Follow up with doctor

[Bankerman93]

so ive had symptoms for 8 months now and now my doctor wants me to go back for MRI's to make sure they didn't miss anything, i don't think its looking good, i've had 8 months of symptoms but no failure yet, just breathing problems and feeling weak, and of course the twitches. I will update when i hear back


Thank you

 

[ShiftKicker]

Past threads here:

Shortness of breath (question)

So I've had multiple symptoms, but this being the scariest and my Nero had me do a Pulmonary Function Test, would that come back normal if my constant shortness of breath was from ALS? Thank you

www.alsforums.com

Emg results

Can't talk to the nuro about my results but email said unremarkable, anyone understand the read out?

www.alsforums.com

over 6 months of symptoms no answer

First i would like to thank everyone in this forum for providing there experiance and knowledge, and i hope for a cure soon. would also like to state that i have never had HA and my symptoms did not start with twitching. I won't make this a novel so here goes. Sept. Mild fatigue and felt i...

www.alsforums.com

 

[Bankerman93]

Just an update,bailed on the neck MRI until i can get meds to go in that machine and set still for 45 mins.I spoke to my doctor and said my testosterone levels were a little low, but other then the fatigue that i have doesn't match my on going symptoms of Weakness,Twitching,excessive saliva, breathing problems, Voice changes and others.

 

[Bankerman93]

Had an appointment today, Doctor still wants an MRI of my neck/brain done, also he wants an Echo test done on my heart for shortness of breath. getting more concerned about ALS because all my test keep coming back normal.

 

[KarenNWendyn]

You had a completely normal EMG back in April, so why are you worried about ALS?

Might as well find out what is wrong with you so you can fix it. But an ALS forum is not the place for you.

 

[Bankerman93]

Hi karen,

Thank you for the reply, i am actually a bit concerned mine is breathing onset, and i heard that type is difficulty to pick up on an emg, and with all these normal test i've had points towards it.

 

[KarenNWendyn]

Even with respiratory onset ALS, the denervation is widespread. So it would be picked up on EMG of the limbs.

 

[Nikki J]

You had normal pfts you said. They would not be normal with respiratory onset ALS. Laurie already told you that

 

[Bankerman93]

well had an echo test on my heart and it came back normal but still have breathing issues, and all my other symptoms, still waiting on an Mri, would an echo test be normal if i had respiratory als?

 

[KarenNWendyn]

It’s not a relevant question. Your normal PFTs already rule out respiratory ALS, and you already had a normal EMG of the limbs in April. I recommend ditching the idea of ALS altogether and working with your doctors to figure out what’s causing your symptoms.

The fact your cardiac echo is normal is good news in terms of ruling out any significant problem that can affect heart muscle or heart valves. It’s always nice to know you don’t have any heart failure, e.g. But there are many other possible reasons why you could have shortness of breath and a normal cardiac echo. Fortunately, with the normal PFTs and EMG results, ALS is not one of them.

 

[Bankerman93]

well got normal mri in and had a follow up today, the nero prescribed me pyridostigmine to see if it helps my brething and fatigue, also he went ahead in put me in for a referal to ku med. its not looking good

 

[KarenNWendyn]

You’ve already been cleared of ALS.
I don’t understand your comment “It’s not looking good”. What did the neurologist tell you?

 

[Bestfriends14]

Banker, you've been clear more than a couple of times of ALS. What obsessively brings you back to this forum? Your posts says "it's not looking good". Well, "it" is not ALS so really there is not one reason for you to continue to chase ALS, hoping for a diagnosis.

Banker, go live your life, give back to those less fortunate, and stop hoping for a terminal illness. Life is too short; be grateful that you don't belong here.

 

[Bankerman93]

You’ve already been cleared of ALS.
I don’t understand your comment “It’s not looking good”. What did the neurologist tell you?

he said try the mestinon and see if it works and if not he said maybe i need a second opinion because he said i'm clean on paper

 

[KarenNWendyn]

But he never said he was concerned about ALS.

Sometimes not having answers isn’t necessarily a bad thing. It means that seriously worrisome conditions have been ruled out (including ALS in your case).

The trial of Mestinon is to make sure he’s not missing Myasthenia Gravis.
If you don’t respond to Mestinon, don’t be surprised if he tells you to come back in 3-6 months. Again, that doesn’t imply ALS. It just means he hasn’t identified anything serious and just wants to keep an eye on you to rule out any evolving conditions.

There’s really not much more that people on this forum can say to you. Keep in mind that this forum is here primarily to support people dying of ALS and their caregivers as well as those who have lost loved ones to ALS.