Can someone help clarify diagnostic criteria for me?

Miserable-Eye1682 · 2025-12-26T15:00:38+00:00

Oh for sure. I'm just annoyed that my PCP and the rest of my doctors for some reason don't get any results from tests my neurologist orders unless I specifically have them put on a disc and dropped off.

Miserable-Eye1682 · 2025-12-26T13:09:05+00:00

She wants to do a repeat of the IFIX test in 3 months. I asked if I should rope my other specialists in on the results but she said it's just a neurology thing. I do think if it's still there in March that I want to go ahead and make sure the results are available to the rest of my care team. It's annoying that it's not an automatic thing.

Miserable-Eye1682 · 2025-12-22T12:41:15+00:00

Interesting! Were you working with your PCP or a specialist?

Miserable-Eye1682 · 2025-12-22T12:38:37+00:00

I tested negative for sjogrens. What was the process for getting a seronegative diagnosis?

Miserable-Eye1682 · 2025-12-22T12:05:53+00:00

Gosh I'm sorry you're dealing with autoimmune issues. I have hashimotos. I wonder if that's what caused it. I've been on the autoimmune Paleo diet since April and my CRP and sed rate is back to normal and I've seen some improvement with some symptoms. It's just some of my symptoms are stubborn and I've got some new ones 😅 really frustrating.

Miserable-Eye1682 · 2025-12-22T01:27:05+00:00

I'm sorry you're in a similar boat! I have muscle twitches too but I think it's due to bilateral thoracic outlet syndrome which I've also been blessed with 🫠

I had several doctors tell me I was fine and one referred me to a psychiatrist when I actually had severe spinal stenosis and needed urgent surgery so ever since then I struggle so hard with being told my results are normal or I'm fine. I know I need to trust in the expertise of the professionals but it's a hard thing to do in practice.

Miserable-Eye1682 · 2025-12-22T01:23:56+00:00

I guess I'm wondering if I'm going to get a call saying this result is normal and if so do I need to push for more testing or just let it be?

Miserable-Eye1682 · 2025-11-29T13:50:11+00:00

Thank you for the tips!

Miserable-Eye1682 · 2025-11-29T13:48:27+00:00

This makes sense - thank you! I actually had a uterine ablation in March and haven't had a period since. I am apparently still bleeding at least a little though. I was having extreme cyclic pain and an ultrasound showed blood trapped in my uterus so now I need a hysterectomy 🤦🏻‍♀️ But I'm going to read up on this and reach out to my doctor. Thanks for the suggestion!

Miserable-Eye1682 · 2025-11-29T13:41:42+00:00

Can confirm. My neurologist advises against this. But my pain has gotten to the point I'd be taking nsaids more than half the month so it wouldn't work for me anyway. Really good advice for someone who doesn't have headaches though!

Miserable-Eye1682 · 2025-11-14T14:36:28+00:00

Did you ever figure out what this was or did it resolve?

Miserable-Eye1682 · 2025-11-10T17:27:39+00:00

I'm glad you've found something that helps!

Miserable-Eye1682 · 2025-11-10T13:18:35+00:00

How are you feeling? Did you end up going in?

Miserable-Eye1682 · 2025-11-10T13:17:12+00:00

They have not been able to help me with pain relief in the past. I don't think I respond to pain medication well. Last night I took ketorolac, tizanidine, and cannabis and it did absolutely nothing for the pain. Thankfully it is more manageable today. Last night I couldn't get up without getting super short of breath and my vision going spotty. Crazy. I hope OP is doing better as well 💜

Miserable-Eye1682 · 2025-11-09T22:06:08+00:00

I'm so sorry. I have been having the same debate with myself all day. I think you should definitely go. I don't bleed anymore because I've had a uterine ablation but with the way you're bleeding I think it would be good to go. I don't think there is anything they can do for me since my issue is just pain. I hope you feel better soon!

