Als or anxiety or something else .. scared momma

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Note your prior thread was not removed as you stated in the title of your second thread and it was open. I have merged them
 
Als is most certainly not the most common neurodegenerative disease. You believe it is more common than Alzheimer’s, Parkinson’s and MS to name 3? I do not. It is close to MS true but not more common.

ALS is the most common of the motor neuron diseases but that is not because ALS is common but the others are rare.

Like Alzheimer’s and PD the risk of ALS increases with age too
 
Your symptoms do not sound like ALS. You have had multiple docs examine you including a neurologist and he did not find clinical weakness or cause to think you have ALS. Clearly you have other health concerns, but ALS does not sound like it is on that list. Keep working with your docs, but this isn't the place for you and that is a good thing.
Best wishes,
Tracy
 
ALS is not "the most common neurodegenerative disease in the US." Heard of Alzheimer's, Parkinson's...?

You've presented no reasons to worry about ALS. You are addressing the issues that you seem to have appropriately (weight loss and BP control are obviously biggies). CRP is a non-specific test and does not change our opinion, which is evidently shared by multiple docs, that you don't have a neurological disease.

Honestly, your weight alone can explain some of your symptoms. It's the first thing I would focus on, as it's likely a contributor to your most serious risks for disability (like a stroke or heart attack). By focusing your worry on what you don't have, you are bypassing what you do. Anxiety can be exacerbated by fluctuating BP and vice versa, so I hope you go on an appropriate anti-hypertensive soon (not sure why it requires a cardiologist to do this).

If it takes a new medical team to tackle this, find one. But that is not going to be here.

Best,
Laurie
 
For the record, CRP and ESR, both tests for inflammation, can be elevated in people who are overweight but otherwise healthy.
 
Thank you all for your replies .. I guess I’m just so frustrated I did get a new doctor I see her on Friday mostly because it’s been a year and they all say there is something going on but they don’t know what and it is becoming life altering .. do any of you know how I can request a spinal mri because the doctor I am seeing will not give me a referral for one even tho by accident an X-ray captured some spondylosis in my neck.
 
Your knowledge has its origins in your perceptions.

You wrote…

“Everyone says that ALS is very rare but I am reading it is the most common
neurodegenerative disease in the US."

The internet (Dr. Google) is becoming so overwhelmed with misinformation
it’s once helpful usefulness is being threatened.

Your concerns of having ALS came by looking up something and
finding something else on the way that really doesn’t apply… which
is now apparent you can’t let go of.

You also wrote…

“I have always been a well grounded person and I have a hard time thinking all of this
could be a constant state of anxiety cause that would literally mean I am in a constant
state of anxiety.”

Yes… it can.

Hope a doctor helps you to a path of stable health so you can fully enjoy your
family… and life without burdening health concerns.
 
Update to my issues . Still having breathing difficulties 2 normal pfts and still having swallowing difficulties even after esophageal widening I can still drink liquids with no issue. My sleep study came back normal as well as my b12, magnesium and vitamin d. I have an appt to do a stress test as well as a 30 day event monitor. I am still having some weakness in my right leg as well as some twitching that seems to be body wide. Yes my tongue even twitches when I try to relax it.. it’s really frustrating to not have any idea what is happening to your body. My heart aches for those just waiting for the next body part to stop working. I honestly do not know what is going on with me.. yes als is a huge feat of mine mostly because I have received no answers and that seems to be a big thing in als blood work and everything else normal.. than why do I feel like this constantly starving for air even tho my pfts and xrays are normal why is eating dinner such a chore I take ten times longer than the rest of my family even with much less food I am so frustrated. My tongue is big most mornings which is odd but allergy meds help so hopefully that’s just an allergy thing . I’ve sought counseling nothing seems to be helping me. I’m a mental health counselor that is having severe issues and I don’t know what to do at this point. Can bulbar als present with difficulties swallowing and breathing difficulties with normal pft and tongue twitching .. ??
 
Again, even though the sleep study was normal, weight can make you breathe with more difficulty esp. when lying down, when breathing is most difficult. It can also cause/worsen reflux-like sensations that may make swallowing more noticeable. Reconsidering your diet esp. before bed can only help.

Tongue twitching is more likely allergies, dehydration, and/or anxiety than anything.

You don't have bulbar ALS, or any ALS. If it takes an EMG to get that across, go get one. But your statement that ALS is a big fear because not getting answers is characteristic of PALS during diagnosis is just nonsensical and if you dole out advice for a living, I would think you could see that.

So clearly your perspective is clouded, and if you need better counseling, get that too. Those here who are, in your words "just waiting for the next body part to stop working" cannot help you the way that you must help yourself.

Best,
Laurie
 
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