is going on -and need to know what questions to ask when have EMG done -what muscles etc -Many thanks to all you wonderous people

 

[Atsugi]

Couple things, Millioman:

I re-read all your posts. Still not seeing any reason to think of ALS.

Keep in mind that ALS is a brain disease of the nerves that run the voluntary movement muscles.

The questions you need to ask when you go for the EMG are 1) If we find something that may or may not be of consequence, will I spend time and money chasing down a disease that I'll never get? And also, ask: 2) While we're spending time and money looking for ALS, aren't we wasting time and money that we could be getting the real problem fix.

You need to see the shrink. Your anxiety is out of control.

 

[Milloman]

Thanks for your reply Mike and I take on board what you say however the 2nd Neurologist has requested for me to have EMG and Lung function tests and said I defo have something going on although he doesn't see MND/ALS based on Clinical test he gave me and he also doesn't see atrophy but I defo feel like I am compromised when walking and also using left hand(I am right handed btw) and I feel there is a weakness on left side even though he didn't detect any -I was just looking for advice that is all as had a year now of not feeling right and symptoms progressing

 

[ShiftKicker]

It's a bit difficult for folks to provide you advice for this, given you have been cleared of ALS. This forum is for people with ALS/MND. It's definitely not a general health advice forum or diagnosis forum. While the replies you have received seem abrupt, the issue is in the fact you have been cleared of ALS but continue to solicit advice and comfort from people who have ALS and who are struggling with their own burden.

We sincerely wish you well in your diagnostic search.

 

[Milloman]

Ok-point taken many thanks for your words Mike and Shiftkicker ,it is not my intention to cause any harm or offence to people with this horrendous disease ,was just looking for advice but hopefully I will not have to return to this forum if EMG and Lung function tests do not point in direction of what I fear-Thanks again and best wishes to all .Andy

 

[Milloman]

Ok one other point which seems to be conflicting on the forum - is there pain with ALS/MND or not , I have constant pain in both legs and left arm and hand and breathless too which causes pain in middle of chest ,some knowledgeable people on here say no pain and others say there is -confusing?

 

[Bestfriends14]

You've been cleared of ALS. Please stop with your questions and respect the people of this forum.

Take care and good luck on your diagnostic journey.

 

[Milloman]

I totally respect the people on this Forum , I was just enquiring as I have considerable pain and read conflicting posts with posts saying no pain as symptom and others with pain as a symptom - I CERTAINLY AM NOT LOOKING TO DISRESPECT ANYBODY AT ALL ,I have been put forward for a further EMG and Lung function tests by my New Neurologist based on my symptoms so am still concerned obviously as had 12 months of symptoms getting worse and varied -Sorry again if I disrespected anybody!!!!

 

[GregK]

Pain is NOT a primary symptom of ALS.
In early stages pain can come from cramps.

Now take the hint and go away until you've had your second EMG.

We are either suffering from ALS or tied up caring for ALS patients, and you're blatantly and thoughtlessly wasting our precious time.
Think about it.

 

[Milloman]

Thank you for your answer Greg -I am outta here!