Not sure if you read my last post but here are a few important parts from the neurologist letter:
This lady’s MRI spinal cord shows two regions of demylenation- one at C6/7 and the other at T7, mostly dorsally disposed, accounting for her sensory symptoms.
Her MRI brain has similarly shown multiple areas of white matter hyperintensity, suggesting demylenation. HER vitamin B12 is normal and triple anaemia serology negative. We awaint the results of a few other diagnostic blood tests, although I expect these to be normal. Her ESP and CRP were recently normal.
In summary her clinical presentation and MRI findings would be in keeping with a single episode of multi focal CNS inflammation. Her symptoms were immediately preceeded by a sore throat and swollen glands a month ago that is a well recognised trigger for this sort of problem. However, whether we are dealing with a one off episode that does not repeat itself ever, or whether this may reoccur in the future is not something we could know for certainty for now.
At the moment I am suffering from discomfort in my mid back and some neck pain. I have been feeling slightly dizzy on and off for the last few weeks!! Do you think that this is from my neck pain?
I was just wondering how long inflammation lasts for. This all started 6 weeks ago and its driving me mad! Does this sound like MS?
My GP said that MS does not usually just appear so suddenly which this definitely did. Any advice would be greatly appreciated!! PLEASE
The fact that everything started after a virus is very suggestive of ADEM. If it is ADEM, the symptoms normally reduce after a month or so, but that means that they can last longer than that for some people. So I would guess that your current pain and dizziness are part of the same attack, but if you are worried you should see your GP and / or your neuro.
I’m afraid that the only way you’re going to know if it’s MS or not is to get that second scan in a few months. It’s really too early to say right now. Sorry
Bless you for your replying. My neurologist never mentioned that ADEM to me at all!! And my symptoms keep changing. Like my neck has only hurt a few times over the last month its sooo weird!
I am going on Tuesday night to get all my blood test results he tested me for the weirdest things!!! I will let you know.
I’ve just had a look at your previous post (the letter from your neuro). I think that your neuro has explained things as best as he can for now. He can’t commit to anything at the moment but the fact that he’s suggesting another scan in a few months time says to me that he’s keeping an eye on things.
It may be that the virus is the cause for your symptoms, in which case time will tell but there’s just no way of knowing how long that may be.
I do think that if your symptoms are worsening then it’s best to contact either your neuro or your GP and if the pain is bad then ask if there are any medications that will help.
Unfortunately it is a bit of a waiting game I’m afraid. It’s easy to say I know, but try not to get too stressed thinking about it. It won’t help your symptoms and neither will it change the outcome, whatever that may be.
They aren’t really gettin worse…I mean the beginning symptoms were abnormal sensations and they are getting better its tjust the inflammation is affecting random parts of me like my knee, neck, back, hip…not all at once though! Some days are worse than others…
Yea the neruologist is being very thorough. he does seem to think its more likely a virus but he said these symptoms could take months to go!!
SO ANNOYIN!
How is everything with you? Do you actualyl have MS or in limbo?
my neurologist said last week on the phone that I could have the scan earlier if i wanted…like in the next month or so…but do you think I should wait a bit longer just to give it more time?
Yep, I’d definitely stick with what the neuro suggests too.
To answer your question, yes I have been dx with ms. I saw the neuro for the 1st time in July 2009 and it was confirmed in January 2010. So although it didn’t feel like it at the time, I was only in limboland for a short time really. For others it can be a lot longer. It varies so much. But the feeling of ‘not knowing’ is the same for everyone. It’s very scary.
I think in your case, take heart in the fact that your neuro is being proactive - that’s a big plus! Also the fact that he’s of the opinion that it seems to all stem from a virus - I think - is preferable than some other conditions!
If things aren’t getting any worse but instead are improving then that’s gotta be a good thing! It won’t happen overnight but it sounds as though you’re heading in the right direction. Go with what your neuro suggests and try not to worry.
Karen, if it was ADEM, is this something that jst goes on its own without steroid treatment? I only ask as you know how much i hated taking those steroids and had to stop after one day.
