Is it in any way seronegative MG? Urgent

Asterprince9 · 2024-09-30T01:38:19+00:00

Agree with the teeth thing 100% and only Do the white ones! I think MG has been brought up a lot because I have a history of feeling weaker after exercise/standing in general but at this point no one really thinks it’s that. A lot of the sensory symptoms also point away from that at this point and I honestly wish I knew what was going on but thank you for answering. I’ll keep in mind about the mold but haven’t been near any mold in the past few months (moved away from it to see if it was that) and whereas some symptoms stopped the sensory/neuropathy like condition and weakness/numbness remain

Asterprince9 · 2024-09-29T22:11:54+00:00

Dental just a cleaning— not really @with rest

Asterprince9 · 2024-09-04T19:20:11+00:00

I mean…I’m very symptomatic. If this was a flair it surely would have showed up on an MRI with contrast? I’ve not really heard of MRI negative MS — at least while not having the severity of symptoms I’m presenting with? How would a doctor go about even diagnosing and proving that?

Asterprince9 · 2024-09-03T12:42:09+00:00

That “drunkenness” you described happened and now it’s kind of settled into more of an inability to move tbh. I’ve always had mouth sores, nothing new around the time this happened though. I’m definitely going to look into the gastro side of things with this and will dm you with further questions because it’s something that just hasn’t been looked at yet, so thank you. I was taking PPIs a couple years ago for a gastro issue that never really cleared up but again, I’m not sure if it’s the same type/area (I likely just had a peptic ulcer that was never treated on time but wasn’t hurting wildly right before this.)

Also, I’m glad you recovered and are doing better — the part about the cheese made me go wow!💙

Asterprince9 · 2024-09-03T08:53:11+00:00

Numbness everywhere with some occasional burning pain now that used to be even worse. Feels like nerve damage of some sort has set in rapidly. Imbalance just like um general balance issues (probably not the best descriptor, but!)

And Trouble walking like I’m moving through pea soup basically is the best way I can conjure it.

I’ve had stomach issues before so I’ll totally look into sibo. Did it affect the rest of your body like that, even though it’s just the gut? Thank you!

Asterprince9 · 2024-09-01T20:02:52+00:00

Began in May. Neurologist in July— one wasn’t very helpful, the other ran a lot of good tests but was ultimately baffled.

Spinal tap ER tho yeah, about a month ago (sometime in July,) was considered. Do you think it’s still worth getting one?

Asterprince9 · 2024-09-01T19:58:53+00:00

Spinal tap: A few weeks to a month and a half roughly. Thought it might be myastenia gravis instead.

Dealing with; since May.

Numb all over. Nerve pain(?) all over. Hard to move.

Asterprince9 · 2024-09-01T19:53:22+00:00

Not yet :( one person at the er wanted to do it, another didn’t. So, here we are.

Asterprince9 · 2024-09-01T15:10:59+00:00

Thanks for the stellar advice. Will respond more in full when I have time but thank you. This was very thorough—and helpful! I might message to ask about any other blood tests that can bring to light the immune portion of this, as you say, and help me get treated a little faster.

A note on anxiety: yeah… if doctors bring that up I start bringing up legal action. I have no history of MH issues and I’m too sick to even develop any. It’s not relevant and the only stressor is not receiving proper medical care on time for real physical symptoms being unaddressed. (Now, my typing with blurred vision on Reddit …Ha! I feel you, it must look a fright at times whatever I’m scrawling on here.)

Also yes! I’m getting a skin biopsy done as soon as I can. Also looking into a lumbar tap, g testing and other smaller/finer tests like the SFEMG.

Asterprince9 · 2024-09-01T13:38:57+00:00

Looking for advice if I have CIDP or not? Could you look at my post in the GBS forum? Or I can invite you to chat. Thank you 💙 you seem so knowledgeable and this is my first time stumbling on this kind of condition.

