Multiple Sclerosis (ms)

[ConfusedMum]

can anybody give me some info about this? what it is? what happens when you have it? i say 'have it' because i honestly don't have a clue what it is, i've heard of it but that's about it. is it curable? can it be deadly? does it leave any lasting effects? will it ever go away?

i'm asking because my b/f's sister is in hospital at the moment. for the last month-3months she has said she has been numb all down one side - dr's told her she had had a stroke. the past few weeks especially she has been saying her other side is numb and she has been sick alot. she has had 2 or 3 brain scans. once she was told she had 'fuzz' on the brain, 'swelling' on the brain and that she had 'fluid dripping on to her spine' i don't know what the above meant - i'm just repeating what my bf's mum told my b/f. the other day his mum phoned and said that suspected his sister had ms that's why i'm asking. do the 'symptoms' i just listed sound like ms? does it sound like anything else you know? the dr's seem really stumped as to what could be causing these problems. his sister is only 16.

i am going to search for some info about ms now but i guess it's better hearing what ms really is from people who have experience rather than some general doctors information.

thanks for any help!
xXx

[sunflower71]

yes google will help you and im sure someone will come oalong on here soo that has some first hand experience.

[campbellking]

To develop m.s. at that age is extremely rare (most onsets are around the age of 40). Go onto the M.S. society's website which will give you more information. Symptoms and severity vary enormously.

[Eve]

Did the doctors say they thought it could be MS or is it what her mum thinks it could be?

It can be very hard to diagnose neurological problems as a lot of the symptoms are similar for many different conditions. There are a large number of symptoms that can occur with it.

There is a huge scope to MS, different versions such as relapsing and remitting and progressive where it just gets worse. As said about there is a huge amount of info by searching on google.

I had a number of neurological symptoms and had all kinds of tests and MS cropped up as a possible diagnosis quite a few times. I've been seeing a couple of neurologists and looks like mine is now meniere's disease which is the current diagnosis.

As regards age, menieres has a stigma as an old persons disease (my mum was told she was very young for it when she wa diagnosed in her fifties!) so I had some problems getting the help I needed. These kind of illnesses can unfortunately strike at any age.

[parkers]

Hi,

I am 29 and was diagnosed with M.S when I was 21. The M.S website is brilliant and I'm sure will answer most, if not all of your questions. http://www.mssociety.org.uk/
There is also a section on there for family & friends as well, which my family found very useful

Usually M.S will not be diagnosed in the 1st year of symptoms, as it can easily have alot of the same symptoms as a lot of other illness's/disesases (I hate that word).

I am sure that they will carry out many more tests, and may turn out to be something totally different...

I wish you and your bfriend's sister all the best and I'll be happy to answer any questions I can

S xx

[LostStar]

My dad had MS and has had it for a few years. It can take a while to diagnose and there have been a fair few cases where people have been diagnosed inaccurately and they don�t have MS at all!

My dad was first of all diagnosed with Transverse Myelitus/is because he was coming up for fifty (therefore out of the general age range � too old!) doctors assumed he �unlikley� to have MS. After a few bouts of weeks in hospital � losing the use of his legs (which started with pins and needles� then onto numbness � like your boyfriend�s sister) but then after him having a relapse later in the year, more tests were taken and eventually he was diagnosed with MS. (Have the doctors mentioned transverse myelitus/is in your bf�s sisters case?)

His most recent relapse caused which followed directly after him suffering from vertigo (a relapse can be �triggered� by a cold or anything where the immune system is even weaker than it already is) he lost the ability to speak so was admitted to hospital, then lost all of his swallowing reflex. It is common for people with MS to loose their speech but they tend to regain it after a few days.. however my dad was only one of two cases in the world (the other being in Japan!) for it to be so severe and there was so little information on. However fascinating doctors found it, very few know anything about what to do and it was a big game of trial and error which some patronising (but also some nice) speech therapists thrown in, however neurologists and specialist nurses are an absolute godsend and worth their weight in gold.

It isn't 'curable' as such, but at the moment my dad's on a series of Beta-Inerferon injections- which can help space out relapses (however we will only know if it works after a 5year period.)

[LostStar]

Parkers recommendation of the mssociety is totally spot on - especially on the details about the different types and stages. And particularly when you feel like you don't want to bother anybody else with your worries/anxieties but know there are people that understand and are going through the same things. People have the misconception that you can die of MS - you can't as such but you can die from something that was brought on because of a weakened immune system. The best of luck and take care.xxx

[ConfusedMum]

his sister is being transfered to another hospital - one that specialises in neurology (think i spelt that wrong)

bf's mum phoned up and told bf that the dr's had said the nerves connecting her spine and brain wer gone/wasn't working - something to do with the coating that is around them having gone? i don't know what that means, neitehr does my bf - i only know what bf tells me and thats what his mum tells him - i honestly don't think his mum knows her head from her bum at the minute so don't think she knows the questions to ask or can actually take in what's going on.

his sister was going to have her eyes checked out today and was told the test she was to have done would tell them how her brain is responding - after waiting all day to be taken by ambulance (she can't move atm at all) when she arrived was told she was in too bad of a way to do the tests that they wanted/needed to do? :\ bf's mum also said she was told her state was 'critical' - nothing else has been mentioned about the ms since i asked the original question :\

nobody seems to know what is wrong with her. she's slurring her speech and is hardly awake, can't move either. she does actually have a condition (i say condition because i dunno if it's a disease or not) where her immune system is weak - she either has a low red or white (which ever one fights bacteria) so she does get every bug going anyway.

xXx

[Eve]

It must be a very hard time for you and the family and I so hope you get the answers you need soon so she can receive the best care possible.

Loststar, that's really interesting reading and sounds horribly familiar in parts. I have had vertigo for a while (hence the link with menieres disease which my mum also has) ended up in hospital after losing the feeling in my legs a number of times and have suffered a lot with the pins and needles and numbness.

MS is actually a lot more common than many people think and there is a large amount of support out there.

The coating you mention could be the myelin sheeth which covers the nerves and is destroyed in ms. This gives quite a good simple explanation...

http://news.bbc.co.uk/1/hi/health/medical_note s/92908.stm

Is there anyway your boyfriend could arrange to be there when the doctors are there so that he can get some more inormation?

[ConfusedMum]

it's the nhs isn't it - nothing is ever done on time/straight away always seems to be alot of waiting around and my bf works and we have a 10month old babie too, so being there all the time just isnt possible :(

xXx

[LostStar]

It is so annoying when you are waiting around and not being told anything! Lack of communication can be so frustrating.

I agree wih Jenna1978 that it sounds like the myelin sheath. If at all posible to have family friend or someone there when the doctors are giving explanations? It is impossible to take in everything you are being told especially with the shock of the situation anyway and with someone else there, 2 brains are more likely to remember more than the one. :) I really hope that answers are found soon. If your bf's mum feels like they are doing lots of tests but not really explaining what for/ what they find afterwards - make sure she keeps asking and eventually someone will sit down and explain as best they can whats going on. Doctors get so busy which can mean you feel ignored. But if she is now at a neurolgy hopsital, she really has the best chance of being treated with people who have the best knowledge. Take care of yourself.xxx