Back in limbo land ? : /
Righto, a weird one this. You know about me and how over the last 2 or more years I've had MS symptoms. I had MRI, this showed lesions. Well, last month I had another MRI. I'm told by my doctor, 'I'm sorry, it's MS' ? Well....this is where it starts getting weird.
I had an appointment with my Crohn's disease specialist. Me and my husband told him that I wanted to come off Humira ( my Crohns treatment) as I'd been on it for 6 years and as my Crohns was fine, why not? He looked at my new MRI results. He said ' it's not MS' !!!! After bursting into tears, I asked how is that and he said, the lesions have not changed since the last MRI. The LP showed no signs, and the eye test and flashy light thing all showed negative,; this is the first time we have been told these results, some of them were done 2 years ago !
so, after the most relief I think I've EVER felt in my life, we chatted about the possibility that the Humira may have caused the lesions in my brain and the Neuro symptoms. I mean, every symptom is classic of MS ( probably why they told me I had it). So ! The upshot of it is, I am now off my injections to see if it is the injections causing it. I've been told that I should see an improvement within the month if it's the Humira. Meanwhile, I'm going to be going through the worst withdrawal until it gets out of my system. I've got 2 months without the treatment, if my condition improves...there's our answer. If not, by that time I will be seeing my Neuro. Now it's just time to wait and see.
when I last saw my Neuro, he said ' if it's not MS, it's one of 2 other things that aren't so nice'. Well, I'm hoping that that isn't the case now after the new MRI. As for my doctor who told me I have MS....he got that one wrong!
I hope this essay(lol) gives hope to others. They got it so wrong with me, despite them telling me that I have MS. Of course, I'm being objective at the same time until I hear it from my Neuro's mouth, I'm not daft. But, I do have the glimpse of hope that I've not had before.
i will keep you all updated as I hear any news, but I'm keeping my fingers crossed :)
i hope you are all alright
xxxx
I had an appointment with my Crohn's disease specialist. Me and my husband told him that I wanted to come off Humira ( my Crohns treatment) as I'd been on it for 6 years and as my Crohns was fine, why not? He looked at my new MRI results. He said ' it's not MS' !!!! After bursting into tears, I asked how is that and he said, the lesions have not changed since the last MRI. The LP showed no signs, and the eye test and flashy light thing all showed negative,; this is the first time we have been told these results, some of them were done 2 years ago !
so, after the most relief I think I've EVER felt in my life, we chatted about the possibility that the Humira may have caused the lesions in my brain and the Neuro symptoms. I mean, every symptom is classic of MS ( probably why they told me I had it). So ! The upshot of it is, I am now off my injections to see if it is the injections causing it. I've been told that I should see an improvement within the month if it's the Humira. Meanwhile, I'm going to be going through the worst withdrawal until it gets out of my system. I've got 2 months without the treatment, if my condition improves...there's our answer. If not, by that time I will be seeing my Neuro. Now it's just time to wait and see.
when I last saw my Neuro, he said ' if it's not MS, it's one of 2 other things that aren't so nice'. Well, I'm hoping that that isn't the case now after the new MRI. As for my doctor who told me I have MS....he got that one wrong!
I hope this essay(lol) gives hope to others. They got it so wrong with me, despite them telling me that I have MS. Of course, I'm being objective at the same time until I hear it from my Neuro's mouth, I'm not daft. But, I do have the glimpse of hope that I've not had before.
i will keep you all updated as I hear any news, but I'm keeping my fingers crossed :)
i hope you are all alright
xxxx
Hope your future news is a good, I'll keep my figers crossed too!
Rosina x
I hope that your lesions will go away when you are off the treatment. Your first neuro probably didnt realise that your treatment can cause lesions and MS symptoms.
I hope all goes well
Moyna xx
I hope that what I have been through is remembered for people in the future so they don't have to go through this. This is all presuming that the Humira has caused this in the first place.xx
All the best and keep us posted. xx
I notice you say you've been on Humira for six years. As the consultant been monitoring you over the last six years, while you've been taking the drug, given that he will be aware that demyelination can be caused by this drug. Were you made aware of the side efects before agreeing to take it?
Noreen xx
the Neuro researched the drug and didn't say much at all. He saw my condition and results of reflexes are odd so pressed on testing. So all in all I'm just waiting to see if I improve after I've come off the drug and got over the withdrawal. I've got a backup treatment of steroids in the cupboard if the Crohns flares when I come off it and there's a new drug out if I need it. When I was recommended the Humira I had to sign a form but I cannot remember how nasty they said the side effects were, the state I was in I would have tried anything :s
the MRI (according to the doc) said no presence of demyelination , just lesions from what he could see. He did say he was no expert on brain things but it was brilliant news nonetheless . Xxx
i hope you are all alright and coping with the warm spell we are having, though as I'm looking out the window it looks like rain...plants won't need watering ;)
thanks again
xxxxxx