ms or not ms ?

New diagnosis and before diagnosis
1

Ms or not ms ??

I recently fell I’ll over a period of ten weeks started off with blurred vision ( which lasted a couple of days ) bad head aches( whitch still go on ) wobbly unsteady on my feet ( which I still have ) confusion , constipation my right leg I couldn’t move for three days that happened twice almost like dragging a dead weight round , tiredness
I have been under the gp who has been quite good although not telling me what’s wrong his signed me off work for the whole time and given me pain killers and come out to see me when I couldn’t get in .ive seen a neurologist who admitted me to hospital done a MRI ,ct scan and a lumber puncture as well as loads of blood tests she says that there is inflammation on my brain and more white blood cells in
Spinal fluid than there should be but thinks it might just be a dymilinating episode ( what ever one of those are ) while I was in hospital they also gave me three days of steroids
The doctor who I saw when I was discharged said “well u have ms” so matter of factly like I should of none but really nOw I don’t know what to think I have an appointment to go to addenbrokes to see ms doctor for more tests but just wondered what u guys thought I don’t know really what to think and am soo worried . :frowning:

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Hi Coley, well no wonder you are so confused and worried. You have been given very confusing information and somebody at some point should have sat down with you and explained exactly what’s going on.

I’m going to be very honest with you. I think by what you have written that it does sound as if you have MS. I’m sorry Coley that’s a hard thing to write and I am not a doctor and I might be wrong, but putting your symptoms together and the (terrible) information that you have been given, and by what the discharge doctor said (how insensitive what that!!!) it does sound as if they are thinking MS.

Because they gave you steroids (did they help?) it sounds to me as if they are thinking you have relapsing remitting MS (RRMS). This is the most common type of MS and it means that there are drugs that can really help you. Most of the people on this forum have RRMS. It means that you will have relapses sometimes, when the symptoms come back, but it also means that you will have remissions, when you will feel well. The remissions can sometimes last for a long time.

It is also possible that you will only ever have the one episode that you have had. From what the doctors said it sounds as if they are thinking that is possible.

What you need to do right now is find out a lot more about MS… go to the ‘What is MS’ bit on this website and learn a bit about what it means. One thing that it does mean is it’s NOT the end of the world!

People with MS work, drive, get married, have sex, have children, drink, play sport, go on holidays… in fact all the stuff that other people do.

There is loads of research going on and new treatments all the time, and they are looking at finding a cure in 10 to 15 years.

When is your appointment for the MS clinic? Very soon I hope.

Coley have you got family or a good mate that you can talk about this with? It really helps to talk.

I really think you have had some bad treatment with nobody giving you any good information, but I think you will have much better treatment at the MS clinic. They will hopefully be able to confirm if you do have MS and give you loads more information.

Ask more questions if you like. In the meantime, take care, take it ‘one day at a time’ and talk to someone. If you have no one to talk to phone the helpline for this site on 0808 800 8000.

Thinking of you ((((((((((((((((((((((((((hug))))))))))))))))))))))))

Pat x

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Hello, and welcome to the site

As Pat says, it is very possible that you have the early signs of MS, but I did want to add that it is also possible that what you have is a different condition called ADEM. The good news about ADEM is that it is a one off “demyelinating episode” - basically an infection or virus or something like that triggers the immune system to do a kind of one-off attack of MS. However, unlike MS, the body can deal with ADEM so that people never get it again.

Unfortunately, it can be tricky to tell the difference between ADEM and a first attack of MS. And there are also other possibilities that the neuros have to consider. This is why neuros don’t diagnose MS until someone has had more than one attack. Because of this rule, I’m guessing that the doctor who blurted out that you had MS was actually not qualified to do so. They may even have been wrong!

It would be a good idea to talk to your family about your medical history growing up before your next appointment - did you have any strange episodes or symptoms that might actually have been neurological? This is the kind of information that the neuro will be very interested in and will help him or her to make a diagnosis.

I hope you don’t have too long to wait to get some answers, but it’s probably best to be prepared for a bit of a long journey - neurology is very complicated so it can sometimes take a long time to work out what’s going on.

Karen x

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Hi Coley,

No wonder you are so worried! What shock news…and not given to you in the best way possible either.

I guess there’s no easy way to tell someone they have, or may have, MS but it could have been dealt with a little more softly.

I hope you have plenty of support while you are going through this.

Karen, what is ADEM? I haven’t heard of that before. Is it the same as CIS?