Inconvenient Annoyances

A lot of the more powerful meds (anti tnf biologics) can cause or worsen MS. If he hasn't got MS then that's probably their first port of call. Active AS is incredibly painful really debilitating and, coupled with IBD makes for a nasty combination.

The biologics really worked for me with AS. I haven't had so much luck with UC so far but it's early days for Humira. I was on Simponi for years but actually developed UC on it. I used to get regular bouts of UV too and was frequently at the eye clinic. Luckily, biologics put a stop to UV too.

People get v scared of biologics unnecessarily. They're amazing drugs and very powerful. We're very privileged in being able to have them in the UK under the NHS as they cost thousands per injection. There is a small personal cost in that you catch every disease known to man. This is why i am not a fan of kids and avoid them at all costs!

My next step with UC is Remicade infusions if Humira fails. After that it's surgery time for colon removal. At least I have that option with UC. I genuinely feel for the Crohnies. Have a look at the Crohns and Colitis UK Facebook forum. Amongst the occasional bickering and toilet bowl photos, it can be quite useful. Best of luck.



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Hopefully with the "legalisation" of medical cannabis there will be some trials for crohns and UC here. I have friends who have had a lot of luck with remicade + cannabis in Canada for the UC & spinal degeneration combo. There's also some dietary interventions that are starting to get support from clinical studies, like the wahls protocol for MS and the SCD/GAPS diets for inflammatory bowel issues.


Lyonaria, try to be patient and not jump to worst case scenarios while going through the tests. A lot of things can look like MS, you need all the tests to get to the bottom of it accurately. And there is lots of support and treatment options if it is. *hugs* I recommend joining some support groups for spouses of folks with chronic illness, I know there are some for EDS spouses and I've debated asking my husband to consider joining. Being the support can be challenging and you need your own people who get it to lean on in challenging times! (of course we are all here too )

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I've had some success with low fibre diets working with my dietician. Hoping Humira works for me to get me off Prednisolone as I have horrible moonface and various other long term roid use issues.

If anybody needs any help with such diseases then feel free to chat to me. I've dealt with them for a lot of years and I've been at the very worst end of the spectrum with most of them too.

Best of luck to all out there suffering.

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Rick, I hope you're feeling better now, and hopefully making progress getting everything sorted.

Lyonaria, hang in there!  If it is MS, you'll cross that bridge when you get to it.  It might not be.  Take it one step/day at a time - January isn't far away at all now, and hopefully, it will be less overwhelming once you've gotten a chance to speak to a neurologist. 

Many hugs to both of you; not what anyone wants to go through during the Christmas season. 

Rick, I hope you're feeling better now, and hopefully making progress getting everything sorted.

Lyonaria, hang in there!  If it is MS, you'll cross that bridge when you get to it.  It might not be.  Take it one step/day at a time - January isn't far away at all now, and hopefully, it will be less overwhelming once you've gotten a chance to speak to a neurologist. 

Many hugs to both of you; not what anyone wants to go through during the Christmas season. 

Thanks. It's just been a rough 2 months. Hubby's having a Crohn's flare up and some other weird symptoms. I can't remember what they're called, but basically fat cells that go nuclear and create lumps that are painful and look like bruises. His shoulder is freaking out, one of his toes is getting arthritis...

He's having issues with the ankle he broke in 2017, it's being weird, red, swollen and the skin is peeling.

And he's tired all the time.

It's hard. I did not agree to be the only one doing cleaning, grocery shopping and taking care of the dogs. And working 40 hours a week.


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I've had some success with low fibre diets working with my dietician. Hoping Humira works for me to get me off Prednisolone as I have horrible moonface and various other long term roid use issues.

If anybody needs any help with such diseases then feel free to chat to me. I've dealt with them for a lot of years and I've been at the very worst end of the spectrum with most of them too.

Best of luck to all out there suffering.

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Hubby's been dealing with his Crohn's for years, but the ankyolising spondialitis is new this year and nothing can be done with it until the neurology stuff is done. His rheumatologist had him do new MRIs this year and they're the one who said there is a possibility of MS and that nothing can be done until they know where it's at. He's having a rough time health-wise and I'm having a rough time mental health wise. 😶

Big hugs lyonaria.  Hopefully January flies to appointment time for your hubby and you can then figure out the lay of the land. 

