New and not fully diagnosed

[-Kaz-]

Tania

 

I would definitely get the MS nurse's number, from the neuro's secretary if you have to, and contact them. They are invaluable as a first point of call when you have numerous questions, as i'm sure you do. It was 3 months from first symptoms to diagnosis for me and i was sent home and just told to 'get on with it' by a very unhelpful neuro. I had no contact numbers/info given to me and i found out everything i needed to by myself, like Christina.

Fortunately i have a different and very nice neuro now!

[Lindyloo]

Hi Tania

 

I so sorry to be so late welcoming you.... the advice i can give you is the same as the rest of the brilliant advice given... but do listen especially to what some of the people here say about drinking water..

 

We are all here for you so BIG BIG WELCOMES FROM ME!!

 

Kaz, when i was diagnosed 9yrs ago - i was the same as you just told to go home and get on with it - sad aint it?? The help i have found here and the friends i have made is so so fantastic... I used to be very alone with my MS and i never get to meet or chat to people with MS until i found this site 1yr ago.. Whats even more sad in Ireland we dont have a nurse to call... So this site is the BEST with the BESTEST people in the world on it thanks everyone and big hugs Tania xx

[-Kaz-]

Yes Lindy it is sad that people are expected to find out for themselves how and where to get the support and advice they need.

 

It is useful for people to have the help and advice of an MS nurse should they need it so it's a shame you don't have that option.

This is a really useful website as an alternative support network though!!

[Tania B]

Lindyloo and Kaz,

 

Yes I agree that this site is very helpful and so friendly.

 

I did phone my neuro's secretary on Thursday to find out about the nurse. The secretary was on holiday but my neuro happened to be sitting at her desk and answered the phone. He told me that the nurse was to be mentioned in the letter he dictated a week ago and which was not typed. He also warned me that the nurse might be cross to be asked to see me before being positively diagnosed. Apparently my MRI scan was not 100% normal and nothing was certain yet. The LP appointment would probably be a bit delayed because it is holiday time, rather like Xmas, there can be delays but he didn't think that there was much of a waiting list.

 

Sorry to waffle on a bit. Thinking of you.

 

Tania

[Dianni]

Hi Tania.

 

You haven't waffled and even if you had, you are allowed to waffle away to your hearts content here. It's one of the many reasons I love this site!

 

It was lucky your neuro was sat there lol. I have wondered whether neuros knew where their secretary's desk was at times!

 

It's annoying that the world seems to come to a stand still during school holidays, especially summer and Xmas. It doesn't help anyone who is worried/frightened/waiting! Everyone is entitled to a holiday, but when I was working I always made sure my case load was covered. It nwasn't me being a super star, it was the policy.

 

Hopefully you wont have to wait too long to see the nurse and in my opinion, whether she is happy with the referral or otherwise is not your problem. That's between the neuro and nurse. I would certainly expect her to be professional in her dealings with you. From everything I have read, heard and experienced, MS nurses appear to be well informed, highly motivated and genuinly willing to help. I sincerely hope that you have this experience.

 

Please keep us informed as to how you are feeling/coping and if there's anything any of us can do, even if it's a virtual hug, remember we are all here for each other.

 

Hugs

 

Di

xxx

[Christina]

I wasn't definitely diagnosed when I saw the MS nurse either so don't feel guilty about that Tania. Best of luck with it.

 

Chris x

[-Kaz-]

He told me that the nurse was to be mentioned in the letter he dictated a week ago and which was not typed. He also warned me that the nurse might be cross to be asked to see me before being positively diagnosed. Apparently my MRI scan was not 100% normal and nothing was certain yet. The LP appointment would probably be a bit delayed because it is holiday time, rather like Xmas, there can be delays but he didn't think that there was much of a waiting list.

 

Tania

 

Is it just me or does anyone else think the made a really unprofessional remark?

To tell a patient, whether confirmed DX or not, that the MS nurse may be cross to see you is an insult. I don't suppose he stopped for a minute to think of how cross you may have been at such a remark when all you are looking for is some answers.

