Help with questions for neuro please !!

[Eyesnlegs]

Hi All,

Thanksso much to Shell for pointing this out but this is my last post with a new title, it must be the academic in me (boring I know) giving a title such as 'any one know of a good book?' lol

so here is the post again and thanks Shell x


I have finally decided to try to educate myself as much as possible and stop taking the ‘ostrich’ approach to this MonSter as Quix calls it. I have spent too many years pretending it is not happening to me and accepting my GP and other medics dx until my self esteem has dropped off the scale.

I have tried to learn bits and pieces from the resources on the health pages here and they are brilliant – but would now like to arm myself with a few books so that when I face the neuro again on 8th April I have more knowledge.

The sort of info I need is to help with the following:

I was dx with ‘relatively mild MS’ in December 2008 although the neuro said that was only if he was forced to make a dx because he couldn’t think of anything else that would cause my sx except ‘hardening of the arteries’ and I was too young for that. This appointment was before I had factored the not walking / leg problem in. He wrote to my GP saying he had found more white spots and more activity and therefore had been forced to reach this conclusion.

I am going back to ask all the questions that I didn’t the first time and need some information to help me ask the right questions as my GP has advised me to write to him first and outline what I would like to discuss at the appointment, well it is costing me £150!!

This is coupled with the fact that we have the DDA in the UK which I cannot invoke at work without a real DX and this would help lots as they would to look at my role in the organisation and distress it and help with other issues. In the UK the DDA is invoked at the point of dx with MS and I have coped for too many years – before I throw the towel in at work I need to get them to help me manage the job.

So folks can you help with:

1. Books you have read and recommend?
2. Questions that I need to ask / areas I should be covering with the neuro?

Any help / experiences welcome.

Thanks all

Pat

[Eyesnlegs]

Thanks so much for adding to this, I go back on 8th April.

No I don't have copies of anything, that's the way in the UK but I am going to ask if I can have copies.

My biggest issue is that apart from an MRI and about 4 mins neuro exam I have had no other tests at all this time around. So after a possible ms 3 years ago there was nothing else done until the MRI last November.

Sorry I missed this I've had a hectic weekend and I haven't felt too good with it didn't check the board until now. Thank you so much for these ideas.

I may not get very long with him, so I am collecting everything all you wonderful people have given me and will then need to prioritise my list to get the most from the appointment.

I guess the message I am getting is the main question is to make sure he does enough tests to give me a definite dx instead of a a 'relatively mild ms - come back if you have any more incidents / relapses'. He gave me the impression that the dx was based on an educated guess but then it seems that that is often the case with ms.

Thanks again
Pat

[sllowe]

Hi there!

Ok.  I like what you've gotten so far, and want to add a little. But need some reminders.

Do you have copies of the reports? The ones that document the "white spots"

Do you have your bulleted symptom list put together? In timeline type fashion?

Do you have copies of your labs?

I understand it might be hard to get your hands on them in the UK, but if you can, that would be one of my questions to the neuro.

"Can I have a copy of my reports?"

You can also ask the Dr. his/her position on treating MS at it's earliest stage? Tell the Dr. that you have learned that early treatment of MS is best.

Ask the Dr. "What other tests are left to run for him/her to dx you?"  What other diseases have been ruled out? What has been tested so far?

Anyone else have things to add to the running list?

Oh, when do you go back?

ttys,
shell

[jed9999]

and I have MS lol

The ISBN is 0-89793-218-8

Jane

[jed9999]

Well, I put the ISBN number for the book I *didn't* help write, I see. Here is the correct information"

"Women Living with Multiple Sclerosis" by Judith Lynn Nichols and Her Online Group of MS Sisters, published in 1999 by Hunter House in Alameda, CA..   Jane

[jed9999]

Oh, pooh--I bet I sent my last communication in an incorrect way. How is it you send to a pm? (I assume permanent address) Also please let me know if he list I want for the other site is already on here somewhere. I think I'm pretty Ok cognitively, but I haven't spent any time reading about this site, and I think it's confusing and hard. They really did mess up my password the other day. See, I complain too. I'm going back to bed--which will help everything--Bill's colonoscopy was fine and now not again for 10 years! Yippee! Hugs, Jane

[Eyesnlegs]

I can't thank you enough for this the list is very comprehensive and will help loads. I am very nervous about the appointment as I am afraid I will just be dismissed again.