Hubby's been dealing with his Crohn's for years, but the ankyolising spondialitis is new this year and nothing can be done with it until the neurology stuff is done. His rheumatologist had him do new MRIs this year and they're the one who said there is a possibility of MS and that nothing can be done until they know where it's at. He's having a rough time health-wise and I'm having a rough time mental health wise.

I got lucky with AS and have been in continuous remission since 2014. Biologics worked really well for me with it. I hope that the MS thing is ruled out quickly and he can get the meds he needs.

My UC is now the bane of my life. IBD nurse keeps mentioning the surgery swear word.

I get the tiredness thing. Honestly, it's one of the worst things about this disease; the feeling of constantly being ill. It's not helped with AS by being kept up at night in pain. I remember having to have weekly joint draining appointments, not being able to drive or get myself dressed. It really sucks but there's hope with the meds trust me.

I know you didnt sign up for this and nor did my wife (I was healthy when we met and got married). Once you get the AS under control, stuff will improve. All the best

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Hubby's been dealing with his Crohn's for years, but the ankyolising spondialitis is new this year and nothing can be done with it until the neurology stuff is done. His rheumatologist had him do new MRIs this year and they're the one who said there is a possibility of MS and that nothing can be done until they know where it's at. He's having a rough time health-wise and I'm having a rough time mental health wise. 😶

[[hugs]] For better or for worse - it's always harder when it's "for worse" than anyone imagines at the start of things. And unless someone's gone through it, they can't really know what it's like.  I wish there was something I could say to ease your burden, but I cannot think of a single thing, other than "it's not certain yet." Please don't start thinking the worst, as that will just do you more damage.

I really think that you need to find some support for your mental health. If you have a minister or a relative, or a good friend who is close to you that you can call on when you just need to talk, I think it would do you a world of good to lean on them. Everyone needs a shoulder to lean on, sometime - especially if the shoulder is not directly involved in the situation. A cup of coffee and a listening ear can do a world of good. Please do find someone to talk to about what you are having to confront. Your spouse is probably terrified as well, and there are going to be things you are not going to want to discuss with him, but that you'll need to talk over with someone just to get them out.

Best of luck. If you're ever in Glasgow Lyonaria and want a cup of coffee, give a holler.  I make a fairly decent cup of joe.

(Same goes for you, Rick.)

It's hard. I did not agree to be the only one doing cleaning, grocery shopping and taking care of the dogs. And working 40 hours a week.

I really feel for you. It's no picnic when your life  suddenly veers off course. My husband wasn't disabled when I met him but now he is and I have to do everything for both of us, right down to two sets of tax returns! 

 What keeps me going is the fact that I know how grateful he is for everything I do for him. He voices his appreciation often and even more so on days when he senses that I'm struggling.
Does your husband acknowledge all that you're doing? It's really important that you don't feel that you're being taken for granted.

, right down to two sets of tax returns! 

True love right there! I don’t think that bit is in the vows. 

DOCTORS!! I had another appointment today with several excellent and HUMAN doctors. The jerk that did the ultrasound on my eye......I think he had already made up his mind that my eye was not fixable, and got the distinct impression that he didn’t care if he hurt me. Massive blood vessel ruptures on my eye.....and he was as cold as ice about it.


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DOCTORS!! I had another appointment today with several excellent and HUMAN doctors. The jerk that did the ultrasound on my eye......I think he had already made up his mind that my eye was not fixable, and got the distinct impression that he didn’t care if he hurt me. Massive blood vessel ruptures on my eye.....and he was as cold as ice about it.


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Sorted now then? Hoping for the best!

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DOCTORS!! I had another appointment today with several excellent and HUMAN doctors. The jerk that did the ultrasound on my eye......I think he had already made up his mind that my eye was not fixable, and got the distinct impression that he didn’t care if he hurt me. Massive blood vessel ruptures on my eye.....and he was as cold as ice about it.


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What a jerk. I am so sorry, Rick.

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On the bright side, looking forward to the pirate patches! Although...... I wonder about a remote red LED. That might be very entertaining!


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On the bright side, looking forward to the pirate patches! Although...... I wonder about a remote red LED. That might be very entertaining!


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I have a friend who makes custom bionic gear with LEDs. I'm sure it could be sorted

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