My MRI was not conclusive either and the frustration of having to wait for an LP can only add to the stress of your current situation.

Unfortunately it seems to be quite common for most people in the early stages that they end up having to find out a lot of things for themselves when all it may take is one person, such as an MS nurse, to answer a few questions.

Dianni is right, whether the nurse is happy or not to get the referral is not your problem, you are entitled to seek help and advice wherever you can get it. Do not feel guilty at insisting you see somebody who you think may be of help to you. I wish i had in the beginning!

I also agree though that on the whole the MS nurses do a great job.

[Hezza]

Really pleased to hear that you at least have some idea of what the next steps will be Tania. Like Dianni I am impressed that the Neuro was at the desk and took your call - he could easily have ignored the ringing phone, especially as I'm sure he knew there was a chance there would be a worried patient on the other end.

 

Is it just me or does anyone else think the made a really unprofessional remark?

 

You know your comment made me think how hard it must be to be a doctor or nurse of any kind, Kaz, because all of us patients are so different in what we want and how we need it to be delivered to us.

I would welcome such a remark from my Neuro, whether or not it is professional, because I like my doctors to be open and honest with me and if they talk to me honestly about the other professionals I have to see and why I might have to wait longer for tests then I have more faith that they will have the same open approach about the bigger stuff too. I can see though how the same comment could upset other patients.

 

Tania try not to fret too much about what the nurse thinks about getting the referral. The sad fact is that in many places there simply aren't enough MS nurses and so they tend to be incredibly busy. If she is as good, and as caring and professional, as any of the MS nurses I've ever met then even if she has been irritated by the referral she wouldn't dream of letting you know it.

[Michelle]

I agree with Kaz. I think it was an unprofessional remark,even if it was the truth. Hope you're not scared of the prospect of a "cross" MS nurse calling you, or turning up on your doorstep Tania. The good news is; we have a couple of fish to hit him/her with if they are nasty to you.

 

Regards

 

Michelle

 

P.S Here's another thought on the matter. Maybe the neuro meant he/she would be cross with him.

[debzsanderson]

I really think that when people are newly disagnosed they should be given a booklet containing benefit information and any useful telephone numbers like the MS society, MS nurse etc. One thing that I discovered by chance is how to get a RADAR key for disabled toilets. We spoke to someone by chance who mentioned that we could just go to the council offices and get a free key - really simple and made a whole lot of difference............ Mark was diagnosed in 1993 and since then has had only two Nuero appointments!! We have had to discover about benefits and for the last at least three years I have looked after Mark on my own because we didn't know about Direct Payments until we had a crisis and the ms nurse and social services intervened - we get the maximum amount and so can now pay for extra help and I get to go out without worrying about care.

 

debz xx

[Michelle]

I agree Debz. It is really quite shameful how some folk are treated,and it would be very helpful, if you were given concise information at the beginning.

 

 

Michelle

[Tania B]

Thanks everyone for your continuing support. I'm finding being on the site very helpful. Yes, it is very possible that the neuro may think the nurse would be cross with him rather than me. Whatever happens I'll probably have to wait to my next appointment in November to find out the results of the LP. From reading the posts here just getting an appointment sounds like luck in some areas. I can't seem to stop myself reading up on MS, which is making my husband quite cross. I'll talk about my symptoms and he often says nothing. I told my sister that I was due to have a LP and had suspected MS and she just said 'Oh'. A friend who I hadn't seen for quite a while has been supportive but asks more questions than I can answer. I feel as though it's best to keep quiet at the moment.

 

Tania

[Christina]

Hi Tania

 

Husbands and other family members can sometimes be funny about finding out too much about MS when the diagnosis isn't firm. It's almost like they would prefer to think it wasn't really happening but also maybe he's worried that you will frighten yourself too much and that maybe you don't need to because it's not definite diagnosis yet. It doesn't make it any easier for you though, when you can't talk things through and you probably feel like you want to, especially with your hubby.

