10 years of symptoms. Now potential ALS

[jram303]

Hello,

I came here initially when I started to have fasciculations and other issues back in 2015. (past threads: here, here, here, and here) For the last ten years I have lived with a slow progression of severe cramping, delayed muscle release, and as of one year now, bulbar symptoms (swallowing issues, now voice problems recently breathlessness when lying on back). Cramping and swallowing over last three months have gotten severe.

I had an emg done yesterday that showed fasiculations in my arm and leg and hand. I told the tech about my swallowing issues, and he didn’t test these muscles. I’m confounded why not. He then told me he suspects CFS, but due to another Abnormality on emg (not sure what exactly) it could be ALS. But he tried to assure my by saying I would be dead by now if it was ALS, so try to hope for the best. Has anyone had such a long state of slow progression that eventually developed into bulbar issues before limb? Even if fasics in limbs were first symptom?

Thanks in advance.

Curious to see if anyone had an opinion on this at all. It’s been hard advocating for myself. Even with 4 misdiagnosed conditions (cancer 3 times, pulmonary embolism a year ago). FND has been blamed. And as far as CFS, I was told it’s not progressive, while my symptoms have definitely progressed since my initial symptoms in 2015.

 

[ShiftKicker]

It would be helpful to know what the EMG recorded- do you have the results?

 

[jram303]

I don’t have the report unfortunately. Test was done Tuesday. Not sure how long before it will be in my files. He said fasiculation was noted in all muscle groups. I asked if he noticed fibs, or muaps, or anything of that nature, and he said no. He said if this was mnd I would have been dead years ago. Really hate that answer. As we know this is not the case. I have a friend diagnosed in their thirties that is still alive 8 years in. Lmn dominant.

 

[ShiftKicker]

What does your current neuro say? What other recent tests have been done to assess for your current issues? Have you seen an ENT?

 

[jram303]

the current neuro told me FND a year ago. The neuro that did my emg Tuesday just told me I would be dead if I had symptoms for this long. Looking to get referral to ent now. Had swallow test done when I first noticed globus, food debris in throat a year ago. They were normal. Neuro Tuesday said I have cramp Fasiculation syndrome. But swallowing issues doesn’t seem to be a symptom of that.

 

[jram303]

Curious if any pals have had such a long disease course (ten years) that started with global fasics and then just settled into bulbar without clinical weakness anywhere else in the body.

 

[ShiftKicker]

This doesn't sound like the usual course for any type of ALS, let alone bulbar. Not saying you don't have something wrong, but you may be doing yourself a disservice by focusing on ALS here. If you are struggling with swallowing, an ENT would be able to identify what the issue might be and provide info for either your neuro to follow up on or to direct further diagnostic inquiries.

While it may seem counterintuitive to you, have you sought care for the FND diagnosis? Someone well versed in the condition could easily provide more information and help sort out whether this was, indeed an appropriate diagnosis or if there is an overlay that is causing some difficulties in teasing out organic symptoms.

 

[jram303]

Thank you so much for all of your amazing insight and suggestions. I can’t tell you how grateful I am for your time.

I do agree, it would be “atypical” for this to present like this. I think at this point of being seriously ill for 16 years, I’m tired. ALS would not be ideal. But I’d like just some answers. Uncertainty is definitely my biggest enemy. Chemo and treatment was always the easy part for me. Just knowing. Yanno??

Doing lots of work with CBT and other methods to help with FND. See an FND specialist. So pursuing all available routes. Family doc on Mindy to request ENT appointment. Truly. Your time means so much. All insight is welcome, and greatly appreciated.

 

[jram303]

So just recieved my EMG and NCV. It notes only fasiculations. With complex fasiculations in my left fdi muscle. From what I can tell, this only happens with ALS. And nothing else. Yet they say in the report nothing about this being of concern. Hoping to get some insight here. As anything online just says complex fasics are a ooor prognostic factor for ALS.

 

[Nikki J]

You did not report any chronic denervation which would be seen in als. Complex fasciculations are a little controversial but worst interpretation they are considered a sign of acute denervation like fibs or psws. We see people here not infrequently with isolated fibs or psws. They don’t seem to end up with als so I doubt you will either. Please talk to your doctor and get their take though.

 

[jram303]

Thank you very much for your insight in the matter Nikki. It is much appreciated. Yes. As far as the report says, no chronic nerve signs. Just the complex fasics and regular fasics seen. I imagine not many folks have symptoms for ten years before diagnosis like this is made. But I could be wrong.

 

[lgelb]

You are correct about the 10 years. ALS is considered "relentlessly progressive" and even in slower versions, would not have an EMG like this a decade in. If you have difficulty breathing on your back, I would suggest talking with your neuro or GP about a sleep study.

 

[jram303]

Thank you so much for your time and your response. Truly. All of you are a knowledgeable and thoughtful group. I know I would be a case study to make it this long to just now start deteriorating or having bulbar onset dominant issues. I’m told CFS doesn’t progress, but my symptoms absolutely have.

I will ask about the study absolutely. Great place to go next. I know that when I wake up in the morning my blood pressure is dangerously low. 60/40. Not sure if there is a correlation with breathing problems and such.

 

[lgelb]

There could be -- heart and/or lungs can play in like that.