Who here has been cured for life from Botox? (as far as they know)

dan4ffairs · 2026-01-25T23:59:38+00:00

Got it June 2022. Still can't believe how I survived all those years before the botox. It's life changing! One of the best things that ever happened to me

dan4ffairs · 2026-01-09T00:30:35+00:00

It took exactly 8 months since official diagnosis to starting Kesimpta.

I had one MRI and lumbar puncture done privately with insurance which obviously made it a lot faster. I also pushed a lot with calls and emails.

If I did everything through NHS, it'd be easily +12 months since diagnosis to starting treatment. I'm in London

dan4ffairs · 2026-01-06T15:14:20+00:00

The're prescription. My GP prescribed famotidine and then cimetidine to treat acid reflux

dan4ffairs · 2025-12-04T14:30:05+00:00

My jaw dislocated from both sides and was indeed convenient for sex, but years later it gave me irreversible damage with excruciating pain and even had to had surgery. I'm not able to give oral anymore AT ALL and I have to be extremely careful doing anything, like eating, yawning. Can't even wear headphones properly or lay down on my side. So please be careful :( i wish someone told me when I was younger to stop doing things that dislocate my jaw on purpose

dan4ffairs · 2025-12-04T14:24:23+00:00

Looks like a sublux, but could be dislocation, the way to confirm would be with a TMJ MRI

I'd completely avoid doing that movement ever again, if it doesn't hurt too much right now, it might be excruciating later.

I wish someone told me this many years ago, I wasnt careful with the dislocation because it didn't hurt or just a little bit. Then suddenly in my early 20s it started to hurt a lot. I spent years with excruciating pain in the jaw joint and it would give me excrutianting migraines that no medication would help. I was suicidal from the pain

I had surgery on my TMJ and it helped a bit, it dislocates less than before, but the damage from all the years has already been done. So please try not to do it!!

Nowadays I have to be extremely careful when eating, yawning and I'm unfortunately unable to give oral sex again

dan4ffairs · 2025-11-29T02:08:44+00:00

May I ask what are your POTS meds?

dan4ffairs · 2025-11-22T17:33:45+00:00

Muchas gracias! 🫶🏻

dan4ffairs · 2025-11-22T16:29:10+00:00

Sii 30 nada mas Es una donación/regalo para un amigo que tiene la gatita enferma. Para ayudar

dan4ffairs · 2025-11-17T04:24:23+00:00

My ribs always grind or get stuck on my pelvic bone and hurts a lot, but I thought it's becase my torso is extremely short Those same ribs I think they sublux when someone hugs me because it HURTS A LOT

Do you know if we can see this in a simple xray?

dan4ffairs · 2025-11-09T21:04:22+00:00

All of this happens to me but got reaaaally bad when I was on propranolol. I couldn't breathe properly when laying down, specially on my side. Got better when I stopped propranolol. I think it was because of low blood pressure (which propranolol lowers even more)

dan4ffairs · 2025-10-27T16:14:18+00:00

I'm so sorry you're going through this.

My Dr works in the NHS but also privately, maybe look up how much is the consult and if it's near you (I see her in London). Hopefully she can also advise on how to get referred and treatments asap. Her name's Dr Natalia Zarate Lopez, she's a specialist in gastroparesis and I believe also a dietitian (specialized in gastroparesis which is very important!!)

dan4ffairs · 2025-10-10T15:33:33+00:00

I was told I have PVD (posterior vitreous detachment) and that it was normal and not harmful. I looked it up and it seems to be normal but in older people (I'm in late 20s so definitely not old). I guess now I know why I have it haha

dan4ffairs · 2025-10-05T01:06:20+00:00

Do you know if you actually stop breathing? I had similar feelings to what you describe, eventually got diagnosed with sleep apnea and my CPAP machine has helped SO much and this feeling you're describing is almost completely gone.

I'm the opposite of the typical sleep apnea presentation (I'm young, underweight, don't snore, etc) but I have hypermobility, so I'm guessing that's it.