 

Chris x

[-Kaz-]

You know your comment made me think how hard it must be to be a doctor or nurse of any kind, Kaz, because all of us patients are so different in what we want and how we need it to be delivered to us.

I would welcome such a remark from my Neuro, whether or not it is professional, because I like my doctors to be open and honest with me and if they talk to me honestly about the other professionals I have to see and why I might have to wait longer for tests then I have more faith that they will have the same open approach about the bigger stuff too. I can see though how the same comment could upset other patients.

 

Hi Hezza

I too would always welcome an open and honest account of what i need to be told from any professional rather than being kept in the dark. I just think that being told the MS nurse would be cross, without any further explanation as to why, seemed innappropriate and unprofessional, but that's just my opinion. :-)

I suppose they do have a difficult job though in gauging patients reactions, some prefer to know more than others and unless you ask a lot of questions, they will likely only tell you the bare minimum! If you want some answers ask, ask, then ask some more!!!

 

 

I can't seem to stop myself reading up on MS, which is making my husband quite cross. I'll talk about my symptoms and he often says nothing. I told my sister that I was due to have a LP and had suspected MS and she just said 'Oh'. A friend who I hadn't seen for quite a while has been supportive but asks more questions than I can answer. I feel as though it's best to keep quiet at the moment.

Tania

 

Hi Tania

 

Husbands and other family members can sometimes be funny about finding out too much about MS when the diagnosis isn't firm. It's almost like they would prefer to think it wasn't really happening but also maybe he's worried that you will frighten yourself too much and that maybe you don't need to because it's not definite diagnosis yet.

Chris x

 

I thought it quite odd at first that my partner didn't want to know too much about ms. He simply wanted to know how and when it affected me as we got to know each other and if there was anything he could do to help. Even now he doesn't know all the ins and outs of it. I'm really lucky in that he is very, very supportive and nothing seems to faze him at all, so i have accepted that it is just his way of dealing with it!

I can see though how it might come across to some people as feeling as though they don't care. But men do deal with things much differently than women......it's not necessarily the right or wrong way, it's just different.

Incidentally, my family find it harder to deal with than any of my friends, even after 10 years, so don't be too hard on your sister, it's possible that she doesn't want to face up to it without a confirmed diagnosis........but it's only 'cos she cares about you!

[Tania B]

Yes, I can see and do appreciate that different people react to illness in others in many different ways. I know my poor sister has enough of her own problems. If I'm honest with myself I'd been listening to her describe her many difficulties at home, for about an hour while we sat in a quaint teashop. I told her my news on our walk back to the car although I had hoped to say something in pleasant surroundings. We are quite different people too.

 

I think my husband is trying to be supportive but doesn't want me to worry myself more especially as I have no firm diagnosis. My friend, like me, wants to know more and understand. My father, I don't think, knows what MS is so for now knowing I've tests coming up is enough. I start back to work next week. I work part-time at term time. I'm wondering about what to say at work. I suppose I have nothing to report at the moment so I should wait.

 

Once again, thank you so much for replying and helping me think things through in a more considered and less emotional way.

 

Love

Tania

[Michelle]

Hi Tania,

 

In the early days before my diagnosis, my lifeline was this forum. Indeed I still view the forum and it's members, as extended family. It's often easier to talk to strangers in a non-judgemental environment,than to talk to family members, who are emotionally involved.

My mother has hardly visited me since my diagnosis etc.Recently, when I was told that I was carrying the MRSA bug,she rang every day Drove me potty,especially when I wasn't ill with the bug. So, go figure! She obvioulsy felt that MRSA was something she could deal with...

 

You just feel free to ask away here. I know it's very tempting to share your findings with loved ones. My tip would be to try and gauge by their reactions; how much they want you to share with them. Afterall you know them best.

