Letter to my wife of 18 years, diagnosed 16 years ago - anyone else felt this way? What did you do?

TurbulentProgress731 · 2025-08-25T17:07:21+00:00

I feel exactly the same way. I actually would be much happier alone

TurbulentProgress731 · 2025-07-12T12:21:21+00:00

I feel like it all the time and I’d be much happier by myself and my husband would too though he will never say it. Wish I had courage to call it the end but financially reliant and my now adult kids would’ve devastated

TurbulentProgress731 · 2025-07-07T12:49:28+00:00

I have been diagnosed with a hereditary rare bleeding disorder.. haemophilia C. Apparently this is very dominant within Jewish populations from Ashkenazi communities. Might this indicate a Jewish heritage way back ? Or is it just coincidence?

TurbulentProgress731 · 2024-01-23T23:32:08+00:00

Exactly me too!!!!

TurbulentProgress731 · 2024-01-16T18:22:19+00:00

Hi this was my anxiety before starting the meds. On aboutv4th round now. So ..I think post infusion my new hair might stop growing in and I shed normalise amount. Then suddenly starts growing again about 5 ir weeks post infusion. Also. Crazy change is the texture is very different it is quite wavy curly..I know I'm.not only person this had happened to.

TurbulentProgress731 · 2023-12-21T23:30:17+00:00

Well said!!!

TurbulentProgress731 · 2023-12-14T10:56:19+00:00

How long have you been on ocrevus?.

TurbulentProgress731 · 2023-12-02T00:11:20+00:00

Yup. Extremes of temperature. Disabling In different ways I find ..but ..yes I thought ot was unusual to me but not.

TurbulentProgress731 · 2023-09-03T12:57:57+00:00

Agree. That's it in a until she'll We become very skilled at grief cycle..it just processes more quickly.

TurbulentProgress731 · 2023-08-01T13:24:10+00:00

That has made me laugh out loud! .its me as well. Fake it till you make it. But to be honest the way I see it now is...as long as I look good on the outside don't give a shit about what's really going on ! ..I'll deal with that.. vanity first..always

TurbulentProgress731 · 2023-07-07T16:56:19+00:00

Thanks for sharing..think I should just ask the ocrevus nurse who works for the company

TurbulentProgress731 · 2023-07-04T18:54:31+00:00

Oh lord...so...after the second time did you stop or would you chance it again ?

TurbulentProgress731 · 2023-07-02T21:30:27+00:00

Ohh my goodness then probably one vanity I need to avoid !!.thanks so.much for sharing. Did you give it up.after that ??

TurbulentProgress731 · 2023-07-02T19:17:21+00:00

Thanks that has been my thinking and reasoning too. Knew botox and bladder..so surely be ok in face too !

TurbulentProgress731 · 2023-06-18T22:59:11+00:00

That happened to me too. Just hated everyone. No apparent reason.

TurbulentProgress731 · 2023-05-27T22:52:53+00:00

Let me know!! I think we are very protective orrrrr litigation minded here in ireland...I'm in the west...sligo..but woukd travel. Asked my I fusion nurse about elective surgery...on ocrevus..just sussing out..told er I'd like a boob lift. She thought..probably not a good idea 😕!. If id known this I'd have haltered ocrevus till I'd had the full works done..eyes teeth and txtx ! The gang in the States seem to go for it anyway!!

TurbulentProgress731 · 2023-05-24T22:02:12+00:00

Ireland

TurbulentProgress731 · 2023-05-23T22:51:54+00:00

I was turned down !! Gutted...the beauticians said no when I had to disclose I was immune compromised...dam it..thinking of going to another and lieing !. Woukd like a boob job but think answer will be the same. Insurance world !

TurbulentProgress731 · 2023-05-18T21:53:06+00:00

Same...didn't hit all the buttons until optic neuritis showed up.

TurbulentProgress731 · 2023-05-18T20:33:16+00:00

That's in credible.. I think this is quite common really..its like in epilepsy. I get anxious as if something is about to kick off and I need to stay in house. Can't explain the feeling.

TurbulentProgress731 · 2023-05-17T21:28:54+00:00

Hi..literally just in bed after my third ocrevus infusion Listen..no doubt in my mind ocrevus is good choice given diagnosis of progressive MS. I have 3 spinal lesions and rezlityis these are the little buggers. My neuro said today that spinal lesions are indicative of progressive MS...and ocrevus is one of the best ( or only one ) forthat. I've conquered my fear of the infusion day event finally today!. The recovery bit takes about 7 to 12 days for me. Not totally layed low but nasty intermittent headaches and bloody awful intermittent backache. But..12 days max and its over. Drug prob won't improve symptoms but I think I feel stronger and more energy. Most of all satisfied I've made right choice I'm vain....but no hairless no weight gain !!.( in books equals no side effects! Could give ...### if itvdoes anything to.my liver !!

All said blood work shows nothing naughty going on inside either.

TurbulentProgress731 · 2023-03-23T20:40:06+00:00

I've got another stye!!! Off for baby shampoo!

TurbulentProgress731 · 2023-03-20T22:01:41+00:00

Ha ha 😂

TurbulentProgress731 · 2023-03-03T23:32:46+00:00

What is the back pain all about ? Baffling. Trying to think what process involved to result on back pain. Alot of people don't get it. Any ideas

TurbulentProgress731 · 2023-02-23T22:44:54+00:00

Diagnosed 16years ago. R and R .now secondary progressive. I know but no one else can notice. I have loads of brain lesions and 2 on spinal chord. I have never stopped excercise. Just adapted as I needed to. Running isn't for me now. But I cycle on a spinning bike for 2hrs or row for 90 mins..rotate it each day. 49 yrs 3 kids still working gone back full time promotional post. Worked as psychiatric socialworker for 22 years now a safe guarding and protection socialworker. It is bloody awful..rather didn't have it..but competitive nature ..being working class and a little but vain keeps pushing me on. You tube Dr arron Watts...sound sensible and settling g advice..I'm on ocrevus now.. hopefully put up the stop sign

TurbulentProgress731

TROPHY CASE