Insights welcome- starting the journey to diagnosis

[WorriedDeb]

I just spent the afternoon at the ER.. it all started about 2 months ago with fasciculations on the right side of my neck, no other symptoms until about a month ago I developed random electric like shock sensations and random muscle pain. The last week I have had a tight burning sensation in the front of my neck. It feels like the muscle or tissue is very tight maybe a spasm. Left now with a lump type feeling in my throat. Very scary. It wakes me up out of a sleep. I had a CT scan today and I have an EMG scheduled for July 6. I am a mother of 2 and terrified. I had a great uncle with ALS. My lab work has all been normal as was my CT. Thanks for your thoughts.

 

[Vincent]

Random electric shocks sounds more like MS than ALS. Keep working with your neurologist and see how things go. A great uncle with ALS and no one else sounds more like sporadic than familial ALS. Try to relax, there are lots of less lethal things it could be.

Vincent

 

[Atsugi]

Deb, I have no idea why you are concerned about ALS. Nothing you wrote is ALS.

Let your GP medical doctor determine how to diagnose and treat you.

Take heart, though. You didn't write anything that would make me think about ALS.

 

[WorriedDeb]

Thank you very much for your response. My symptoms seem to change daily and are really scary. I know I am getting weaker as evidenced by trying to do daily activities. I have burning/warm feeling in my back and struggle to have good posture. My tongue is starting to feel strange and I have no desire to eat. I feel like things are progressing very rapidly. Every day seems to be a little worse. I know this isn't a classic presentation, but every day I feel more certain that it is bulbar als. I have read accounts of people who presented with the fasciculations first. As more blood tests come back normal, that eliminates 1 more thing.

 

[WorriedDeb]

I have fasciculations in both my calves and thrust and some in my face and other places as well. I appreciate the positive thoughts though.

 

[WorriedDeb]

I have early bulbar als symptoms

I posted earlier, but feel I know what it is. I started with only throat fasciculations in early May. Then had random sharp pains and muscle cramps and widespread fasciculations. Now fasciculations primarily in throat and now trunk and back. I have muscle fatigue in my arms and 2 fingers that want to lock up on my right hand. Now have lump feeling in thrust and throat clearing and theoat discomfort and fatigue with excessive talking. EMG July 6. Not looking forward to it.

 

[ShiftKicker]

Mod note: Merged threads. Please do not start another thread.

 

[WorriedDeb]

Sorry, wasn't sure.

 

[WorriedDeb]

I know it's bulbar . Too many symptoms to ignore. Throat and tongue issues, difficulty talking and swallowing words get caught in my throat, this am brief episode of right foot drop, resolved, but scared about what won't work tomorrow. My fingers lock up. I've read many accounts right here in these forums of people who had fasciculations first and also who had normal EMG then eventual diagnosis of als. So normal EMG means nothing. I'm very sensitive and in touch with my body, so I think all these strange symptoms were just precursors to the nerve and muscle death. I'm progressing really fast and I'm terrified my care needs will drain my family finances before I even get diagnosed. I am worse every day. I wish I were wrong, but impossible to ignore how many symptoms point in that direction. Running out of other possibilities. My hope is gone. I fear I won't be around long enough for my neurology apt next week. Sorry, had to get that out.

 

[ShiftKicker]

Normal EMGs absolutely DO mean something. While I can't say either way whether you will make it to next week or not, it won't be ALS that's going to kill you in the intervening days. If you think ALS is going to finish you off within the next 7 days, an EMG would have detected such an advanced stage of the disease. You hyperbolic statement does you no favours here.

EMGs do detect ALS. If you are reading that EMGs did not detect LMN signs, but someone had an eventual diagnosis, very carefully examine the rest of the posts for whichever person you are thinking of. Each time in those cases, a neurologist has stated there is something detected, they suspect, there are odd findings and pathological reflexes, there are clinical signs of an issue, etc, etc. Not one person came here said an EMG did not detect their disease and then they drop dead within the week. EMGs confirm what neurologists already suspect. You have stated what symptoms you are struggling with and feel, but you have not stated what your doctors are telling you.

 

[WorriedDeb]

My doctors are both new to me. I think the first time my pcp saw me she did think ALS , she had a student with her and she told her that she had diagnosed it before. She did a neuro exam , which I passed , but the strength tests they do could be passed by a fly. Then I got an EMG on July 6, which the neurologist told me at the apt was normal. She did not do any exam, only the EMG and the needle test. This was only performed on my right arm and leg and right sternocleidomastoid. She said she did not see evidence of ALS, but I've had much more decline since then . I have weakened voice now and some swallowing difficulties. I have fasciculations and cramping in my throat. I'm afraid to talk too much as it is taxing and I don't know how many words I have left. Since my throat is where this all started , it makes sense that this will go first. I had brief right foot drop yesterday and increased weakness throughout. My back aches. My fasciculations have slowed down but have been a tell tale sign for me as to which muscles are going to weaken next. Every day I wake up is worse than the one before. I have a neurology apt on July 25th and my pop won't order any more tests until then. So, each day I get more symptoms that seem to tell me not only ALS, but bulbar ALS. Believe me I don't want to be right about this, but I'm running out of reasons to believe otherwise.

 

[Lixen]

No one here is going to validate your irrational fear of ALS absent any clinical findings including the professional medical opinions of the MD's who have evaluated you. You have not described symptoms consistent with the presentation of ALS despite your steadfast belief otherwise. Not one.‎

If you don't believe the medical professionals, the diagnostic test results and those with first hand experience, it appears you've got your mind made up. There's nothing anyone here can say or do for you.

 

[WorriedDeb]

I could believe them if I could get more testing and if they made a statement from more than 10! minutes time with me. Seems to be too much coincidence that fasciculations started only in my throat then we're widespread and now having speaking and swallowing issues. Hard to believe it is anything else less devastating. Sorry, I appreciate your thoughts, but I'm a nurse and can't ignore what I'm feeling./reading. I wish I could. I have read dtories of PALS who describe exactly my scenario. I think I'm early in the disease , so a neuro exam by a general practitioner isn't going to catch it.

 

[Angiegal]

For someone who titled their post "insights welcome", you seem to be pretty set in your thinking pattern.
As someone coming from the medical profession (I think I read that you were a nurse), wouldn't you suggest to someone with these issues to follow the advice of their PCP not self-diagnose?

Just curious

Angie

 

[WorriedDeb]

It's just frustrating when I seem to be getting worse, but the process for getting any testing is soooo slow. The throat symptoms are the scariest and most bothersome. I had s great day yesterday with hardly any symptoms then woke up this morning with my same throat concerns and fasciculations and general awful feeling.
Very hard not to self diagnose when you are just waiting and getting worse. Talking is very very taxing. I will try to relax and see what the neurologist says Tuesday. Then swallow study Thursday.