 

Regards

 

Michelle

[Dianni]

Hi Tania

I agree with Michelle

 

I find it's often more difficult to talk to my family than it is the people here. In fact, I bet you all know more about how I feel and how the MS is affecting me than my family do. This is partly my 'fault' because I don't want to worry them and try to hide a lot of it. I answer questions if they are asked, but it's very rare I offer information about how I'm feeling.

 

In all honesty I don't know where I'd be wiwthout the support from everyone here. It's so helpful knowing that there's someone who can relate to what's going on.

 

Thanks everyone

 

Hugs

Di

xxx

[Christina]

Hi Tania

 

I agree with Michelle and Di - it is easier to involve people outside your family and even more so if they can relate to the symptoms first hand. My hubby and I are having some sessions with an MS psychologist at the moment and it's much much easier to say how I'm feeling in that situation channelled through the psychologist than if I were at home saying it to him direct.

 

Chris x

[-Kaz-]

I agree with the above, it's much easier to talk to people who are not emotionally involved than to tell all to family, who understandably only worry like .

I tend not to tell them the whole truth most of the time and because i don't live near to them i hide a lot of what goes on with my ms from them. This may seem weird to some people but i only do it to stop them from worrying so much!

Perhaps it's best not to say too much at work until you know for sure what you are dealing with, the same goes for family who you think may have a hard time getting to grips with it.

It's good that your friend is offering you a lot of support and is willing to talk things through with you, she sounds like a really good mate your husband is probably trying not to worry too much until he knows for definite.

 

Good luck back at work next week, take it easy.

[Tania B]

I'm so glad I found this forum.

 

My latest news is that I've just received a copy of the letter that the neurologist sent to my GP. That may be a surprise to her, since the letter starts by thanking her for asking him to see me. It was a balance specialist who referred me to the neuro, not her. That makes me wonder if a copy of the letter has been sent to the balance chappie. HMMM!

 

Now I know what the blood tests were. From a bit of research they're looking for signs of inflammation, anaemia, immune proteins etc. The neuro says in the letter he has also requested a repeat MRI scan with gadolinium (a dye, isn't it?). I have a vague recollection he said about another MRI in passing only.

 

Apparently my visual symptoms are consistent with internuclear ophthalmoplegia, which is usually associated with mid-line inflammatory change. As for my reflexes on examination, "my finger nose is minimally impaired" and "tandem gait is impaired".

 

The bottom line seems to be that he "suspects I have had a longstanding low grade demyelinating process". He suspects MS. Let's see what the further tests say!

 

Thanks for letting me get another load off my muddled mind.

 

Love

Tania

[gillshutt]

Glad things are moving for you and hope the MRI will show something for you to get a def dx of something . Had to look up the internuclear ophthalmowhatsits... I have that, shame I'll never remember what it's called

[Tania B]

Glad things are moving for you and hope the MRI will show something for you to get a def dx of something . Had to look up the internuclear ophthalmowhatsits... I have that, shame I'll never remember what it's called

 

INO is easier to remember. I've corrected my bad spelling on my previous post and I have little idea on how to pronounce it. It's my problems with my vision that seem to bothering me a lot at the moment.

 

Well the good news is that I received a phone call from the MS nurse, who is aware that I haven't a certain diagnosis yet. She is coming to see me at my house tomorrow at about 5 pm. So the neuro was true to his word and did contact her.

 

So I'll keep watching, in the best way I can, for the post and my test appointment letters. You never know I may hear about them soon too!

 

All best wishes

 

Tania

[gillshutt]

More letters to add after my name then :( I knew I had the double vision thing but nobody gave it a name... typical docs.

[linds]

I agree with the girls. This forum helps to keep me going. My fam are really good but as you say they can't be in our heads.

 

Eveyone here is appreciated by me. We share the good, bad and ugly times.

 

LindsxxxBless you

[Dianni]

I'm really pleased the MS nurse made contact! I'm looking forward to your next post telling us all how you get on when she visits you!

 

I'm so glad things are moving on.

 

Hugs

Di

xxxx