SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Advise for Neuro Visit
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This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Advise for Neuro Visit

Hi

I have a neuro appointment for Monday (20th) and wanted some advice/suggestions as to what I should ask, how I should present my feelings symptoms etc.

This will be my second neuro appointment, my first was 2008 when he basically showed me the door and told me to stop looking for reasons for what I was feeling.

I know that people say you should bring a timeline or note down your symptoms, problems etc but for how long and in how much detail should you go?
I don't want to go waltzing in with a detailed print-out of the past 6+ (how long I've been having symptoms) slap it on his/her desk and say 'what do you make of that then?' but nor do I want not to have bought something.
Any ideas/suggestions gratefully received.

My symptoms have gotten worse since I saw the last neuro but I worry that I will just be dismissed again, I'm feeling really nervous and hate the thought that another health professional will ignore my problems.

Because I kinda got used to leaving with fatigue, pain, buzzing feet, weird feelings like water running down my legs, jerking about, slurred speech, swallowing problems (I could go on but I won't bore you) it's hard to say what they mean.
Should I tell them all that?

One of the main reasons that I'm seeking another neuro appointment is that last July my  bladder failed and I was told to go to A&E by my GP (because I'd been having problems over the past couple of years with not being able to empty I didn't really think it was an issue so never mentioned it) since which time I've had an indwelling catheter fitted and it can't be fixed.
The urology nurse said it was because the nerves aren't sending the messages to the muscle to empty.
But when I went to see the urology consultant as a follow-up he didn't seem concerned and couldln't explain why it had happened.
Even my GP was a bit miffed about that so I pushed for a neuro appointment to see if they could shed some light on the whole thing.

Anyone else had a similar problem?

Sorry for the long post but I really coudl use some advise/help and support.

Thanks

K x
Tags: visit, neuro
4 Comments
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1627868_tn?1333889942
Good morning!  I think that it's good that you are able to see the neuro again.  Is it the same one or a different one?

As far as the timeline goes, it probably is a good idea.  I never used one, but it probably would have been better for me if I had.  It's sooo easy to forget everything that you want to bring up; you get caught up in the moment, etc.  As far as my GP told me regarding the timeline: cover everything, whether you think it's important or not.  That's up to the neuro to decide what is/isn't.  DO NOT go into great detail.  List the month and the year that a symptom started; ex.-June 2011-left leg went numb.  Lasted 2 weeks.  Make it out in order, but that's it.

From what she told me when she told me to make it out, they will read it if it is really brief like above but will disregard it if it is lengthy, like in a paragraph, or if you put other suggestive info in it.  For example, if you state your bladder isn't working again because of the nerves not sending out signals, they will quickly disregard it.  That is for them to decide.  (Does any of that make sense?)

It was also suggested to me that I get a calendar and list my symptoms on there.  When I get a new symptom, I should right it on the day of the week that it happened and nothing more.  Then, when it goes away, write it on the calendar again.  (I know, I am rambling, but this is what was suggested to me, so maybe it'll help you from here on out?)   :-)

As far as the appointment goes, I would suggest that you let the neuro decide what is causing your symptoms.  What I mean is, don't go in there and suggest that think you have this or that.  Most times if you do that, they will quickly dismiss you as if you are having psychological problems instead.  Really let them take the lead after you let them know what symptoms you are having.

I could go on and on, but I will let someone else give some suggestions too.
Sending big hugs of support your way!!!!     Sarah
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1168938_tn?1327157832
Hi Jerky Girl
Suz here ;o) Just wanted to say all the best for your neuro appointment, I hope it goes well for you.
Don't be intimidated by the neuro they are only human after all...I hope this one treats you well and gives you some answers.
A timeline is an excellent idea and I agree with Sarah keep it brief.
Big Hugs
Suz
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Avatar_f_tn
Thanks guys

really useful stuff

I've just been making notes as you suggested Sarah just date and brief description of what happened and how long it lasted.

I like the idea of the calendar that's a really good idea.
I do a journal on this site but it can be difficult to see how long something lasted and it's a bit of a chore to have to trawl through all the journals and trackers - exactly what I've been trying to do today - yawn!

I'm seeing another neuro at a different hosptial to the last one (June 2008 - I can't beleive it's 3 years ago - so much has changed since then - sadly for the worse!)
Fingers crossed I get someone who'll listen and won't dismiss me immediately.

Thanks again xx

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Avatar_f_tn
dear cydpink,

how did your appointment go?  i hope you were treated with respect and that the doc took the time to listen to you.

please let us know when you have the energy to do so.

blessings,
binx
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