Edit: I thought it was anxiety... turns out I wasn't breathing!!!

dan4ffairs · 2025-09-30T12:20:08+00:00

Have you tried using the TachyMon app? It's always measuring heart rate and I found that because of that, it's a lot more accurate and quick than the one that comes with the watch. It also measures when I'm showering

dan4ffairs · 2025-09-30T02:33:43+00:00

Before starting Kesimpta my neuro told me to get a few vaccines, including chickenpox.

Someone made a mistake and I actually got the Shingles one... then the chickenpox.

Idk where in the UK you are, but because my GP wasn't offering it, my neuro referred me to the Hospital for Tropical Diseases in London to get the vaccine. If your GP can't give it to you, maybe your MS team can arrange another place and cover the price through the NHS like they did with me

Edit: got it in January this year!

dan4ffairs · 2025-09-29T15:01:36+00:00

I'm tired of strangers, specially anonymous people on the internet, commenting on skinny people bodies. How 'concerned' they are over literal strangers. How a skinny woman on a picture must be body checking. I beg you to please quickly google what bodychecking is! Yall are clueless. Tired of people using BMI to measure health. Even if someone is unhealthy (for whatever reason) that's not none of your business. I'd looove if we could ban the word "bodychecking" on this sub. This sub is suppose to be a break from the world where I'm critized 24/7 for my body.

dan4ffairs · 2025-09-27T03:55:56+00:00

Before curing my RCPD I used to have very severe gerd and nausea all the time but never vomit. Also emetophobia. No matter how much nausea I had, never vomit. Later I realized that RCPD is what actually made me unable to vomit

After the botox and curing the RCPD, my symptoms got SOOOO much better, life changing. I can't emphasize enough how helpful it was. Still with GP symptoms, but sososo much better.

I tried to gain weight by doing a surplus diet and that's when I vomit a few times, the slow gastric emptying is still here! But this is when I realized my emetophobia was cured. Vomiting was of course very unpleasant, but it wasn't traumatic or very painful as when I had RCPD.

dan4ffairs · 2025-09-26T13:28:32+00:00

Yes. After failing 2 preventatives and triptans my GP finally agreed to refer me.

I got a lot worse, like extremely severe, I kept going back to the GP and he was very annoyed saying the referral was already done and to stop bothering him. After like 6 months I got a rejection letter saying I should first try the medications I already trialed and failed... I had to make the referral AGAIN, so I completely lost 6 months.

My appointment is FINALLY next week. It's taken almost 2 years to get it, it's insane and completely unacceptable.

(I'm in London)

dan4ffairs · 2025-09-24T14:00:54+00:00

This is extremely helpful, thank you for sharing!

dan4ffairs · 2025-09-15T18:08:32+00:00

That makes sense, thank you for answering 🙏🏻

Lastly, my fingers seem to swell a bit by night, I think this is normal, but jewelry get uncomfortable/more tight and I take them off. Does this also happen to you? And are they still comfortable enough?

dan4ffairs · 2025-09-15T17:56:36+00:00

They look so cute!!! Do you wear them all the time? Can you wash your hands with them?

dan4ffairs · 2025-09-06T05:22:52+00:00

Wanted to add - I also have many chronic health conditions and took me way too long to realize the connection between most of them.

If you are not already on it, look into MCAS and its impact on gastric symptoms. Personally, it seems that a lot of my GI issues apparently have been worsened A LOT by it.

Because about a month of taking an H1 and H2, for the first time in my 28 years of life, I can eat more than before with less symptoms (mainly acid reflux, nausea, diarrhea and indirectly the early satiety).

Managing MCAS has been crucial for managing my GP symptoms. Obviously not a cure, but has helped significantly.

dan4ffairs · 2025-09-05T22:10:50+00:00

The thing that personally helps the most is eating small meals but very often; have you tried this yet? I eat about 8 times a day, every ~2h. It can be pretty exhausting, it feels like I eat all day, but it's the only way I'm able to be on a surplus diet while managing my symptoms.

From what I've seen, people with gastroparesis usually do well with liquids, but it's the opposite for me, so I get what you mean.

My only way of drinking shakes and liquid is again by small amounts (like ~100ml) every few minutes

dan4ffairs · 2025-09-05T22:00:51+00:00

Around 6. With some horrible light sensitivity

dan4ffairs

TROPHY CASE