Recent content by Avarice

Until the disease decides for you, it can't hurt to get the wheelchair. It's not like using it at all times is mandatory on its arrival.

I have bulbar onset too. I first noticed slurred speech in Oct 2015, along with profound weakness in my right arm. bt the time I was diagnosed june 2016, speech was largely gone. I wish I had advice for coping. I've been left to figure and deal on my own. While I have a power chair, I...

That is amazing. Mine provided a cough assist machine and a motorized chair. The chair has sat in the garage unused for 2 months as halls and doorways here are too narrow in this house. So I may have someone call them to pick it up and loan to someone that can make better use of it, esp after...

Thank you so much. My experience seemed so different. While in the ER they tried to at least consider other things, since then doctors seemed pretty focused on ALS. And maybe that's because the symptoms are pretty unmistakable. But there had never been tests or talk of testing anything else...

Funny you mention that. Every GP and the neurologist have all dismissed the idea of even testing for Lyme. I mentioned having a rash at one point that resembled the EM rash that's associated with Lyme. But unless I can tell them I was playing with deer, there's been zero interest in even...

I have my father calling the ALS clinic tomorrow. They do already have a case number for me, but the one that coordinates appointments was off early on friday. I'm not even sure how to categorize my onset. The mouth symptoms and the weakness in my right arm came on at the same time.

Update: The neurologist ran an EMG, he stopped after testing my left arm and leg. He never gave me any specific info beyond saying the results were consistent with ALS. Per the advise given, we're working with the UCSD ALG Clinic to get a second opinion. But it was certainly a major...

Going to my GP's office tomorrow (or Monday if they're closed) with a note to request that referral. Thank you so much! Also, should I mentally question this a bit that he's that confident it is indeed ALS before even running an EMG?

Hi Nikki. If the EMG confirms his opinion, I'll be asking my GP to refer me to the UCSD ALS Center. It was where I was supposed to go before I had switched GPs. He never tested my breathing. Only things he did himself was test strength and reflexes of my limbs and extremities, then checked...

Update: finally got to see a neurologist today. Not good news at all. Based on the info I gave, on the MRI and observations from the ER, as well as his physical exam of my weakness, he's certain I have ALS. The EMG is being done next Friday, but he believes because of the severity of my...

Thank you, AP1981 I am definitely writing everything beforehand. My speech has deteriorated so badly, I no longer speak at all. The throat can still make sounds, but I just haven't been able to form words that anyone can discern in well over a month. Basically had to write everything before...

You got clean EMGs, plural at that. If you're seeing specialists where they run actual tests that yield results that say it can't be this, be grateful for that miracle. You were given a very thoughtful response on the CNS and that your issues could be the result of several other causes. The...

Thank you kindly! I guess it's been a frightening couple weeks. A more pronounced brain fog that comes and goes, along with every muscle feeling more like lead. BUT good to know I shouldn't worry about it progressing so fast as to kill me before the appointment.

I'm still waiting for an appointment with a neurologist, which won't happen until the end of June. My symptoms started early November when friends started asking if I'd been drinking due to increasingly slurring speech. I also noticed profuse saliva when I would sneeze. By January, the...

Hi Laurie, Ultimately, if it does go in that direction, I'd like to get a referral to UCSD. Next step at this point for me is getting a primary care doctor to refer me to a neurologist who can do an EMG, and can work with Medi-Cal.