As I have said before I am not after treatment just a dx to help with my worh situation. I spent a horrible day at work yesterday. One and half hour commute )should be 1 Hour) in dreadful traffic to be there for 9. Meetings all day (we even had a working lunch) got home about 7 last night.  Much of the day I was struggling with pain, tingling in left foot, dizziness which comes and goes and vision problems which made me feel sick.

I got through it I just crashed when I got home and hurt so much this morning. I am so tired of only just about coping and doing nothing but work because I have no strength for anything else.

2 years ago I was coping with days like this most of the week, but I have struggled more and more recently. Since last September and my knee problems I have done only a handful of full days at work and struggle to cope.  

Unfortunately, this is what the job involves and wihout a dx I fear for being able to do the job long term and will not even get the pension I have worked for. I can't retire with ill health if I have no proof eh?

an email sounds like a great idea. I will send you a pm.

Again thanks so much.
(((hugs))))
Pat

[jed9999]

Hi, folks--I was having some posting problems and lost some posts because my login wasn't working. Anyway I'll try to be brief, but add what I had in mind.

As to questions when you're at your stage, Pat, I'd suggest the following:
How typical are my lesions for MS? (placement and number, density and size)
Is he saying mild because of lesions or symptoms?
What does he suggest to keep symptoms mild? What are side effects of treatment?
When and how he will judge effectiveness? Does he give equal weight to motor and sensory problems?
Generally how often does he suggest MRI's? How does he feel about them?
If he suggests a treatment, who will help you learn about it and does he have any tips?
Does he agree you generally have to wait 5 yrs to get an idea how your course will be?
{What neurologists does he recommend, and what treatments does he look to as promising? Does he feel the promise for MS is in gene study, stem cells or existing treatments?} May be for another time.
What resources does he know of in your area which can support you?

As for books, Pat, I am an old MSER, as you know--diagnosed in 1973--and I always like books by Randy Shapiro. i also think the very many MS sites online generally all lay out the facts in an orderly and relatively easy way. Just do a search for multiple sclerosis and go to town!

I was part of a group on AOL about ten years ago that wrote an informative, but fun book which is easy to read quickly, and enjoyable. It's "Women Living with Multiple Sclerosis" by Judith Lynn Nichols and her Online Group of MS Sisters. The ISBN is 0-89793-293-5; it was published by Hunter House in Alameda, CA in 1999 as I recall. It was the aftemath of a message board, then round-robin exchange of emails. It was an interesting experience into the amalgamation of ideas from a very diverse group (froup.) They went on to a second book, but I dropped out. I'll have to get it out and re-read it, too!

I don't know if you got my offer to email you with additional information, Pat, but it still stands. I have just written a collection of 60 or more ways to tell if you have MS. Many are funny, and all are from my 36 years living with the MONSTER.

Stay calm, trust your friends here, and just do that preparation for your appointment. You obviously have many people behind you and together we can do it! Jane

[Eyesnlegs]

Hi Lulu,

Thanks for answering, I think my biggest issue is if he gives me any more info other than 'white spots' the technical detail just goes over my head currently and I would like to understand a bit more. So I would like to know how to reply to those kind of points.

Also my biggest concern is not knowing a positive dx and the worry that if I ignore it this time and just 'get on with my life' as he has told me to that if it's not MS then something else may be lurking.

Thanks for the book tip, I'll try to get a copy.

Thanks again

(((hug)))
Pat

[Lulu54]

Pat,
The English academic person in me sucked into the other post about books, where I replied that I am finally reading MS FOR DUMMIES.  I would strongly recommend it for yourself and then to share with your support people

With the system you have in the UK with DDA, I would strongly push for that affirmative dx.  But your dx doesn't have to be MS does it to qualify?  

Lu