Hello everyone. I’ve visited this site so many times and never commented or anything. But, today is a bad day. I’m feeling quite depressed.if you’ve got a cup of tea and want to read a story, read on…I have Crohns Disease and had surgery two years ago. I’m currently on Humira injections weekly to maintain remission. During my recovery, I was out one day and it literally felt like someone had poured hot water on my head. It was the weirdest sensation. It really did feel like hot water being poured on my head and down my spine. From then on I was achey, feeling disorientated ,couldn’t walk( at times it was a task just to put one foot in front of the other), my speech would be slurry then would go back to normal, clumsiness, sight problems (which cleared and given the all clear),twitchy muscles, blood pressure problems, palpitations…the list goes on. I found I could not return to work, which my doctor backed up, I was just so lousy. Then I’d have better days, then all of it would come back. To cut a long story short, my Neuro cannot give me a 100 percent MS diagnosis as I have symptoms that could be ‘something else not so nice’. LP came back with evidence of whatever it is, but not outstanding. My reflexes are ‘pathologically brisk’ ( most times my Neuro remembers to stand back a bit when testing the knee jerk lol). So, I believe I’m in what I’ve heard to be 'limbo land '. Today, I have been to see a spine specialist as they’re not sure if lesions are affecting that too…and he couldn’t give me a yes or no. To be quite honest I’m at the end of my tether. Ive had two years of appointments, waiting, tests …you know the drill. My situation at the moment? I’m mostly housebound, my husband works away midweek and he takes me out at weekends as I’m just not able to be out alone ( to think, walk, maintain awareness and not zone out or support when I walk) so I stay at home. I’ve no friends as the ones I had were work colleagues (and a lot younger, I’m 40), so I don’t have a massive support network. Don’t get me wrong, mu husband is great and does what he can, but I don’t want to moan at him, and it’s also that it’s hard to understand if you’re not going through it. If there’s anyone out there who is in a similar situation, or can relate, I would be grateful to hear from you xxx
Hi Beverley from another limbo lander,
Completly understand your frustration and fear. I doubt that there is anything i can say that will be of any help, it’s the not knowing that is worse than the thought of the dx itself in my opinion.
What is going to happen next, is your neuro seeing you again, any further tests planned?
One thing that I am starting to piece together recently is that quite a few people suffering “MS” type symptom have had previous surgery. I my self had 2 spinal surgeries plus 2 procedures where the nerve endings in my spine were injecected into directly. But I see people have had varying surgeries not just spinal so I can’t help wondering if there is connection between surgery and delemylating illness.
Like yours my hubby is as supportive as he can be but i never tell him exactly how i;m feeling anymore as i’m sure he can’t really understand.
This forum is a great place for support and advice, sharing experiences with others in the same situation really does help.
Really hope you find some answers soon.
Bunnyxxx
Hello! I’m still getting to grips with this site, Thankyou for your reply. It’s great to be here with so many people in the same boat. I’m just waiting for another MRI at the moment, my next Neuro appointment is November lol. Xx
Your cooking on gas now Beverley…my work is done lol
Ha ha, you’re a star xx