Any help or advice?

[Tb12]

Hi guys,

30 year old male with symptoms spanning 4-5 years - most noticeably 3 years.

Including:
Twitching all over
Tremors of muscles under stress
Tremor in hands outstretched
Stiffness
Joint pain
Muscle pain/tingles/pinch like cramps and occasional Charlie horse cramp.
Mucus in throat I can't clear and having swallow a few times to get all food down on occasion- don't choke - just annoying and bad heart burn and reflux.
Some balance issues
Get out of breath easy



I have had 3-4 emgs in the first 2 years of my symptoms
I had one single fibre emg that was suggestive of chronic denervation but wanted further testing

And then the next 3 emgs showed no denervation or any abnormalities so they were all clean done on all four limbs.

All clinical exams have bern normal, the last neuro actually monitored me for a year and said I don't need to see you anymore I don't think this is neurological ..

After 5 years even tho I still have symptoms and feel a little worse ..
Would ALS be easy for a dr to see after 5 years of symptoms? Would I have a lot more sever symptoms after 3-5 years?

I can still walk and talk and even go to the gym but not as strong and feel as healthy as I once did..

Any advice would be great..

 

[affected]

Hi Trent,

I've read back very carefully over all your past threads here.

I'm an aussie mate so I'm going to be really blunt OK?

4-5 years and you still have no hallmark symptoms of ALS. EVERY PALS (or the PALS of every CALS) who replied to your previous threads are no longer with us. THAT is ALS.
Please make sure this time you only use this single thread, if you make more threads they will be deleted by the mods. It would be well worth reading our stickies as they are not the ones that were around in 2013 and we spent a lot of time and effort creating them and we stick by everything in them.

Because ALS is a disease that attacks the motor neurones you don't feel less healthy, you don't really feel much of anything in the early stages, you just simply can't do things anymore.

You however still feel lots of things, and yet you remain able to do things. This is the big thing that takes ALS off your radar.

The EMG will show up ALS in areas of your body you didn't even know were affected yet, so if you had ALS your EMG would have picked it up. After a year of monitoring a neurologist told you that you don't have a neurological disease.

Please read the sticky and you will see that while you do obviously have something bothering you as you have a list of things going on, ALS is not indicated by any of them.
This is great news, and I would suggest you go back to your GP and ask what kind of testing should be happening now, what speciality you should see and head in that direction.

All the best, we really can't say much more as this is purely an ALS support site.

 

[Tb12]

Hi Tillie,

Thank you so much for taking your time out to message/reply to me, it means a lot. I had a good read over the stickies and it put my mind at more ease than it had been previous to your post and me reading the stickies.

What lead me back to this forum is a neuro geneticist suspected I may have kennedys disease which would have made sense to me but after a 3 month wait for results it came back negative which obviously has flared my concerns for ALS again..

One thing I am worried about and maybe you could shed some light on, is some posts on this board have said that it took them years to get a diagnosis? Would that mean my symptoms may still lead to ALS or were there symptoms really severe even while trying to get a diagnosis?

My symptoms have progressed over 4 years, however after 4 years if it was of ALS nature would I be in a lot worse of condition? And would a dr and or even the most non ALS knowledgable neurologist be able to see there is a serious problem?

I really appreciate you taking your time, I am alone and don't have anyone to discuss this with

 

[lgelb]

TB,
Tillie said it. Heed her words. You don't have ALS.

The people who literally take "years" to get diagnosed have issues with access to and competence of care, by and large. And a few that the question is upper neuron disease vs. upper + lower vs. lower.

Pure and simple, they can't do physical things that you can clearly do. It is quite different. You have nothing to fear.

Pending feeling quite a bit worse than "a little," I would look to physiotherapy, massage, a hot tub, a nature walk, and finding someone so that you are not [which seems an issue for you] alone. Be out in the world. Don't hide in worry. Find a better GP if you cannot confide in yours. And be tested for H. pylori if not as yet.

The first step is acknowledging that it is through your own efforts that you can and should feel better.

Best,
Laurie

 

[Tb12]

Hi Laurie..

Thanks for the quick reply, it means a lot and I will take your advice and look to seek other support and help

Just a quick question, why did you suggest H. Pylori? I actually was tested for that only a few months ago as I have a array of stomach issues but it came back normal, just curious as to why you mentioned that?

 

[lgelb]

Asked and answered -- stomach issues.
And BTW reflux, etc. can easily manifest as pain/discomfort elsewhere.

 

[Tb12]

Thanks for your reply Laurie, means a lot I'll keep looking into other avenues.

 

[Tb12]

I went to the gym today to attempt to do weights and my chest and arms were tremoring just trying to hold 20-40kg's

Today my ribs and chest are in so much pain, my arms didn't give out or drop the weight but my back, shoulders,chest, arms were just tremoring like crazy...

Really worried.

 

[Nikki J]

You have been answered here and at TDI as well. We have nothing more to say to you than was already said. Your doctors don't seem to think it is ALS either. please work with your doctors and move on from this forum

 

[Tb12]

Hey guys,

I just want to say a huge thank you to all of you who has Messaged me over years on this board

Today I saw a neuro muscular specialist, who also spend time in a USA Mayo clinic and he did a emg test of my Lowe legs, right arm and right cheek looking for bulbar signs and everything came back normal and clinical was fine.

He ruled out
MND/ALS
Myasthenia gravis
Neuromytonia
Even said I didn't have enough emg evidence suggestive of cramp fasciculation syndrome

Yes I have twitches and yes my strength has diminished and I tremor at the slightest effort but I think now after 4 years of symptoms and a clean emg of both upper and lower mnd muscles the only think that would make me question ALS again would be my obvious health anxiety.

Now it's on to looking into other health issues causing my troubling symptoms

I'm going to ask one silly question but If I don't my anxiety will rare it's ugly head..

Does it matter how hard you flex your muscle during a emg for them to see something? Because the needle hurt so much sometimes I don't flex as hard as I could but obviously I flex a little because the machine makes a noise on my movement.

 

[Atsugi]

It doesn't matter.

Tb, trust the expert. You're not the first person to get an EMG. A neurologist knows the difference.

 

[Green Queen]

Agree with Mike as saying it doesn't matter.
If it makes you feel better when I have had EMGs done I CAN'T flex anything...

All the best for sorting your issues. I'm very happy for you that so many terrible things have been ruled out.

Janelle x

 

[Tb12]

Thank you Janelle,

It made me feel a lot of comfort.

I recently found out a friend of mines dad passed from ALS, I'm going to do the walk for MND fundraiser next time around, anything I can do to help for a chance at ending this condition, it's the least I can.

 

[Tb12]

Does the fact the neurologist tested my cheeks mean that I can also not worry about possible UMN bulbar issues?

 

[Nikki J]

Upper motor neuron issues are found on physical exam. If your exam was normal then you do not have umn issues. If you had a facial EMG that was testing LMN issues and yes the fact it was normal is good. I hope you give this up and move on. I am close to shutting this thread down quite honestly. But if you going to be spending more energy on this ( don't ! treat your anxiety instead!) at least educate yourself as to the difference between umn and lmn
Thanks for planning to do an MND walk
Good luck in addressing your real issue