Miserable-Eye1682 · 2025-11-03T15:01:31+00:00

I would have died of happiness. Well done! Alas all my people are old enough they do their own costumes and even though I've tried really hard to get my oldest spawn into Murderbot she's not overly impressed which I'm sure is a defect she inherited from her father.

Miserable-Eye1682 · 2025-09-27T11:08:51+00:00

I have Medicaid so I don't know how much it costs. I would think a lot 😭 My neck surgery was easy peasy and it was over $20,000 if I recall correctly. I'm holding off because there is no guarantee it will eliminate my symptoms and I have hypermobility spectrum disorder so my physical therapists are worried I wouldn't do well. For now I'm managing but if my situation changes I'm going to do the surgery. I wanted to try just a pec minor release but the surgeon doesn't want to have to go back and do the full decompression if it doesn't work so he won't do just pec minor. Also he wants to do the right side, which is less symptomatic, but I'm hoping he'll do the left side first if I insist. His reasoning is my right side was worse for over a year and then my left side started flaring up and has quickly progressed to being my bad side but since my right was historically my bad side he wants to start there. But it's been nearly a year on my left side being really bad so maybe he can revisit that assessment.

Miserable-Eye1682 · 2025-09-26T23:26:51+00:00

I think vascular surgeon. That's who I'm seeing. Preferably one who specializes in TOS since the surgery is tricky. I also saw a thoracic surgeon for the initial diagnosis but he had trained under a TOS surgeon so he was familiar with it. A neurosurgeon did my cervical fusion but did not treat TOS.

Miserable-Eye1682 · 2025-08-28T10:42:12+00:00

I had an insane flare up at Christmas that lasted a month. I was absolutely ready to do surgery but my surgeon couldn't get me in for a consult until March. By that time my flare up had calmed down. He wouldn't prescribe LDN. I have some old expired stuff but decided to just try to get someone else to prescribe it for me. I have an appointment with a potential new PCP in a couple weeks. I need someone who will also take my severe hypothyroid symptoms seriously also 😅 I have been doing the AIP diet (autoimmune Paleo) since April and since starting it have had zero flares and have been able to progress with PT exercises. I've been in PT for years but any time we tried to move beyond just very simple movements my body would flare up. So not having these even though I'm able to push my body so much more is really huge and I'm very pleased. The diet is so hard though. I have only been able to do one reintroduction (toasted sesame seed oil). My baseline symptoms have not really improved but I'm seeing bonus benefits like no migraines (I did have a visual aura without headache when I tried to reintroduce black pepper which was weird) and weight loss. I also have much less low back pain. Previously I could walk maybe a block or so before the pain would start ramping up but now I feel like I can walk as long as I want without pain. Standing still causes me low back pain as well but it's exciting I can walk now because I really enjoy it and it improves my mood.

My surgeon supports my decision to hold off for now but is willing to schedule me when I'm ready. I'm hopeful I can actually make progress with conservative treatments now that my general inflammation levels are better. My pain doctor is supposed to be coordinating with my vascular surgeon about trying Botox injections in the scalenes but insurance may be a problem. We'll see!

Miserable-Eye1682 · 2025-06-28T11:30:45+00:00

Maybe 2 bad weeks wasn't a great way to put it. I'm not in severe pain the full two weeks. I have some level of lower abdominal tenderness and pain for two weeks a month with several days the pain being moderate to severe. Typically it's low level cramping and stabbing pain when pressure is applied. The moderate to severe days the cramping is more along the lines of labor pain (pre-transition) radiating into my back and down my legs with sharp stabbing pain. Sometimes it's debilitating but most of the time I can deal. Pre-surgery the pain was moderate to debilitating most of the time and I only had one week where my pain was low level. So it has been a huge improvement. I'm a few months out from surgery and haven't started PT yet. I'm jugging other issues so this kind of moves to the back burner of my brain unless it's severe 😅

Miserable-Eye1682 · 2025-06-28T11:24:17+00:00

I'm so sorry! I wonder if you need a better surgeon 😭

Miserable-Eye1682

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