My original post was deleted and was titled, “your thoughts would help”

[Ajay2017]

Update on my situation for anyone who may have been experiencing something similar. My original post was deleted and was titled, “your thoughts would help”…

I took a year from doctors visits to see if things would go away and unfortunately nothing has changed. Nothing has gotten worse and nothing has gotten better. I had a follow up visit yesterday and here was the doctors note.

“Mr. Macon is a 28 y.o. male who presents for a follow up visit for muscle twitching and various other symptoms. He reports that he has not gotten any better or worse since his last visit which was over a year ago. He describes muscle twitching all throughout his body but particularly in his legs. He states that the muscle twitching is constant throughout the day. His legs feel weak and he experiences leg soreness as well. He reports a recent numbing sensation and twitching in his face and lips. He continues to feel as though there is something in his throat particularly while drinking or eating. He has noticed that his voice is raspy and has noticed frequent hiccups and burping. His sleep quality has also been affected and he reports that he has not been able to sleep well for the last 18 months. He denies headaches. He states that nothing has made the symptoms better or worse. He is not currently taking any medications for the symptoms. He reports that his ability to perform his daily activities has been significantly impacted by his symptoms.”

 

[Ajay2017]

3+ patellar reflexes bilaterally. 2+ everywhere else

 

[ShiftKicker]

Hi Ajay,

Your thread was not deleted. It can be found here: Your thoughts would help. Threads close automatically after a certain period of inactivity.

It appears you are still under the care of a doctor. What have they said are next steps? It's not clear what you are asking for on this forum, as it is clear from your posts that there is no progression and you are experiencing non ALS symptoms such as sensory and digestive issues.

 

[Ajay2017]

Thanks for the reply. Honestly I’m not necessarily looking for an answer here, I’ve just been following people’s post who’s had similar issues or symptoms. I know I’ve seen a lot of PALs who have had an onset similar to mine and people who have these symptoms who were not AlS patients so I’ve just following various people up here and wanted to update mine in case anyone out there was having something similar. Apologies if I am inappropriately still posting on the forum. My next step is a lumbar puncture next month. The Neuro suspects he will get nothing from it as he believes my gad65 positive was a false positive. He said he will look into Mg if it does come back negative.

Thank you

 

[Ajay2017]

Results came back for my lumbar puncture. Sadly everything came back normal. My neurologist seems to have no other suggestions for testing. Therefore I ask you all (because you all have seen a lot of cases come to the forum) is there anything else I should ask to look into (he usually ask me what do I think we should do next because he is perplexed).I am kind of worried about PLS or UMN type of onset due to my hyper reflexes in patellar tendon, he also noted cross adduction reflex being present as well (which I read was almost never benign). Any thoughts would help, thanks

 

[ShiftKicker]

Hi there-

Once again, your reported experience is not how ALS develops. Your questions are better asked with your neurologist as this forum exists solely to assist/support those affected by a diagnosis of ALS and to provide some general info to people who are beginning their search. You really have tapped the resources here as much as possible. If your neuro does not have the answers, it's reasonable to ask them to refer you to a larger centre. We certainly can't provide you the answers you seek here, our experience is with MND and you have been pretty comprehensively cleared of that. Unfortunately there are sometimes long waits to get answers with rarer or unusual neuro issues. You may have better luck in one of the undiagnosed neuro groups on FaceBook.

 

[lgelb]

I would track your sleep and consider a sleep study. Lite versions can even be ordered DTC these days.

Looking at the notes, the running theme is kind of hypervigilance (not saying everything is in your head, it's a real biological phenomenon), which takes time to crack because it feeds on itself.

But I do think working on sleep, nutrition, bodywork and something that takes you outside yourself (volunteering, nature, dating, the arts, sports, meditation, whatever floats your boat) could help break that cycle. And you could also work with a primary care clinician (NP, PA, MD, whatever) on updating your labs and other wellness care.

 

[Ajay2017]

I believe it’s the way it’s typed out and the way I’m explaining it that makes everything seem frantic and panicked. I’m actually not as frantic as it seems through text. I think it’s because the two neuros I’ve seen don’t really explain much verbally to me. I end up looking at notes and having to put them in my own words and do my own research. For example, I seen a neuromuscular specialist after the autoimmune one referred me and he never mentioned to me that I had cross adductor reflex nor what it would mean. His notes act as if it’s not important and it’s only mentioned in a chart and not in his “next step” or observation paragraphs. My symptoms also came on very quickly which causes me to explain them in a “all over the place” kind of format, because the symptoms were all over the place as well. With everything almost being ruled out including MG, I wonder what he will suggest. He kind of tossed his arms up and shrugged when we talked about the next steps If the lumbar puncture came back normal (which it did). I’ll take your advice and ask about getting those things done as well though. Thank you

Why not mention you spotted possible UMN dysfunction in your “assessment and plan” with 3+ patellar with crossed adduction and a mute babinski?

 

[ShiftKicker]

Ajay, we really can't provide you the kind of answers you are looking for here. You have been cleared of ALS quite comprehensively. Please understand that this forum simply isn't the place to find what you are looking for. Laurie has given you some advice- it is time to return to your gp to address the issues she brings up. Your final sentence in the above post indicates you have questions to ask your neuro- start there, as we can not possibly know what your neuro is thinking. Until then, please refrain from posting here.

 

[lgelb]

A mute Babinski is normal!

As for high tone in your knees, that is a nothing-burger in and of itself. Reflexes come and go and are subject to stress and much more. You might as well say, you had a headache, someone hit your forehead, and you flinched. So there was no "possible UMN dysfunction" to report on.

The A&P is to summarize what's important and what needs to happen next. An incidental finding that doesn't synch up with anything else doesn't make the cut.