Scelerosing Mesenteritis and Walking sticks

[svfarmer]

hi folks it’s been a long while since I’ve last posted- I have been in and out of hospital 3 times in last 3 months with the most excruciating pain in my tummy , it’s taken a while but I have been told I have an extremely rare condition called sclerosing mesenteritis , there have been meetings about me and away forward to treating it, my appointment is in 3 weeks time , wondered if anyone on here has the same condition ? And also how was it treated ?

also very reluctantly I need to invest in a good walking stick as my knee is twice and size and also my thigh , I can barely bend it , has anyone got any suggestions please ?

it’s Miss Mira,s Birthday next week so will be posting a pic of her. Thanks everyone xxx

[hopegalore20]

Hi svfarmer, sorry to hear about health troubles that you are enduring. Hopefully, a good treatment plan can be created for you. I do not know anything about this condition. All going well, someone with experience can point you in the right direction.

[Tiggywoos]

might be worth posting this on the scleroderma forum angel . OldTed is fantastic with all things abdominal related . Sending you the biggest hug xxx 😘🤗

[svfarmer in reply to Tiggywoos]

Thanks Tiggy - I’m on it now xx

[CecilyParsley]

Cool crutches do sticks like mine. You can even have images of Bea and Mira put on them and they do fabulous colours. I truly hope things improve for you lovely once they have a treatment plan for you xxx

[svfarmer in reply to CecilyParsley]

Thanks Cecily - I will have a look xx

[MEGS53]

Hiya

I know nothing about the condition, but I’m sending lots of gentle hugs 🤗🤗🤗🤗🤗🤗🤗

[svfarmer in reply to MEGS53]

Thanks Meg - how are you doing? Xx

[MEGS53 in reply to svfarmer]

Hiya

I’m having some ‘unusual’ 🤨🤨🤨 and scary eye problems. ‘Unusual’ seems to be the norm for us, eh. I hope they get to the bottom of your unusual 😬😬😬 gut problem. It sounds awful, so please take care.

🤗🤗🤗🤗🤗🤗😘😘😘😘

[svfarmer in reply to MEGS53]

Oh no Meg , so sorry to hear that, sending lots of love 💗

[MEGS53 in reply to svfarmer]

Same back to you sweetie 💕💕💕💕

[SF1000]

I’m so sorry to hear of your condition- I hope they find a way forward.

My walking stick is from Neo-walk.com. I get many people stopping me in the street to ask where it’s from. That cheers me up!

Good luck x

[svfarmer in reply to SF1000]

Thankyou so much I will have a look now xxx

[Stills]

sorry to hear this but wish you better days. Classic Canes do very trendy walking sticks and canes but I’m not sure how suitable they are for all medical needs but worth a look. Take care x

Tried to add link but can’t sorry

[svfarmer in reply to Stills]

Thanks Stills, will have a look - how is life treating you ? Xx

[Stills in reply to svfarmer]

No cancer found despite looking down, up, in and through so far. I’m holding my own thanks for asking, Tske care

[Spotty-ewe]

I’m so sorry to hear of your suffering SV. It sounds like you’ve had a rotten time of it recently. But I’m glad they have at last managed to diagnose what the problem is. I use 2 walking poles when out walking as they keep me stable and don’t advertise the fact I have a problem (poor balance, arthritis and fatigue in my case). I hope you find something that suits you soon. Looking forward to seeing a picture of Mira again soon. Sending hugs to you and the girls. Xxxx

[nottypical]

The NHS will give you one, then you'll have an idea if you want something different

[svfarmer in reply to nottypical]

Ahh I see, many thanks x

[Tiggywoos]

hey lovely what a rare gorgeous being you are ! I’m not on face book but maybe you are or one of your sons . This might be worth a look

facebook.com/groups/impsm/?...

[svfarmer in reply to Tiggywoos]

Thanks Tiggy - big hugs to you xx

[svfarmer in reply to Tiggywoos]

I’ve just joined the Facebook group xx

[Turquoise-1]

Hi svfarmer

NHS Physio can provide you with an appropriate walking stick. GP or your Consultant can refer you to them.

It’s important to be assessed by a Physio to have a stick of the correct height. One type they provide has a shaped palm/hand rest. Their sticks are very robust & stable.

Whichever type you get, I recommend getting some wrist straps to attach to the stick, they make a huge difference if you need, (at times) to have both hands free. The wrist strap prevents the stick falling to the floor.

Can’t offer any help regarding SM, but having persistent, long-standing gut issues/pain myself, I do empathise.

My husband who has RA wears knee supports, his Consultant Rheumatologist approved the wearing of them. They’re neoprene, contain copper & have adjustable Velcro straps. (Wearing too tightly for lengthy periods isn’t recommended).

The make is Dr Arthritis, they’re machine washable (I loosely wrap them, fasten straps & put in a mesh wash bag). Hubby has Dr Arthritis wrist & ankle supports too, I bought them from Amazon.

All the best to you 🙂

[svfarmer in reply to Turquoise-1]

Thanks so much for your reply- it’s been most helpful and will look on Amazon now xx

[Poshcards]

For walking sticks visit your local mobility shop, they will advise on correct style height etc and they are very reasonable prices, I find Cool crutches are too expensive for me x

[svfarmer in reply to Poshcards]

Many thanks x

[StriatedCaracara]

Hi SV

I'm going to do a gut-related post. So many of us have gut issues and we don't know the cause. Maybe some of us relate to the list of symptoms stated even though we have never heard of the condition.

The rare disease website also calls the condition 'mesenteric panniculitis'

rarediseases.org/rare-disea...

Says mainstay of treatment is steroids.

This 2022 paper, just above the 'Conclusion', has something on other treatment options:

ncbi.nlm.nih.gov/pmc/articl...

Hope the treatment is good and you feel better soon.

It is good that they picked up on what was happening and seem to have a plan. They will hopefully monitor everything too now and help keep things in check.

I'm looking forward to the birthday photos.

Take care💐xx

[svfarmer in reply to StriatedCaracara]

Brilliant Thankyou will look at the link now - big hugs 🤗🤗

[Pumpkin2009]

I don't know anything about yur condition, but wish you the very best. So difficult dealing with so many things and so little answers.

Lots of healing and hopeful hugs.

[svfarmer in reply to Pumpkin2009]

Thanks Pumpkin and hugs back to you too 🤗🤗🤗💗