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First vist to the Neurologist - scared

(23 Posts)
poppyknot Thu 17-Feb-05 14:05:00

I am going to see a neurolgist tomorrow - first visit on the way to a possible diagnosis of MS.

Optical neuritis last summer was followed up by an MRI scan. I had checked out the ON on the internet and it mentioned that it was a sure(ish) early indictor of MS. The health workers I saw didn't mention this at first so by the time my GP brought it up I was prepared - was still in a state of shock though. My physical symptons are so slight that I could be imagining it.

Months later I have my first Neurology visit - delayed for various resons.

As I have only discussed the prospect in theory, I am still able to function quite well. DH is supportive in a quiet way. A few people at work know (these appts) and one friend.
ONe of DH's friends has MS and functions more or less as normal but I know that there are various forms and that it is diffucult to say which one you might have.

I am so worried that from tomorrow all my prospects will seem different. 'Small' things are starting to worry me - filling in forms where there is a health question etc.

I can't begin to think about how things will be for DDs.

Sponge Thu 17-Feb-05 14:12:08

Oh Poppyknot I really feel for you.
My mum was diagnosed with MS about 15 years ago and it was a terrible shock even though some symptoms had been there for some time. However 15 years on she has deteriorated only very slightly - she still walks, gardens, drives, runs the house etc. She limps a little bit, especialy when she's tired, her grip in one hand is weakened, she has trouble walking long distances or fast. But she does function normally and if she didn't tell you, you wouldn't know.
The very best of luck and I hope you have the best possible outcome.

Jimjams Thu 17-Feb-05 14:15:14

good luck poppyknot

Just some advice- if it does turn out to be the worst case scenario, and you do end up with a dx of MS, then before you do anything else seek out some others (either on the internet or RL- although internet is easier when its all new I think) with MS. These people will become a support lifeline. They will understand what the dx is like, what living with MS is like and the afffect on family life. And they won't ask stupid questions, which 80% of non--affected people will (and you'll have to grit your teeth and remind yourself that "they mean well"). They also won't get embarrassed or not know what to say. And they'll have all the tips on getting help etc if needed in the future (as professionals don't tell you what's out there!)

Will be thinking of you, sending positive vibes and have everything crossed.

poppyknot Thu 17-Feb-05 17:12:45

Thanks for your messages. I am already getting used to not really answering the q 'How are you?'

The name itself of so scary and the only famous person I knew of who had had it was Jackie Du Pre. Apparently her type was the most serious and unusual but the worst of it (at the moment) is that they cannot give you a prognosis early on. My parents are quite old and it might be that I don't have symptoms in their lifetimes. It is so hard to know who to tell and when.

It is just so disheartening to think that I will be (might be.....) 'ill' for the rest of my life even if not badly so. Looking into the future needs a different perspective.

Anyway thanks for the good wishes. I have seen a couple of Mnetters talk about their experience of MS - and lots of other things as well!

JoolsToo Thu 17-Feb-05 17:29:50

Just seen your message - sending you much good luck!

expatkat Thu 17-Feb-05 17:39:46

Poppyknot, hope this makes you feel better.

My dad, an opthalmologist, had a young secretary a few years ago, who complained of vision problems. He examined her, and found evidence of what I guess was optical neuritis. He was very worried about having to tell her it might be MS (a disease he knows nothing about, because it isn't his field), but when he did, her response was really surprising. She said, "Really? Well my mom and my aunt have it--it's really no big deal."

It seems to me that in more cases than not, it can be a really mild disease. My dh also has a friend with MS--you'd absolutely never know, and he has little flare ups once in a while that pass and then he's fine.

Good luck at the nuerologist tomorrow. It's totally natural you'd feel stressed--I feel stressed whenever I visit the doctor, and this probably feels all the more daunting. Please keep us posted!

Weatherwax Thu 17-Feb-05 17:57:03

Please don't panic. I know what it feels like, I was diagnosed in 1990 and at the moment I seem fine, although I did have neuralgia at the end of last year which may have been connected with my MS although my own dr is sceptical.