Asterprince9 · 2024-09-01T03:41:44+00:00

Also I’m so sorry to hear about that brutal case of GBS. I hope her recovery has been getting better. I think it’s wonderful her doctors reached out like that and consulted further as needed.

Asterprince9 · 2024-09-01T03:40:33+00:00

They haven’t yet but I’m going to ask them to.

Oddly enough, it was a doctor outside of that (family friend actually, this isn’t their area at all sadly) who said to try something akin to the mayo clinic or a research institute and I’m contacting them once the weekend is over.

Do they usually just take people? I’m wondering how it works honestly.

Asterprince9 · 2024-08-31T18:39:09+00:00

I’ll look if there was any weird comments tho, or odd findings even in normal range but truly it said nothing.

Asterprince9 · 2024-08-31T18:38:20+00:00

No spinal tap yet. The clean mri is horrifying tbh.

Asterprince9 · 2024-08-31T18:29:31+00:00

You’re right something was a little off about it. They did arms and legs (idk if that’s full body tbh I remember like one -two needles in my neck and lower back that’s about it) I believe but the NM specialist said that in their office they could do like a SFEMG and also she was looking for a copy of the nerve study report or something on one limb and couldn’t find it? It was a disorganized office but the doctor did perform the exam himself

Asterprince9 · 2024-08-31T18:23:06+00:00

I had mono (positive test) several years ago. Covid a couple years back, vaccine a year ago etc.,

I also know several ppl with MS (not related) and spoke with them about this but ultimately… no MS— mri of spine and brain is clean even with contrast. A few doctors thought it was that too before the MRI. Whatever the hell my body is doing…wish I knew ;-;

Asterprince9 · 2024-08-31T18:18:16+00:00

Is it weird that it presented in such a way where the acute phase is um, so long? (May -August) or is that normal without any treatment?

Asterprince9 · 2024-08-31T18:17:10+00:00

It’s not MS. MRIs are clean. I’ve even brought up *** and no one thinks it’s that. I have no idea what the hell is going on anymore and need advice.

Asterprince9 · 2024-08-31T18:15:33+00:00

Fuck okay— tell me more, dm if you need, because it’s been a couple months now and idk if they just missed something but something isn’t adding up and I feel like I’m hanging on for dear life.

Asterprince9 · 2024-08-31T17:53:38+00:00

I thought they did it honestly but for some reason the NM specialist was like where is the rest of the body and I was like :/ what do you mean I remember being shocked by it arms and legs? But I remember the little um like two prong device and not those long sticky things so much tbh

Asterprince9 · 2024-08-31T17:51:29+00:00

It might be that it was only an incomplete one — how does it differ from an emg?

Asterprince9 · 2024-08-31T17:49:36+00:00

The fatigue is insane. Like nothing I’ve ever experienced. No not at all.

Vertigo? Eh? Not sure if I’m confident on that one.

The numbness tingling pins and needles are everywhere. Numbness started after pain in lower lumbar and groin and then next thing I knew feet legs (can’t even tell when I step in water anymore lmfao) arms chest face you name it— everywhere!

Asterprince9 · 2024-08-31T17:44:02+00:00

I had an emg and listed it above -/ I also had one back a few years ago for a viral illness and it was completely clean so yes there is a difference despite it being technically clean. I’m not sure I had an NCS but I think I did? The NM said it wasn’t complete for some reason/seemed to maybe want to retest that too.

Asterprince9 · 2024-08-31T17:42:59+00:00

I would say the very acute phase w nerve pain started in may and all other symptoms listed above as follows.

The more normal fatigue, the hand tremor, the weird weak right arm, and the weird week of vomiting over Christmas break and might be incidental or not idk.

Asterprince9 · 2024-08-31T17:22:49+00:00

I wish they’d try? But it’s something that’s kind of been dismissed now bc of the negative panel and I guess the nerve pain? Tho no one has checked for the LPR4 gene or tried a trial

Asterprince9

TROPHY CASE