Confused and concerned

[Xrayguy75]

Hello,

I have found this forum after a couple of recent visits to my PCP. I have symptoms that he says are concerning for motor neuron disease. ALS or anything like it were not on my radar at all, but of course now I’m concerned.

I’m a very active 48y/o male. Last fall I noticed a huge change in my balance while deer hunting from elevated stands. I have hunted all of my life and this has never been an issue. Also, at this time my family started telling me that I was chocking while eating and clearing my throat all of the time. At first I didn’t think a thing of it but they were correct. Last fall I also started noticing some memory issues and my wife also picked up on that change. I was also having muscle cramps in my right calf. With all of this in mind, we saw my PCP in December and he did a physical exam. Nothing too far out of the ordinary except that I couldn’t balance myself on one leg. He mentioned some possibilities, ALS being one. This hugely upset my wife, as she thought this was premature. He ordered a CT Head and a bunch of labs, all normal.

Over, the next month and a half some more things started happening. Number 1, I started paying more attention and I noticed muscle twitches happening all over, but mostly in legs and feet. This struck a memory that the first twitching I had was in my bicep last summer. Also, the cramping has spread to different areas of legs, feet and left hand. I also now have a slight tremor in my left hand. My left forearm is noticeably weaker than my right, but I can’t see any muscle loss. I really think this is due to some tendonitis in my left elbow. Also, concerning to me is my speech. I hear some slurring going on, but my wife says no. Another thing that has been happening is people are occasionally asking me to repeat myself because they can’t understand me, even though I think I’m speaking clearly. I can’t explain that. I also have noticed some instances where I can’t pronounce words properly. My balance is slightly worse and I find myself paying more attention to foot placement. I’ve only fallen once last November, first and only time and I chalk that up to happening before daylight in my woods. But, never happened before.

So, I don’t think I have ALS but my PCP diagnosed me with myopathy and is sending me to Neurology. He is concerned. I am near St. Louis and Washington University has an ALS clinic and I’m trying to get in to be seen there. Might be overkill, but if I start with a local neurologist I might end up going to St. Louis anyway. I already see a cardiologist at Wash U for coronary endothelial dysfunction.

I understand that playing Dr. Google is dangerous and I’m not going crazy, just gathering information. For every time 10 times I read that muscle cramps and spasms don’t mean anything, I find an ALS patient that says that was the first thing they noticed. It gets confusing, but I understand why. People panic and jump to conclusions and I’m trying not to do that. I’m just wondering if anyone on the forum has experienced symptoms like mine? I appreciate any input and I thank you in advance. I have read the “Read First” thread. Thanks

 

[Nikki J]

Myopathy is completely different disease than ALS I don’t think your pcp should be assigning labels as there isn’t enough data yet. When you get to the neurologist they can do a detailed history and exam and order tests based on that. Wash U has outstanding doctors. ALS clinics often won’t see you without more testing especially an emg It might be an idea to be seen by a more general neuro at Wash U then they could refer laterally to the appropriate department. If it is myopathy for example that would be a different department. It seems like you are reporting head to toe symptoms in a comparatively short time which tends to argue against ALS if you are still functioning

 

[Xrayguy75]

Thanks Nikki! Yes, the PCP gave myopathy on the referral to Neuro, but said in the notes that he’s concerned about MND. A little confusing to me. I called the ALS clinic yesterday afternoon to see what if they would see me without being seen by general neuro first, but it was after hours. I messaged my cardiologist at Wash U to see if he could get me in to be seen and I’m still waiting to hear back from him. I am still functioning but the speech issues are the most concerning to me. I can’t account for that. I haven’t fallen again, but I have to say that I have caught myself a few times to keep from falling. My balance and dexterity used to be excellent, not so much these days. I appreciate this forum!

 

[rmt]

I'm glad you are going to be seen Neurology. Hopefully they can put together a diagnostic/testing plan to figure out what is going on.

I'm not a doctor but I will say that my husband had bulbar ALS, which started with speech issues, and I noticed the slurring before he did. For a long time he thought he sounded normal but he very obviously did not. So your wife not noticing any speech changes is probably good. If you are getting self-concious when you speak to people, you may not be projecting as much and people might not hear or understand you. Your wife is probably the best person to assess any speech changes.

And if you notice your balance seems off, be careful! No matter what is causing that, you definely want to avoid a fall!

 

[Xrayguy75]

rmt, thanks for your kind and reassuring response. Since posting, I have had a few more dysarthria issues. I may just be hypersensitive to it, but I definitely feel a change in my speech.

I talked to Neurology at Washington University on Friday. They had the referral and want me to be seen by the movement clinic. The first available appointment is 2-26-25, yes ONE YEAR from now. I don’t see how that is possible when this department deals with people who potentially have life altering conditions. My Wash U cardiologist office says they will help to try to get the appointment moved, but I will probably have to start with the hospital system that I work for. Is it common for these types of specialty clinics to be booking that far out? I still can’t believe it.

 

[Xrayguy75]

Another update on Washington University. I called back to see if I could be seen in the Neuromuscular Department and got a huge run around. They insisted that they didn’t have the proper documentation in the referral and that it needed to be redone. As it turns out, no one bothered to read my doctors notes for the last visit where he plainly states that he’s concerned about NM disorder and that I need an EMG. So I’m waiting for the proper department to review and hopefully I can get in to be seen. Very, very frustrating…

 

[Xrayguy75]

One more update on getting in to see Neurology. I got a call from Washington University this evening and they got me scheduled to see Dr. Cindy Ly in the Neuromuscular Clinic on 2-29, just 2 weeks away. We are very relieved and feel like we are going to be seen in the correct department. Praying for good news. I’ll post an update after the appointment.

 

[Xrayguy75]

I wanted to give an update on the appointment I had at Wash U yesterday. I was seen by 2 doctors and given a very thorough physical exam and they took an extremely detailed history. Thankfully, the neuromuscular specialist Dr. Ly said that ALS is not on her radar. Surprisingly, she was not very concerned about the speech and cognitive issues that I’ve had. They gave me a preliminary diagnosis of Benign Fasciculation Syndrome and ordered a bunch of labs and then sent me over for an EMG. The EMG was positive for peripheral nerve hyperexcitability. I’ve never heard of that, but after looking it up it does seem to explain most of the muscle twitches and cramping. I will be interested to know what the Dr. has to say about that because apparently PNH is a separate diagnosis. Overall, we are very relieved.

After spending some time on this forum, I have to say that you all do a great job of helping people who are having some scary issues. Thanks for all you do!