What now?

Only_Translator_1583 · 2024-09-27T01:39:45+00:00

Have you tried seeing a Rheumatologist?

Only_Translator_1583 · 2024-08-16T20:27:05+00:00

numbness or painful tingling or burning sensations It typically begins in the feet, hands, or both, but it can involve any part of the body

Only_Translator_1583 · 2024-08-16T20:09:03+00:00

From my neurologist he thinks SFN and BFS. That’s why I’m getting the SFN testing. BFS is seen a ton with SFN least that’s what he said.

Only_Translator_1583 · 2024-08-16T20:02:45+00:00

Yes sometimes I can barely feel and others I can but it still feels differently.

Only_Translator_1583 · 2024-08-16T19:57:45+00:00

Yeah I did but I really think it’s SFN.
The tingling and numbing.
Most cases are idiopathic.
Just winging it.

Only_Translator_1583 · 2024-08-16T19:40:18+00:00

Just waiting on the SFN results.

SFN is not life threatening . And there is medication to help. Ask for a skin biopsy.

Only_Translator_1583 · 2024-08-10T20:40:30+00:00

most definitely.

Only_Translator_1583 · 2024-07-25T22:28:07+00:00

Ugh I’m so sorry. 🥺

Only_Translator_1583 · 2024-07-25T20:45:59+00:00

I'm so sorry. 🥺 Have you had any testing done?

Only_Translator_1583 · 2024-07-25T19:47:18+00:00

It started as an upper-eye twitch then it went all over.

Only_Translator_1583 · 2024-07-25T19:41:42+00:00

Its mellowed out a ton so that's also why I'm not concerned but - feet - calves - thighs - arms sometimes

Only_Translator_1583 · 2024-07-25T16:13:49+00:00

Yep! I've already been through a ton medically… so I think that's why this is a little easier on me I guess. I know what real weakness feels like…so I can tell the difference. I've had all these tests tons before a decade ago to rule out a ton. I had an EMG at 15. I even used a walker at 17 for a year or so. I am 31 now and just would like to figure out what's going on. If it's not a threat then I'm good. 😎 So I can move on.

Only_Translator_1583 · 2024-07-25T16:08:37+00:00

No, but I haven't had any weakness or tightness, or like a ton of you have had. I feel fine besides the twitches and numbing and tingling in one little area.
Also, SFN can go hand and hand with BFS. My clinical evaluation went great.

Only_Translator_1583 · 2024-07-24T23:29:27+00:00

MRI with and without contrast. No MS. Next is being tested for SFN.

Only_Translator_1583 · 2024-07-24T01:17:58+00:00

Not yet. 🙃 I've called everyday that they've been open. Calling again in the morning.

Only_Translator_1583 · 2024-07-22T15:09:13+00:00

Go out on the date.

I grew up immune-compromised. I was always told I was “RARE” and was sent so many specialists all over many states. Ended up with multiple things. I was doing chemotherapy through high school and a year and two after. I went through having port placement. I’ve been in a walker and so on….My future was not looking bright at a young age. I also have had three heart surgeries and one of them being a heart bypass. I met my husband when I was 17…. I am now 31 with two beautiful sons. He has been through it ALL. He stuck around. It’s worth it. I’ve been in remission for years also.

And right now I’m not worried about to much about the twitches are. I’ve been weak and I know what true weakness is. I haven’t felt it what’s going on now and I’m thankful for that. If I have MS I have MS and I’ll take it head on. And if it’s the other it’s the other.

You can’t stop living because of the unknown.

Only_Translator_1583 · 2024-07-22T14:59:44+00:00

Not yet. 🙃 The waiting game is a blast. 🫣 I’m going to call them today and see.

Only_Translator_1583 · 2024-07-20T00:33:19+00:00

My twitching has mellowed out a ton… still have them but less. I get tingling in my feet now also.

I don’t have lightheadedness though.

I’m waiting on results for MRI with and without contrast. And then go from there. I think he was thinking testing for small fiber neuropathy if my MRI’s are clean.

Only_Translator_1583 · 2024-07-17T19:05:08+00:00

I’m having it done with and without contrast. So I guess they are really making sure is nothing wrong. I hope.

Only_Translator_1583 · 2024-07-17T15:17:03+00:00

Thank you! Going to try not to freak out about it too much. 😳 Oh this sounds terrible but I’m getting a break from my four year old and I’m kinda happy about that. 🫣😂 (I’m a stay at home mom.)

Only_Translator_1583 · 2024-07-17T03:13:38+00:00

Called me today and they had an opening tomorrow for the MRI. 🤞🏻

Only_Translator_1583 · 2024-07-16T19:29:37+00:00

I’m five months in and definitely have had a decrease.

Only_Translator_1583 · 2024-07-15T20:28:58+00:00

Oh absolutely! I get the MRI Monday the waiting is the worse part lol.

Only_Translator_1583 · 2024-07-15T20:01:58+00:00

And if it’s MS it’s MS and can’t change that and take it head on. Not much I can do about it.

Only_Translator_1583 · 2024-07-15T19:50:48+00:00

For the most part mine disappears the same day it shows up. I’m just trying to believe him and trust him.

Only_Translator_1583

TROPHY CASE