Debbie,yes he is doing a good job i guess and i should be thankful for that…i just hate not having proper answers u know?U got diagnosed really quickly!! wow! How are ur symptoms generally? Are u ok?
As far as I know, steroids speed up the body’s natural healing process. I have read that ADEM responds well to steroids, but that assumes that the patient can put up with the side effects!
If you are getting better, then I wouldn’t worry about it. It might take longer without steroids, but hopefully you’ll get there any way.
Thanks!! No i dont think i CAN!! lol he is going to phone me tonight with all my blood test results. Also he wants me to have a chext x ray but as there are no needles involved i think i can handle it lol. He wont tell me why he just said to rule things out.
I think that i have to accept this could take months to go properley and try not to dwell on it.
He did say steroids would kick start it but it would go either way and i would have to accept it would take longer
I’m a bit up and down healthwise - have been for some time now. I have infections too which have been dragging on for almost 6 months now…just to add to things…grhh…
But at the end of the day I just keep telling myself that there is always someone worse off…it doesn’t always work…lol…but it helps! And laughter helps too…
I don’t like taking steriods either but when I have had them they have speeded the recovery up a bit. It’s the side effects that put people off - they’re not particularly pleasant and of course, like everything else - vary from person to person.
As for accepting things, well that’s a lot easier said than done - I think most of us will agree that it’s very much a personal thing. Worrying about stuff won’t change it though…it’s a tricky one.
I hope things work out okay for you and your results come back okay.
Yea it was my decision to stop taking the steroids omg they are hideous!!! such a high does aswell. 500mg a day!! What the helllll?
Guess i have to deal with the fact it will take longer to go without the steroids. What i dont understand is if this is caused by a virus does it mean i still have the virus or this is the after affects? confused!!!
ahhh debbie.,what infections do you have? So have u found that taking steroids actually make a difference of just speed things up a bit?
you guys both seem so positive im jealous!!! i wish i could be more positive!!
We’re more positive because we’re more used to it all! Familiarity breeds contempt and all that.
500mg-1g a day steroids is pretty standard.
This is the aftereffects of the virus. It’s a bit like if you break a leg - the break might heal in a few weeks, but then you might need physio to recover properly / get back to normal. Your body has dealt with the virus; now it’s in the process of recovering properly.
Yes so true…i need to take a bit of your positivity and apply it to my life. Waiting for neurologist to call me tonight re: my blood tests so will post when i knw them.
Yea 500mg is a lot!!! I am sure he will suggest i go into hospital and have it thru an iv IF i am still suffering alot but i think i would rather wait it out. I just get scared like if i dont take them will my inflammation in my brain get worse? or is it only uphill from here?
I don’t think it will make much difference now if you take steroids or not, but best to ask your neuro when you speak to him. I reckon it’s uphill from now, so try and hang on!
yea my symptoms arent worse they are just different…like this on off balance/dizzy thing but i guess that could even be anxiety! i have some slight discomfort in my back/right hip and my knee injury is flaring up but thats it really.
If you say its uphill then i believe u!! u seem very knowledgeable about tall this!
Oh and the neurologist never called me with my blood results!! why are they so hard to get hold of! now i have to wait to spk to his secretary tomorrow.
I’ve had steroids on two occasions. The first time was when I had ON and lost the sight in my left eye - I had a high dosage of IV Steroids for 3 days at the hospital. The second time I had oral steroids which were nowhere near as strong - and I didn’t have as many (or as bad) side effects.
As Karen said you need to discuss it with your neuro really - as they may not be worth trying now. Best to check with him.
At the end of the day you have to do what you think is right for you - you can only do that by listening to the advice your neuro gives you and then deciding from there. Staying positive is by no means easy - and we’re not always like it - but that’s why this website is so great. Others know what it’s like and offer a great deal of support…and sometimes a gentle boot up the botty if needs be…lol…
Really, at the moment all you can do is see what the results are, speak with your neuro and wait it out.That’s not what you want to hear I know but unfortunately sometimes there is no quick and easy answer and this is one of those times. Try to get on with your life as best as you can, making adjustments where necessary. Have the scan in a few months as your neuro has suggested and take things from there.
