Another neuro update

[concernedman]

Hi all,

Just wanted to post a new update.

I meet my neuro the other day and he did all the tests: reflexes, walking on heels and toes, look into my eyes with flashlight, holding my arms in front of body. Did no strenght tests at all and that is concerning since on of the symptom is my shoulder that have been progressevly been weaker since 18 month and confirmed atrophy in shoulder area by physio but guess he did felt he didnt med to test it anyhow.

So with this, with all my initial symptoms persistent and new symptoms has occured since the start it leaves me without answers but I guess Im cleared from ALS even though its hard to believe its something else.

What do you think? What have I left to do? Have seen the neuro, primary Care, ER, physio, therapy and god knows what.

Should I still be worried??

All the best,
Peter

 

[dldugan]

Relax and if things get worse get back to Physician. Make certain you write all of your symptoms done if you go back to neurologist. It is easy to miss one they would find useful.

 

[KarenNWendyn]

You’ve been coming here for two years. You have had clean EMGs.

Your neurologist examined you. Even though it didn’t seem to you he was testing strength, a trained neurologist does it by watching you get up and down, stand on your toes, holding arms out in front of your body, etc.

All that, two years of symptoms, clean EMGs.

No ALS here. You are officially cleared. No need to keep posting here. Congratulations.

 

[Bestfriends14]

CM,

I'm not sure what else you are looking for. You've been cleared 20 different ways of ALS for 2 years now. Perhaps it's time to let go of ALS and perhaps seek counselling. In all honesty, that's what should be top of your list. Enough already of posting here. It's doing nothing for you (since you don't listen anyway) and is only feeding your health anxiety.

Good luck to you in the future

 

[ShiftKicker]

Mod note- for past posts, please read here:

https://www.alsforums.com/forum/do-...ymptoms-getting-worse-please-some-advice.html
https://www.alsforums.com/forum/do-i-have-als-als/40604-update-worrisome-progression.html
https://www.alsforums.com/forum/do-i-have-als-als/41738-update-symptoms-since-oct-2016-a.html


Peter,

You have been coming here for over a year. You have reported symptoms going on for at least 2 years. You have seen multiple neurologists and doctors. You have had at least 2 emgs, several scans and a variety of blood tests. You have been informed by the many people here who have taken the time to answer you- some of who are medical professionals themselves, and ALL of whom are experienced, that your pattern of reported symptoms do not fit a recognizable pattern of ALS. You were just told by another neurologist "No ALS", but you are returning here again.

Here's the thing, there is not much anyone here can do except repeat what you have been told before. It does not look like ALS. Keep working with the doctors, etc, etc. This advice will not change. No one is saying you don't have anything wrong, but that it does not appear to be ALS. This forum is for those with ALS and their caregivers. The primary focus is to support those people. It is not set up to be a health anxiety or unknown disease self diagnosis/support forum. The people are not equipped. As the https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html states, this forum is limited in what it can do for people once they have been answered.

I suggest you very carefully read the last section of the link above and understand why you are now, after your many many posts and the exceeding informative and patient replies, receiving less than patient answers and have already had one thread closed by a moderator. The people here can sympathize, but can be of no further help, nor should they be asked to continue providing emotional support and time when you really should be seeking in person medical advice from your doctors. This forum is definitely not to be used as a continued general medical resource, as you are doing now. We all understand how hard finding a diagnosis can be, but folks with ALS and their caregivers should not be leaned on for help once you have been cleared of that disease.

Please take care and continue following the advice and direction of your doctors.