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new to ms please help feeling really confused

Dj1021

Need help feel so confused???!

Ok I really need some help I have just been diagnosed and I need to hear from some people about there experiences and to see if anyone has had one similar to mine

it all started on October 8 I got a sudden sharp pain in my head and long story short on October 12 after 2 hospital visits and 1 doctor visit they finally took me serious and kept me in. I got dizziness and severe head pain and face muscle loss on right side I couldn’t taste things and loss of balance I looked like I had a stroke. It was a very severe attack. Especially for someone who didn’t even know they had ms.

so a few months later I was disavowed with ms. 6 months exactly after I got 5 days of tingling very slightly in my arm wer I had it before except it was no wer near intense I could hardly recognise it. However I went to the hospital because my wife made me and a few days prior to this I had my MRI scan because I was due my 6 month check up and it found out that I had 2 New lesions or my brain. So the nurse and the hospital then said because it lasted less than a week it wouldn’t be classed as a attack and said people go there whole life’s with flare ups because of the lesions scared the brain it s just letting you know there still there ect.

After that I got diagnosed with relapsing remitting ms by another doctor who then told me that having two attacks in the first year isn’t a good sign and he wants to put me on tysbari. I’m just abit concerned I’m getting my first course so tysbari on Monday. But apart from the first major attack and that tiny flare up that didn’t even bother me I haven’t had nothing at all to say I suffer with ms. And now I have to start tysbari I’m scared that this is going to make me start getting things tk make me feel like I have ms ? Dos this make any sense. I’m completely fine without it and I’m scared if it’s going to make my body prone to it. I really need some advice and hope someone can help me on this and help me calm down or whatever I so sorry but I’m so confused. My brother in law specialises in ms and he recons I shouldn’t have been diagnosed so quickly ? Please share your stories and help me know if anyone has gone through something like this before. Thank you so much

I think I understand what you mean. Although I wasnt put on medication straight away, I found myself almost panicking every time I had a new/strange/different sensation. Is this it? Is this the MS? I suffered with “peculiarities” for years and because they were all too minor to bother a Doctor with I never really paid them too much attention. Of course, when I got my diagnosis I realised that the pins and needles, the restless legs and the electric shocks were actually all symptoms of MS, but now that I had an explanation, I tended to worry about them more.

I am also a skydiver, but as soon as I got my diagnosis I had to fight tooth and nail to get a Dr to sign me off as fit to skydive. It was ridiculous. On the Sunday I spent the day doing five jumps, got my diagnosis on the Wednesday and was told I couldnt skydive anymore. The way I see it, I spent a good four years skydiving with MS, buy just because a Dr put the two letters M & S after my name, I was no longer fit to something I loved.

I have recently taken myself off all medication as I found the anxiety and depression that they caused me too much to handle and have decided to take my chances and see how I get on without any assistance, for the time being. I also got my own way after much foot stamping desk thumping, and got the seal of approval to carry on jumping.

My only advice to you is to think long and hard before making decisions. There isnt a huge rush to get medicated. Get all the facts, talk it through with the medical team, talk to those closest to you and make the decision that is right for you at the time. And, if like me, you decide six months down the road, that the decision no longer suits you, go back, talk to everyone again, think hard and make a new one. It’s YOUR MS - and try to remeber - You have MS - MS doesnt have to have you!

There isn’t a huge rush to get medicated but … there has been evidence that starting on a powerful drug soon after diagnosis can change the course of your disease and mean that you end up without major disability. I wish I had been offered this option when I was diagnosed, with very minor balance and reflex abnormalities, fifteen years ago. I am in a bad state now - unable to walk very far and having to use a wheelchair when out and about. But for the first six years after diagnosis, you wouldn’t have known there was anything much wrong with me.

So it’s fine to wait to go on medication, but be aware that the medication may not have such a good effect if you do wait.

Please don’t be rushed into anything, the medication will still be available to you if you need more time to decide. I’m not sure I fully understand your post, but it seems to me that you need to do a lot more talking & finding out about your MS before you make a decision. Is your brother-in-law a neuro? It’s very important to only take advice from people that understand your condition.

Good luck with everything, let us known how you get on

Rosina

Hiya

I get what you mean. I was diagnosed in 2005 and have only just started on Rebif as I got to the point where I was deteriorating very fast and felt that I had to do something to try and help myself stay as mobile as possible. The Rebif has been working very well and no side effects which is good.

Just wait til you are ready. You will know when that time is.

Good luck.

Shazzie xx

Meant to say also that if you try Tysabri, if that is what your neuro has advised, if you don’t feel that it is right for you then just say that you want to stop. I am sure they will listen to what you want. Like I said you can always wait and try it later.

