Sudden Bulbar symptoms?

[ahurlbut]

Hi,

I have had a lot of strange health stuff going on for 6 months, episodes of racing heart, feeling very unwell, been tested for just about everything and everything normal. MS and ALS became concerns recently when numbness and tingling and limb weakness started to play into it. I had on neuro exam with an orthopedic surgeon (we were looking at my MRIs) who said that I had hyper reflexes and Hoffman's sign and needed to go back to neuro because it could mean upper motor neuron problem. So I freaked out for 2 weeks went to neuro and he said my exam was normal and that I have normal brisk reflexes and he saw no Hoffman Sign. They told me "You do not have MS or ALS." They put me on Amitriptyline for the nerve issues.

A little over a week after that appointment I started having difficulty swallowing, very dry mouth, but not just that - a feeling there was something at the back of my throat, like mucus, but nothing there. At night it is about 10x worse and at times I feel my airway is blocked and I wake with heart racing and taking a big breath.

Now what just started and is really scaring me is that my lip and cheek muscles do not seem to have much strength. I cannot suck my cheeks in like I have been able to do without effort my whole life. This is terrifying me and I just realized it this morning. I can't make "fish lips." My lip and cheek muscles do not seem to be working right. Do these sound like bulbar symptoms? I am so terrified. Thank you.

 

[lgelb]

TCAs can cause weakness in themselves, and definitely dry mouth/throat/heart rhythm issues, and I'm not clear on why you were put on one. I would consider tapering off under the care of an internist who can explore systemic reasons for your symptoms.

Best,
Laurie

 

[ahurlbut]

Thank you so much, Laurie. I was VERY hesitant to go on Amitriptyline because I avoid medicine unless absolutely necessary - especially since we have been trying to find the cause of my issues for 7 months now.

I saw my neuro about 2 months ago and he said my neruo exam was normal and with normal MRIs and my symptoms being more sensory at the time they did not know what was going on with me - sort of idiopathic neuropathy/paresthesia - and said try Amitriptyline to see if it helps with numbness and tingling.

My gut was telling me NOT to take it, so I didn't. Had a terrible December where I couldn't lie down without limbs getting very numb, slept sitting up etc. Went back to neuro he said my exam was normal and I did not have MS or ALS (but I did not have these muscle issues at that time) and to start taking the medicine now. I felt relatively "bullied" into taking it and had been feeling so awful that I started it. Been on it 2 weeks (only 25mg and then for 3 nights took half a pill cut because of trouble swallowing that had started) and stopped just last night. Really only just noticed these muscle problems in my face - around upper lip, nostrils, and cheeks, yesterday and today.

He said I didn't need to taper because I was on such a low dose. Oye. I knew taking meds would compound this already confusing constellation of symptoms. : (

 

[Atsugi]

If you don't trust your neuro, see another. Before changing doses of meds, see a doctor.

 

[ahurlbut]

Thanks. I feel like I trust him, but my fear of all of these symptoms has me second guessing everything. Each appointment he had an attending come in and assess me as well. I talked to him both times about med changes...he said it was ok to take half a pill and then said I did not need to taper from the 12.5 mg and could stop...

 

[lgelb]

Yes, that is a very low dose and he is right that tapering is not required.

But it seems time to go back to the diagnostic drawing board, and, as I say, with an internist rather than the neuro. I would consider everything from nutritional imbalance to inappropriate sinus tachycardia; both can cause the constellation of symptoms that you describe.

 

[ahurlbut]

thanks again Laurie. Yes, we keep going back to the drawing board. My internist told me last time I saw her that she had no idea what was going on with me and couldn't help me - as I sat there in tears. And yelled at me for going to other doctors. It was awful. So, need to find a new primary...they have tested me for literally everything. I did start seeing a Naturopath within the last month to take that perspective (hormonal/nutritional imbalance etc) and am seeing an Environmental doc in early Feb who specializes in Lyme Disease to see if he can offer a different perspective. Thank you so much for your time and thoughts. : )

 

[Atsugi]

The Naturopath is worse than a waste of time and money.

OK, ahurlbut, I reconsidered everything you wrote in all your posts and I'm glad you gave good details. You've seen different kinds of doctors and basically been turned away by all of them. It's time to see somebody with a whole new tool box.

ALS is a disease in the brain that destroys motor nerves in the brain and brain stem (in the back of your neck). Neurologists are the first kind of doctor that understand how the brain affects the body.

The other kind of doctor who understand the brain is a psychiatrist. And I'm not saying you're nuts or "it's all in your head." I'm saying that I have found psychiatrists to be the most generally smartest doctors around.

Don't confuse a psychiatrist with a psychologist. The psychiatrist holds an MD: much better. Prepare to pay big bucks for the first appointment, but it will be worth it.

 

[ahurlbut]

Weakness and Twitching

I posted before about bulbar symptoms (soft palate low and a few other things) and The other day I started getting twitches that I can see in my calves and quads, maybe 6 or so different ones that are still happening sporadically, and feel some occasionally other places as well (arms). Then a couple of days later I noticed that my muscles, like body wide, were shaking and very tired with very little exertion. Even feel the shakiness when I lift my phone etc. I can still donnormal things it's just that I feel very weak and shake tremendously. I started Zoloft because my anxiety over thinking I have ALS has gotten debilitating. Does this type of weaknesss (shaking, burning, heavy) sound like ALS weakness? I read the stickies and feel like maybe it is perceived weakness but there are comments about true shaking happening because of true muscle weakness. Thank you

 

[Atsugi]

Hi, ahurlbut.

First, please stay in your original thread. Otherwise, it's extra work on the mods.

You are right to say this is perceived weakness. You're perceiving the weakness, yes?

In true ALS weakness, the motor nerve doesn't send the go signal to the muscle, so it doesn't work any more, ever. There's no tiredness, no feeling of weakness, the muscle just doesn't go.

Have you seen a GP yet?


I'm still not seeing ALS in there.

 

[ahurlbut]

Ok thank so much for moving this post back to my original. Appreciate it. I have read Some posts about people experiencing weakness first and then eventually getting diagnosed with ALS that made me very nervous that this was the beginning of my muscles dying. They are incredibly
Shaky when I try to do small things. But, I can still do things. Just worried that eventually they will get so weak I won't be able to. I am going to go to therapist because of my anxiety over all of this and am still seeing neuro with these new symptoms. Also investigating Lyme...thank you so much for your time

 

[ahurlbut]

Oh and of course when the twitching started just a couple of days before he shaking I was certain that was a symptom of ALS

 

[Atsugi]

Oh and of course when the twitching started just a couple of days before he shaking I was certain that was a symptom of ALS

But it isn't. Good luck chasing this down, whatever it is.

 

[ahurlbut]

I woke up this morning with another symptom - three fingers on left hand feeling stiff/stuck. Was able to move them around pretty quickly and then didn't bother me again until after cutting some chicken for soup - was trying to pick up parseley and the knuckles ont hose 3 fingers locked up at the top knuckle and only bent there and made it hard to pick it up. I can move them around now but they kind of lock up and get stiff very easily. Does this happen with ALS?

 

[Atsugi]

No ahurlbut, that's not ALS.
You've seen different kinds of doctors and basically been turned away by all of them. What are trying to tell you?
Go see a psychiatrist to look for an explanation.