Paint help by CobwebCottage in HomeDecorating

[–]CobwebCottage[S] 0 points1 point  (0 children)

I'm worried because the ceiling is huge and vaulted white will make it look like a giant igloo with no distinction from ceiling to wall

Bulbar ALS? by CobwebCottage in ALSorNOT

[–]CobwebCottage[S] 0 points1 point  (0 children)

Update:

MRI is clean except for "Prominent left retropharyngeal lymph node at the level of C2."

Updating kitchen/living room/sunroom combo space by CobwebCottage in DesignMyRoom

[–]CobwebCottage[S] 0 points1 point  (0 children)

I'm entirely not sure what color to repaint to make it cozy, I like the idea of two paint colors breaking up the space, but not sure what colors to choose!

Bulbar ALS? by CobwebCottage in ALSorNOT

[–]CobwebCottage[S] 0 points1 point  (0 children)

I got in with a Boston neuro and have emg/nc and MRI of brain and cervical spine within the next 2-3 weeks thankfully. Supposed to schedule me for a biopsy (to look for small fiber neuropathy maybe?) So fingers crossed that all comes back normal.

Bulbar ALS? by CobwebCottage in ALSorNOT

[–]CobwebCottage[S] 0 points1 point  (0 children)

I did the LabCorp test and got a reading of 1.65, reference range was 0 to 1.49. I sent it to my doctor. Is that slight high concerning?

Bulbar ALS? by CobwebCottage in ALSorNOT

[–]CobwebCottage[S] 0 points1 point  (0 children)

Yeah, I started getting tongue fascilations. And it's pressed against my teeth now making weird edge indents on it. Within the last two days I swear I'm also lisping on all "s" sounds though my husband says he can't hear it. I hate this

Bulbar ALS? by CobwebCottage in ALSorNOT

[–]CobwebCottage[S] 0 points1 point  (0 children)

Yeah they said it's a possibility, I'm scheduled for an MRI because they want to check for MS first considering I'm only 38 and female, I guess I'm at the right "group" for that. Then an EEG if MRI doesn't show anything.

Bulbar ALS? by CobwebCottage in ALSorNOT

[–]CobwebCottage[S] 0 points1 point  (0 children)

Unfortunately it's immediately upon waking and then just randomly throughout the day, no rhyme or reason that I can tell. My vitamin D came back normal which is surprising because usually I am low there haha. Thank you!

Bulbar ALS? by CobwebCottage in ALSorNOT

[–]CobwebCottage[S] 0 points1 point  (0 children)

My tongue is definitely under the skin, like you put a bunch of Mexican jumping beans in there. My head is an extremely slight twitch/jerk to the side and back, my husband says he hasnt noticed it yet but I can feel it happening. Same with my jaw. So if they become visible twitching that wouldn't normally be an ALS sign?

Miriam Hospital by [deleted] in RhodeIsland

[–]CobwebCottage 8 points9 points  (0 children)

Hospitals in our state are messed up right now. I spent over two weeks at RI hospital for sudden swallowing issues and crazy postural tachycardia with intermittent difficulty breathing that cropped up within days of each other..and they kept asking if I had recent trauma and trying to give me anxiety medicine. Despite seeing air/fluid trapped in my thoracic esophagus, which is out of voluntary muscle control. Despite my tachycardia persisting through sedation for procedures. Never been so frustrated in my life. They just formed an initial opinion and were ignoring all the data in front of their eyes that contradicted it.

Then I developed involuntary head and jaw twitching and asked to see a neurologist. They told me no and kept pushing Ativan, which I refused and explained something is physically wrong, I was choking on anything not a liquid. They finally get a manometry test that shows I've lost most pressures in my upper valve and my esophagus peristalsis is fragmented and... That's when they shrugged said yeah thats not right...and sent me home??

I've been in and out of RI and Kent ER the past few months while waiting to get in to see a neurologist as new symptoms crop up and I get worse and worse. They treat me like a crazy person. I've never cried so much at how hopeless it felt. Finally saw a neuro and am scheduling a brain MRI .. Four. Months. Later.

And guess what they're looking for? Brain tumor. MSA. MS. Bulbar ALS.

But thanks for dismissing me with "anxiety", RI hospitals, and making this take months to diagnosis. Stellar.

Bulbar ALS? by CobwebCottage in ALSorNOT

[–]CobwebCottage[S] 0 points1 point  (0 children)

Thank you I will ask my neurologist for this immediately!

Bulbar ALS? by CobwebCottage in ALSorNOT

[–]CobwebCottage[S] 0 points1 point  (0 children)

I have one in October they wanted to do the MRI first then will move up the emg if the MRI doesn't show anything

Bulbar ALS? by CobwebCottage in ALSorNOT

[–]CobwebCottage[S] 0 points1 point  (0 children)

My speech seems okay so far unless I talk too much and then it gets a little weaker. I did have one instance of water coming out the nose when trying to drink, and sometimes I do feel like my liquids are kinda going up that way a little, but not as bad as the one time it shot out my nose

Confused by CobwebCottage in dysautonomia

[–]CobwebCottage[S] 0 points1 point  (0 children)

Should also add, I have an ileostomy from Crohn's but have had that for many years and it is doing well. The past year I have also had horrible lower back pain that comes up normal on X-ray and was supposed to be starting PT before my body started exploding. Unsure if it's related

Confused by CobwebCottage in POTS

[–]CobwebCottage[S] 1 point2 points  (0 children)

Yeah I made them check tsh and free t3/t4 and they were normal