My neurologist at the time told me to try to stay positive. He said that the advice used to be given out so that they didn't have to cope with so many depressed people but then he said that this advice in itself seemed to work. He also said that it only took 2 years off my life expectancy. Some people get it really bad but do not assume you will. I really hope you do not.

If you have any queations I'd be happy to answer them, I might pop back later with some other thoughts but I must see to my two DDs - who I thought were wiped out of the equation when I was first diagnosed. Take care

tamum Thu 17-Feb-05 18:21:13

Good luck poppyknot. I have 3 friends with MS, two of them quite close, and as you say, it's a tremendously variable disease. One friend started with optic neuritis and was initially badly affected for about 2 years but she has stabilised and even improved since then. I'm pretty sure it's 20% of cases where there are no further signs of the disease after the initial presenting symptoms, and 60% that are relapsing/remitting. Two of my friends swear by interferon, the 3rd doesn't.

I'll think of you tomorrow.

Twiglett Thu 17-Feb-05 18:29:51

good luck poppy for tomorrow

can I just say that whilst I wholeheartedly agree with finding a suitable support group, should you get this diagnosis, that you should take care with regards to online groups .. by its very nature the internet tends to attract posters who can be affected quite severely by variable diseases.. eg I am a member of a support group (have been for about 4 years) for DH's illness, he is moderately affected by a disease which takes different paths for each person (from very mild to very severe so in a way it can be similar to MS) and there is no way of knowing how he will be affected from one month to the next .. anyhow I found over time that a large proportion of those posting on this site were quite seriously affected and so I was getting the worst possible scenario much of the time .. just a word of caution

best of luck

geogteach Thu 17-Feb-05 21:32:47

Good luck for tomorrow, I have some experience too as my sister has relapsing remitting MS

hatsoff Thu 17-Feb-05 21:58:26

Dear Poppyknot, firstly big hugs. It seems you are pretty much where I was 5 years ago - I was diagnosed quite rapidly after ON and trigeminal neuralgia and an MRI scan. It is very scarey I know. My advice would be - do some research - look at the mssociety website, and there's another I'll get back to you with, and go equipped with your questions, write them down and don't feel shy about asking them. Everyone's different, but for me, going to appointments with my dh has been really good - he gets less flustered, is more direct in his questions and as a quasi-scientist (avid reader of New Scientist, Scientific American and general pop science) has a much better understanding than me. It's worth noting that the National Institute for Clininal Excellence guidelines on ms recommend that after diagnosis people should be offered a follow-up appointment very soon after, for questions etc - ie acknowledging that your mind is spinning and you can't (as my neuro expected me to do)just "go away and get on with life and not worry". They also say taht you should be absolutely clear where you go for help (again this didn't happen to me and reccetnly resulted in a bit of an appointments fuck up). Ask them if they have an MS nurse - they will often be your first point of contact.

I can't pretend that a diagnosis isn't a big shock but, as many have said here, it is frequently a disease you can cope with very well indeed - I have been virtually symptom free for 5 years. But the lack of prognosis is difficult to come to terms with.

When I came home from the hospital after diagnosis I played my favourite piece of music ever and sat and stroked my cats. And all I could think was "the music's still beautiful. the cats are still gorgeous. life hasn't really changed that much" It's a difficult thing to say to yourself. But I would really recommend - if it does come to it, to find yourself something in life you really really love (I had a baby in my belly but not one running around so had to make do with cats and music)and remind yourself how much, how wonderful they are. They're still there for you.

hatsoff Thu 17-Feb-05 22:27:21

the other website I was thinking of is www.mstrust.org.uk

tamum Fri 18-Feb-05 18:43:29

Poppyknot, how did it go?

hatsoff Fri 18-Feb-05 18:57:50

hi poppyknot, hope you're feeling ok

MancMum Fri 18-Feb-05 19:28:48

Been thinking about you today - hope you are OK with what ever happened and you are out doing nice things tonight...

happymerryberries Fri 18-Feb-05 19:34:17

How did it go? I hope that you are feeling OK.

