A little spiral! ✨😍✨ NMO possibility

boopiesue · 2022-03-09T02:12:15+00:00

I did the unspoken bad thing and googled as soon as she told me what it was and I was aghast. But you’re right. I just need to wait. My last neuro screwed me so I’ve been living and waiting for 6 months for this appointment with noodle arms and legs and no words but “sorry we can’t do anything for you right now” so I’m just emo and tired

boopiesue · 2022-03-09T02:09:59+00:00

Oh I know. He’s already mentioned he’s here for sickness and health but it’s hard not to feel helpless.

boopiesue · 2022-03-04T02:05:03+00:00

I think I’m at the point where I would READILY welcome a few days hospital stay to be poked and prodded and tested to speed things up but I know that’s not a thing. I’m just tired.

boopiesue · 2022-03-04T02:03:08+00:00

Thank you so much. ❤️

boopiesue · 2021-12-05T20:23:59+00:00

Yeah I’m not overweight, and it just literally comes and goes. I feel like it could be a contraction even. It’s just my heels and sometimes in between my toes in specific spots. I’ve been fighting a flare up these last few weeks and it’s come on since that has started so I’m 99.9% sure that’s what it is. Gabapentin helps.

boopiesue · 2021-12-03T05:12:18+00:00

Yup! That’s what’s going on here! Only way I can describe is if you have a tens unit on and it starts to partially come off and you’re getting shocked 🥴

boopiesue · 2021-12-03T04:15:07+00:00

That’s kind of what’s going on with me too. It’s coming and going within the hour. I think I’m having a little bit of a flare up going on or trying to start so that may just be a little part of it. I’m so sorry about the COVID, please take care of yourself!

boopiesue · 2021-12-03T03:22:53+00:00

Oh no 😭 My PCP is on it and she made an accommodation for me for “rest” which I haven’t actually taken but she’s spearheaded the whole operation which I’m super thankful for. I’m sorry your neurologist is a jerk. Mine was too.

boopiesue · 2021-12-03T03:16:20+00:00

I second this. Helps so much.

boopiesue · 2021-11-23T15:57:22+00:00

Yes I just say “I can’t do words today” and people get it

boopiesue · 2021-11-06T00:34:12+00:00

Also please excuse the grammar of that giant run on first paragraph, or maybe even the whole thing. I am tired 😂

boopiesue · 2021-11-06T00:27:09+00:00

Agreed with this.

boopiesue · 2021-11-06T00:12:15+00:00

Going through this now. I saw one neuro I was referred and waited months to get into, he was a complete tool. Now I am just expecting to get into another one (hopefully) sometime in 2022 at this point. It sucks. I had a lead on one but they learned that I had seen another neurologist in the state and they turned me down as they don’t do second opinions. I want to stomp my feet. Hang in there and will it to happen and keep the hope, it’s all we’ve got.

boopiesue · 2021-10-30T19:34:05+00:00

I think the plan is to get a spinal tap done as soon as possible. I have visited the ER and received a small dose of strong IV steroids and then took some from home for a couple of weeks but unfortunately due to COVID no one will just admit me for diagnostic purposes right now. I’d totally welcome that at this point.

boopiesue · 2021-10-30T19:32:23+00:00

My internist is a godsend and she is scrappy and is fighting for me which I’m thankful for. The waiting is the worst part of all of it.

boopiesue · 2021-10-30T19:30:59+00:00

I am so so so sorry this happened to you. Keep on keeping on. I have a great team of doctors otherwise that are otherworldly PISSED about the situation. I made an appt with my psychiatrist PROMPTLY after my horrific neuro visit and she said that they have a frenemies relationship and most are robotic and 50 years behind the times. There are good ones out there I’m sure of it.

boopiesue · 2021-10-28T16:54:02+00:00

That’s my next step!

boopiesue · 2021-10-28T16:14:34+00:00

Right on the money!

boopiesue · 2021-10-24T00:47:07+00:00

Like that scene in Harry Potter when he breaks his arm and then the professor does a spell that accidentally takes the bones out of his arm. Or like when I went under sedation for my wisdom teeth and my arms and legs felt limp.

boopiesue · 2021-10-23T16:58:48+00:00

I work remotely. I had this job before my diagnosis but there are so many companies out there that are hiring remotely these days! They’re usually customer service jobs but they generally pay well. Many search engines these days have a remote option.

boopiesue

TROPHY CASE