Symptoms, Advice, and Opinions on Treatments

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Oct 8, 2022
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Hello everyone! Just concerned about various symptoms and wanted to know your advice and opinions. I know this looks like a long post, but any input to some of my questions regarding ALS would mean the world to me!

I just want to start off by saying that I have utmost respect for the moderators and PALS in this forum that respond diligently and with kindness to almost every post on this particular thread. I know it's probably tedious to see the same type of message over and over again, so I really commend you all on staying strong and providing comfort to those who need it. You all are superheroes.

Anyways, any help/suggestions for what I should expect from my symptoms would be greatly appreciated.

I'm a 22 year old university student with history of C. Diff Colitis, generalized numbness around the whole body, and moderate Dermatillomania (bear with me, this might be important later). Over the last couple of weeks, I've been feeling sudden onset tremors and muscle fasciculations, mainly in both my lower limbs. My quadricep muscles especially twitch when I "engage them", and make a weird "rolling" movement when I'm squatting or going up a staircase. Only weakness I can feel is going up and down the stairs, where I get a bit "wobbly". Went to my PCP and we conducted MRI's of the brain and spine, which came back normal with bits of degeneration in some areas of my spine and a singular unspecified lesion in my brain, but no immediate suggestion of demyelination anywhere. Afterwards, he refers me to a neurologist for further testing. Here's the catch: I've been to the neurologist before about a year ago for these same 'dizziness and vertigo' issues, and he did complete nerve conduction test and found everything normal except for one area in both my quadriceps. I told him I worked out my legs a lot, which the neurologist then said, "Oh, that probably explains it" and his best diagnosis was that it was POTS. I can't go back to that same neurologist since they moved to the other side of the country, and a "new patient" neurology appointment takes months! Scheduled a neurology appointment for mid-November, but the anxiety these symptoms are causing makes me question if I can even mentally make it to next month while worrying so much! The anxiety keeps me awake all night sometimes...

So, I mentioned before that I had generalized numbness throughout my whole body, which came and has been persisting ever since I was going through a severe C. Diff infection two years ago. Which makes me think that this all might be MS, just somehow without substantial evidence of demyelination (need a spinal tap to really make sure), since apparently numbness is rare for ALS patients. My first question is: have any of you seen or know of PALS stories in which they had both ALS and general numbness? Is it a prevalent symptom, or once in a blue moon? A more important question: Once you start feeling paralysis in limbs, do they retain their feeling / sensitivity?

And lastly, how have you all personally dealt with anxiety? As PALS or caregivers/family members, do you have any advice for managing health anxiety, especially relating to ALS? Do any of you recommend going to services like therapy? I found that there are almost no options in my area for therapists that deal with "health anxiety", which I found surprising, so have any of you found a way to find mental health professionals that deal specifically with health anxiety? I would love to know. Any input or suggestions are appreciated. In the meantime, I've been drinking a ton of chamomile tea to try and keep the nervousness down, but that doesn't seem to work... :$

I know that as a 22 year old, my chances of getting ALS are the same as getting hit by lightning, but these symptoms are really getting to my head. Any opinions on my symptoms are greatly appreciated! I've also been reading a lot about the work of Dr. Richard Bedlack, and I'm wondering your thoughts on his work as well. His Theracumin trial seems to have been completed already, but no finalized report has come out yet. Hopefully it comes soon.

Thanks and stay strong everyone!
If you had MS with issues as you describe, hard to imagine a clean MRI. No, paralysis in ALS does not cause numbness as you describe. The sensory neurons are not affected as they are in MS, spinal cord injury, etc. Quad weakness bilaterally makes me think of a slowly-progressing adult-oset myopathy if anything, or simple deconditioning/poor sleep/diet/hydration/stress as is fairly common these days. C Diff can certainly sap your strength and I would be looking for a PT regimen to see if the legs can be stronger in a rehab context. Your PCP can refer you for evaluation.

From what you've said, I'd expect the neuro visit to be again reassuring, but you don't need a specialist in health anxiety to seek counseling from. Most mental health professionals can deal with it, and address the dermatillomania as well. The trick is finding someone with the right fit. No time like the present to start the hunt -- get referrals from your social network -- you can just tell people "anxiety," very common in these times. Often your campus counseling center maintains a list or may even have someone you click with.

You should not be reading about Dr. Bedlack's research or really anything regarding ALS because it will only feed your fears. Focus on what is in front of you. It's not ALS or anything like it. It's feeling better so you can study, work, play, as your best self.

My advice, get help with the anxiety now, when that is subsiding substantially, see what true physical stuff remains.
Block this site and all ALS sites.
I truly wish you the best, but please don't continue here.
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