Dh's aunt has had it for over 30 years and she is still hale and hearty and enjoying life to the full. She is currently planning the wedding of her son, who she had just after her diagnosis

poppyknot Tue 22-Feb-05 13:44:34

As I thought, the neurologist confirmed MS, mostly based on the recent history and a few reflex tests.

There is a super MS nurse (one of those people who is immedialty likeable and fills you with confidence) who will come to my house and talk things through.

At the moment I just feel in limbo - I have a terrifying 'label' now but in some ways i don't feel different. (with Dds, work, etc). It's my moments with my own thoughts that are hard. It is coping with a raft of what ifs all of a sudden.

I told a friend at the weekend. She works at a health centre and immedialtly saw it as not a necessarily devastating illness. I am not sure about others who have no knowledge of it and will keep on a need-to-know basis.

I am still unwilling to tell my family just now. I will have enough support from DH, MS nurse a few friends. There are various reasons for this.

Has anyone else kept such news from near ones?

Anyway thanks for your kind messages. As hatsoff said there are still a lot of wonderful things.

MancMum Tue 22-Feb-05 19:57:51

so sorry to hear this == was really hoping you would get better news... as for telling people, I would not... I think people label others very quickly and you are a person with MS and have 100000s of other things going for you that you want people to know you for... only tell those it effects... you might feel liberated from the condition when you are with people who don't know... just my view anyway... hope you get the support you need. I know of a couple of people with MS and they are still leading full lives years after diagnosis - one has in fact just bought a yacht in Tenerife where he lives!!

poppyknot Wed 23-Feb-05 13:54:35

Thanks mancmum - those are my thoughts. I don't want to be seen as 'soldiering on' or brave or anything. The only problem is learning to deal with 'throw away' phrases that you don't notice until they hurt. 'At least you've got your health' 'It can't be that bad.....' etc.


THe MS nurse has phoned but is out of the office (snow of course!) so I will have to wait for an appt.

I think that that is what I am gearing myself up for. I do feel the need to talk it through with someone who 'knows'.

Just being able to witter on mnet is helping. Thanks for the space..........

MancMum Wed 23-Feb-05 13:59:59

I guess we all have our own personal pain that is often hit by throw away commnts.. mine is infertility and the loss of my DDs twin when 12 weeks pg after years of trying and IF treatment... only to get comments such as "Well at least you have got one" "it was not a real baby" etc etc...

I guess what I am saying is that throw away comments will be there all the time despite whoever knows that you have MS and so I thnk you should stick to your plan of need to know only.. I hope you get to talk to your nurse soon - and that you are doing OK

poppyknot Wed 23-Feb-05 16:59:27

Thanks again mancmum. Those comments to do with mc seem particularly crass. People do seem to feel they have the right to comment about gaps between children or the age at pregnancy, as if it was something totally within yr control.

as you say it is 'personal' pain and we all have it somewhere.

A friend of a friend used to have a line in comments which always began with 'At least........' that were sometimes beyond belief.

Anyway, Big hugs to you (((((())))))

Twiglett Wed 23-Feb-05 17:16:53

Sorry you got the diagnosis you didn't want, it sounds like you are going to have excellent help I am pleased you felt comfortable with your nurse.

As for not telling other members of the family, I can totally understand that .. DH's family barely know what is wrong with him, and that's the way he likes it .. the one time his mother noticed his foot (he has a few fairly deformed joints which makes his big toe bend inwards at about a 45 degree angle) she told him that he needed to keep putting things in between his big toe and next toe and use a mushroom poultice that would sort it out for him .. PMSL .. the man has a degenerative arthritic condition FGS

so you do what you want to do and tell those you wish to

good luck

poppyknot Thu 24-Feb-05 14:03:56

The MS nurse is coming tomorrow.

Physio was mentioned at my hospital visit, twice a week.

With 2 DDs this might be impractical, as I work three days a week. My legs feel fine and I am worried that I am being swept into the MS system. One minute its these practicalities that concern me, the next it's the deeper implications with mood swings in many directions.

for the above but for all the kind thoughts.

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