Not sure that I understand why your brother thinks that you were diagnosed too early. The earlier the better I reckon. I thought I had a brain tumour so the diagnosis came as a bit of a relief.

x

Hi there,

I can appreciate your fast diagnosis must have come as a bit of a shock. However, some people have to wait literally years for a diagnosis, so I think most would say it is a positive thing to be diagnosed so soon, and to be offered treatment so quickly.

I am not quite sure why your brother-in-law thinks you shouldn’t have been diagnosed “so quickly”. If all the evidence is there, there is no barrier to early diagnosis. The reason many people get stuck for years without a diagnosis is there is insufficient evidence - e.g. no abnormalities on MRI. However, if you have had two distinct episodes - albeit one mild - AND there has been evidence of renewed activity on MRI, that is usually sufficient to diagnose. I don’t know why your brother-in-law feels you would benefit by putting it off, and delaying access to treatment.

I cannot speak from experience, but I guess it is not always a good thing to have a family member “in the business”, as it were. I am not disputing his credentials, but as a relative, he cannot be completely objective. There may be an element of wishing/hoping you did not have MS, which is shaping his thinking. None of us wants a relative to be diagnosed with a serious illness - even if it’s not a blood relative. So there may be an element of wishing things had been too hasty, and that it still might turn out to be something else - because you are NOT just any patient, but his B-i-L.

I do understand your reservations about Tysabri, because it is one of the “big guns” as it were, and there is a very small but not completely insignificant risk of serious side effects. However, I’m sure the pros and cons have been explained to you, and ultimately, it’s your choice.

One thing I have never heard about Tysabri, or any of the disease modifying drugs (DMDs) is that they make MS worse. The whole point of them is to try reduce or prevent future episodes, and Tysabri is one of the best at doing that. So it would be completely crazy to prescribe it for you if it was going to “encourage” MS in any way, or make your body “more prone” to it. That’s exactly the opposite of what it sets out to do.

Of course, being on any medication at all - even just for symptoms (which I’m on) does increase awareness of being “not well”. When you are having to take stuff all the time, it’s no longer possible to pretend it’s not an issue - but that does not mean treatment is actually encouraging your MS. An unpleasant reminder all is not well, of course - but it’s important not to confuse the two.

Even at this stage, it’s not too late to pull out, or say you need more time to consider, if you are not completely convinced about why you are having this medicine, or have unanswered questions. I don’t suppose they would be very pleased, as the appointment could have gone to another patient (or do you mean next Monday, rather than tomorrow - in which case there’s a chance it still could). Tysabri is still quite a hard drug to get, and not usually recommended unless it’s felt your case really merits it. So if they’re saying your case does, I would think very hard before rejecting it, as they don’t prescribe it for no reason (I’ve been diagnosed four years, and never ever been offered it, so that tells you something). It’s not given lightly, and not given on the basis it might make MS worse - trials would have discovered if it did. However, you are still free to reject it. It’s your body, and only you can decide what goes into it. There is no “right” answer, as different people are comfortable with different levels of risk - both the risk of the illness itself progressing AND the risks of any treatment designed to curb that.

If you feel you are being railroaded into anything, and haven’t had the chance to discuss or consider it properly, then don’t be afraid to say that you are having second thoughts, and need more time. If, on the other hand, you know deep down you are doing the right thing, and there is nothing left you want to ask, then go for it!

I’ve no personal experience of Tysabri, but most people on this forum who are on it seem very pleased indeed.

Tina

x

Hi, welcome to the board.

I’m not surprised you’re feeling the things you are. The diagnosis is a massive shock, and there’ll inevitably be a lot of fear. It’s scary when weird things start happening to our body, and scary to be faced with so much uncertainty about what might happen in the future. Small wonder that we all want to block those thoughts out of our head, and to carry on like nothing’s changed.

And as for whether or not to start Tysabri, that uncertainty about the future means there’s no way of knowing what the ‘right’ decision is. As Tina has said, it won’t make the MS worse. The worse that could happen is just feeling any possible side effects (though as a long-term Tysabri user, one of the things I like about it is the almost complete lack of side effects) plus, of course, the monthly reminder that receiving your next dose means you have MS. Personally, I wish I’d started taking medication earlier. But I can only say that with the benefit of hindsight, and it’s a choice that only you can make, not your doctor or anyone else.

I hope all our replies are helping you to feel more reassured : )

Dan

I have Secondary Progressive MS and when it was still Relapsing Remitting I was offered Tysabri but turned it down because I was worried about Progressive Multifocal Leukoencephalopathy (rare side effect but one I was concerned about). I now take Azathioprine (cancer is a side effect of this one – not 100% fatal so I can live with this one). It took about a week for me to be diagnosed in hospital. My thinking was to start on medication straight away to alleviate my symptoms (vertigo, neuropathic pain, and spasticity are ongoing symptoms for me).

Not a very good idea to start Tysabri and then stop it, I’m afraid - you are quite likely to experience bad ‘rebound relapses’. So you want to think hard before you start it. Maybe talk to your neuro some more?