Where to start… I just lost my previous post but it was threatening to be an epic, so it’s probably just as well I make a clean start. I feel that I’ve had a real run around getting here and tere’s definitely something therapeutic about writing this down. I’m definitely not on top form today so apologies if I do ramble a bit. I’ve been off steroids for 2 days and hurt all over (is that even normal?) so have stayed in my PJs today.
I’m 42 and self-employed (financial services) and until very recently, I also taught pole fitness classes part-time. I’d have probably said I was in tip-top shape 18 months ago (I used to be a couch potato and as a kid, I was sickly with weekly migraines), so things have been difficult gettung my head round.
I initially went to my GP early last year, as I thought I might have coeliac disease, my Mum has it and I’d started home-baking. I had started losing weight and had a pretty upset tummy a lot of the time so this made sense but I don’t think I have coeliac disease. Eventually (insert nightmare with Codeine!) I got to see a gastroenterologist and I started taking Loperamide regularly. I went back to the doctor late last year as things seemed to be getting worse again and I’d lost more weight. I’d also been having a few random problems walking so she ordered extra blood tests and gave me Mebeverine (nightmare part 2), after bloods came back normal, I was eventually referred back to the hospital. The consultant agreed to a colonoscopy after insisting it was just IBS, he wasn’t interested in the walking trouble at all…
December was difficult, I had a really bad day early in where I failed an exam and then fell over in town whilst doing Christmas shopping (thank God for the internet!), obviously I was keen to work out what was going on, so went to see an Osteopath - I am so thankful to her as whilst she wasn’t able to totally fix things, she was a good listener and after a few checks, insisted on writing to my GP - not sure where I’d be now if not for that letter!
part two - hubby just came in from mowing the lawn but didn’t want to lose another post!
So, I had a colonoscopy that showed I had ulcers and inflammation of the terminal ileum and the doctor that did the procedure wrote down that I had Crohns. When I saw the consultant again, he was adamant that it wasn’t crohns as my blood tests are too good and wouldn’t refer me to a nutritionalist on that basis either. I was pretty angry as I’m clearly under-weight now and I was petite anyway. He did however, agree to send me me for an MRI of the small intestine - wow, what a surprise that that earned me a referral to Urology, I hope I don’t sound too bitter but I have tests lined up now but it would seem that this is something I might have been born with sigh
Needless to say, I was referred to the Spinal unit and then for a full spinal MRI, things went quiet for a bit. Eventually my GP told me that I was being referred to Neurology. I saw the consultant last week and he explained why he felt it was MS. He gave me 5 days of steroids which I finished on Sunday. I feel horrible today as my whole body feels bruised. I guess they keep working for a few days afterwards but if anyone can shed light on that then I’d appreciate your comments
So, things have started to fall into place a little now, I now know why the optician sent me to an opthamologist last year! If it hadn’t been for my lovely osteo then I don’t know where I’d be, the walking has gone right downhill so I gave up teaching my classes about 2 months ago and for about a month before, I’d had to instruct the warm-up whilst doing squats as I just couldn’t do the aerobic steps myself!
The Neuro consultant is sending his report to my gastro consultant, I’m guessing that I don’t have crohns but it would appear that my bloods have all been skewed since the start.
Anyway, I’m gonna stop waffling now. I will be booked in for a head MRI and I guess I’ll know more after that. Optimistic that the steroids might help me gain a little weight and that I will dance again soon
Hi its good to hear that things are starting to get sorted for you, can be a long process and sounds like you have had every test going! Steroids can send you on a bit of a high and then bring you crashing back down again, they stay in your system for a while and can take a week or two to take full effect. I’ve only had them once and they turned me into a crazy person (road rage!) Hope the MRI goes ok for you and that you get back on that pole soon! Good luck Laura x
Hello and welcome MS won’t cause ulcers and gastro inflammation, but it can definitely cause IBS and reactions to meds can add the rest (been there, done that!) so I’m guessing it’s that or it’s MS + a separate gastro condition or it’s something else entirely. One thing is for sure, it’s something! And that means that your GP and other doctors have some hard questions to answer Steroids can cause all sorts of nasty side effects, but they’re usually fairly short-lived so hopefully you’ll start to feel better soon. I’m not sure that they’ll have you pole dancing at the same level again, but you never know Karen x
Thanks Laura and Karen, I really apreciate your comments x
I know the difficulties with control probably probably do come down to the MS but the ulcers… it’s really annoying that the consultant just dismisses it. I guess he might need to review things.
Still feeling delicate today so off work again but fully intend to get back tomorrow. It just so happens that me and my husband have been asked to do something by the client that’s ‘time-critical’ and I don’t want nearly two years of hard work to go down the pan, not to mention we need the money! It’s the first time I ever really felt vulnerable being self-employed. Even when I do have a contract that I hate, my reputation has been good so I still pick and choose what work I do. Feeling the pressure now as I really need my exams done and dusted.
As for pole, I’m picking one up from the gym tomorrow night, so hope I’ll feel up to having a little try at the weekend. At my age I was never that dynamic but as a teacher, I’m a stickler for control so I really hope my core strength might make up for what I lose in grace and pretty/clean footwork
I thought I should update this as my 2nd neuro appointment was just over a month ago now but I was pretty upset and started using the primary progressive section as I figured that was the only way I might het my head around it!
So on my birthday (yes, only I could end up having two hospital appointments on my birthday!) I got the news that I “most likely” have PPMS. The only thing the steroids really helped with was my tummy and I’ve managed to gain a little weight. The gastroenterologist didn’t rule out crohns either, so it was a pretty bad day all in. I didn’t want to go out so we spent the evening curled up on the sofa with a KFC and a bottle of champagne, perfect
I find it ironic, that I now won’t leave the house without a walking stick but I can hold my pole and deadlift into an invert. I desperately don’t want to lose that strength! But there’s now a pole in my dining rooom that I’ve only spent about an hour on since diagnosis, it’s disheartening when I walk so badly and the vertigo or whatever it is makes spins difficult too.
Anyway, I’ve not given in just yet - I started my LDN initiation prescription last night and if that goes well then maybe my legs will be a bit more under control again and it’s supposed to benefit Crohns, so I’m hopeful it will have at least some benefits for me I think I need to gain about another half a stone to put me back to pre-sick weight. It was scarily low early this year so I’m happy that that’s behind me too.
My family and friends have been amazing, I think truth be known my emotions are so up and down that I don’t quite think I’ve reached a sort of pivot point just yet but I think I’ll get there.
I’ll see if I can find a piccie to add - I used to teach twice a week so it’s been tough giving that up.
MS won’t cause ulcers and gastro inflammation, but it can definitely cause IBS and reactions to meds can add the rest (been there, done that!) so I’m guessing it’s that or it’s MS + a separate gastro condition or it’s something else entirely. One thing is for sure, it’s something! And that means that your GP and other doctors have some hard questions to answer 
Steroids can cause all sorts of nasty side effects, but they’re usually fairly short-lived so hopefully you’ll start to feel better soon. I’m not sure that they’ll have you pole dancing at the same level again, but you never know