Back in limbo land ? : /

New diagnosis and before diagnosis
1

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 :slight_smile:

i hope you are all alright

xxxx

2

OMG Beverly! That’s certainly given you something to think about, hasn’t it? You must have been stunned.

Hope your future news is a good, I’ll keep my figers crossed too!

Rosina x

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The key thing here is the negative lumbar puncture. I just cant see how someone could be diagnosed with MS with a negative one. A negative LP shows that the immune system is active in the CSF and it shouldnt be. I have read that some neuros (including mine) will not diagnose with a negative one. Even on the Barts MS Blog the prof says that MS with an negative LP is not true MS (if at all) .I was told MS by one neuro and then another says by lesion is due the radiation therapy I had for lymphoma.

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

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Hi Beverly, hope it’s gonna be alright and withdrawal won’t be too bad! I’m stunned. But not the first time i read about a potential misdiagnosis - there are lots of stories where neuros said MS which later turned out to be neurosarcoidosis or they switched dx back and forth…

All the best and keep us posted. xx

5

Hello Beverley

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

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Thanks Rosina :slight_smile: yeah, it was extremely weird, I didn’t know how to feel to be quite honest. It’s a mixture so ‘woohoo!’ and ‘duh?’. I still can’t believe it, but not long to go till i see my Neuro ( in November) Hopefully by then he will have an idea of what is going on. Xx thanks for your reply xx

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Thanks Moyna. That’s how it’s weird as all my symptoms are classic MS, and he kept doing more and more tests. This is the news I got from my Crohns specialist, not the Neuro…typical! It’s been a crappy 2 year ride. The other problem is that as Humira is relatively new, they don’t yet fully understand it’s side effects. Biological treatments aren’t fully understood, but the problem I had before I went on the treatment is that the Crohns was so bad, it was that or lose the bowel : s

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

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Thanks Xenomorph. I can’t believe it. It’s cruel really as the process you go through to accept the MS, and all that goes with it, to then be told they’ve changed their minds :confused: Anyway, I’m going to get through this next 2 months, the withdrawal isn’t great but if I improve after it then it will be obvious it’s that causing it. Thanks for the reply xx

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Thanks Blossom. The doc who put me on it sees me every 3 months. They were aware of how I was feeling and never once said it was Humira. I had every test on my Crohns and they were happy that the treatment was doing its job and not interested. I then started having heart symptoms, checked and fine so that was that. Stay on the drug and be grateful. They recently brought it regular blood tests to monitor liver function etc. my levels of inflammation are always up a bit so they always come up on the blood results.

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

10

Thanks everyone for asking and replying, I appreciate it. I’m sticking around for a while yet, I want to hear it from the horses mouth before I leave :slight_smile:

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 :wink:

thanks again

xxxxxx

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Ok Beverley, all the best with neuro appointment

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Thanks Blossom. I’m just a bit worried about how bad the withdrawal will be. I feel a bit rubbish this week, all the symptoms playing up, so I think once tomorrow comes ( day before injection where I start to get worse) I’m going to feel proper rough :s I usually have the jab on Wednesdays so by that time the withdrawal will be kicking in. It’s not like I mentally want the jab, it’s my body kicking off that it wants the jab. It’s so odd! But the thought that this could possibly be the reason I’m ill will get me through it.

thanks for your reply. I am going to miss everyone on here, that’s if I hear from Neuro it’s for definate. This place has got me through some tough times I tell you.

xxxxx

13

Hello Beverly. I hope you haven’t got MS, I really do. Have you done your own background reading on Humira? It’s just that your the one that’s been taking it so I think it’s important that you’re fully informed in order to ask the right questions. I am not being negative, I promise! But the nurse in me believes in sharing the correct information with patients. For example! What are the withdrawal symptoms? Were they explained to you? Sorry if I’m being a fuss pot lol :slight_smile:

14

I have since read up on it. In the US there are law firms who specialise in Humira lawsuits! Crazy! There are some people left unable to walk etc because of this. I only read all that about 4 years ago but dismissed it as I was told that it wasn’t that causing the problem. I’ve been through withdrawal before on this, that’s what caused the heart attack at work :s I’ve got everything in that I need. At first I thought it was a money thing, but now I think it’s that as they’ve had so much success with keeping Crohns in remission with Humira, they don’t want to know the bad side of it. It’s only now that my Crohns specialist is interested, and I think that’s because he’s seen how bad I’ve been and seen my MRI. I know that before I started it I wasn’t given much information, only how amazing this drug is, showing pictures of people riding bikes and running ’ look how healthy we are ’ kind of thing.

im hoping it is the Humira doing this, and if it is, that it will make me better coming off it. This drug is very toxic, so coming off it is going to be hard. I’m due the jab tomorrow, and already I know I’m due it, so the next few days will be the worst of it I think. The thought of hopefully making myself better will get me through it. I’m not after sympathy at all by the way, I just like telling the facts and how it is. So I’m quite excited that this may be the cause of it all and that I can hopefully start to feel more human. If it isn’t this, it’s back to the drawing board that’s all.

thanks for asking, I didn’t find your response negative at all :slight_smile: I think for future patients, they should explain the whole lot about Humira before they take it. I was only given half a story. Xxxx

15

Hello Beverly

It’s good to know that you are fully informed about Humira. Also relieved, you realised I wasn’t trying to be negative

I am always wary on forums, when it comes to discussing conditions/treatments…difficult knowing how much the person knows or even wants to know! Just felt the need to risk it on this occasion.

Good luck with it all Beverly…keep us up-to-date!

Noreen

1 Like
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Thanks Blossom, I know where you’re coming from hunni. You’re one of the first people I ever spoke to on here, I will always be grateful for that xx

yes, today is jab day : s I think this one will be the worst and by next week I should be alright. My system is a bit of a bugger, it gets used to treatment quickly and either stops working altogether or freaks out when change happens. I’m not worried by it though as I have got every base covered should I need it.

hope you have a lovely day, I plan on making jam later, my first lot of the year :slight_smile: xxxx