EL - How'd you appt go?

[sllowe]

EL - How did you make out with your appt.?

[EL18]

Just wanted to say thank you for all your comments and support, it is really appreciated.

I was a little consfused about the whole 'symptoms' thing aswell but again the advice I have been given here has proved to be so useful, I know I couldn't have been so calm yesterday or coped with this without all your support.

Thank from the bottom of my heart.

[Siddy1]

You did a really good job of explaining what went on in that Neuro visit. Just shows how much you paid attention and that asked questions and  listened to what she had to say.  Good job!  Quite often we are so bogged down with stress and worry  that we can't remember the details after the visit. Now you have a record of this from your post and can print it out  for later reference instead of trying to commit it to memory.  

I do disagree with her about the spasms, headaches and twitches though. I  have had all three from time to time. They come and go.

I found this on one website:

"Here is a list of symptoms that have been reported by MS'ers around the world.  This list is in no particular order and I am not implying that any particular patient will or might ever experience any individual symptom.  These are general possibilities of MS symptoms that might at any time or might never afflict any individual MS'er:

Heat Sensitivity - Hot weather seems to drain the strength of MS'ers
Fatigue - The most universal MS symptom is deep, bone weary fatigue
Weakness in legs - Many MS patients complain of weakness in their legs
Trouble Walking - Stumbling and tripping on smooth surfaces for no reason
Numb Legs - General loss of feeling in the legs
Tingling Legs - A tingling sensation in the leg muscles
Balance Disturbance - A generalized feeling that you're walking a tight rope
Walk With Assistance - Cannot ambulate without braces, canes, walker, etc
Use Wheelchair - Unable to ambulate at all
Weakness in one arm/leg - use of one side of your body curtailed
Arms/hands "Go to sleep" - Wake up with an extremity "asleep"
Hypersensitive skin - It feels like bugs are crawling on your skin
Over Active Reflexes - Spasticity of legs or arms
Pain in or behind eye - Painful enough to blur vision and bring tears
Blurred Vision - Sudden inability to focus
Double Vision - Two identical images side by side
Change in color perception - melding of colors
Rapid eye movement - eyeballs "jitter bugging" loss of focus
Vertigo - Swimmy headed feeling of unreality
Facial Pain - Tic De La Rue or TMJ
Facial Numbness - Numb feeling unable to control expressions
Slurring Speech - Unable to form some word sounds, like a drunk
Spastic dysphagia - gagging, choking when lying flat on your back
Urinary Infections - Chronic infections of the urinary track
Urinary Incontinence - Unable to control bladder function
Bowel Incontinence - Unable to control bowel function
Mood Swings - From elation to depression
Female loss of sexual function - Loss of feeling except pain
Male Erectile Dysfunction - Inability to perform sexually
"Dead" feeling in extremities - Not exactly numb, just as if not there
Night Sweats - Waking up to clamy, damp, sheets
Digestive problems - Feeling too full, bloated after eating
Loss of hearing - Slow loss of audio range perception
Loss of Vision - A blurry, fuzzy visual field unable to focus
Constipation - An inability to move your bowels without assistance
Cognitive Dysfunction - A loss of short term memory and reasoning
Abdominal Banding pain - Unexplained pain in bands around your body

This list is not saying you get all of these or even half of these and even if you do it does not necesarily mean you have MS.

Good luck Em with your future visits.

Marcie

[Quixotic1]

As I have said many, many times headaches are not specific to MS, but people with MS experience a higher incidence of headache, expecially migraine, than does the general population.

I have twitches.  Spasms and cramps are quite related, so her experience with MS must be limited.  Thank goodness she is not your MS Consultant..

Quix

[sllowe]

Good, I'm glad to hear that. My protein was in limits too, but there was banding. I'm doing okay.  I have a follow up w/the Neuro on the 29th, and the 2nd opinion write up should be in by then (he told me on a verbal during the visit that he agreed w/my Neuro here). At this point, I must still in denial, I guess, however I do know that I'm still off and would like to feel normal. Other than that, just taking it day by day, sometimes minute by minute when I get anxious and jerky.  I'm so glad your on your way, and that those Drs are communicating w/one another - wow, you've already got a letter today - that's amazing!

[Want to feel well!!!]

You are definately movning the right direction!!  Thank goodness!!  

[EL18]

Hi, yes she said she was going to do it immediately and she was also going to write to my doctor.  I got a letter from my doctor this morning, explaining she had spoken to her to I think and hope she has kept her word.

I'm still waiting for the bands results from the LP but the other results from the LP were in normal ranges, the protein was a the top end though apparently.

How are you doing though...any further forward?

[sllowe]

I'm so glad you've found someone to listen to you, although, like you said, no further w/resolutions, or a Dx, but none the less a good step forward in the process.  When she said that she was going to try to bring the referral forward, did you get the impression that she would pursue this immediately? I would hope she would do so right away. As you said, it's difficult to move foreward w/a daily routine, when the body and mind are not cooperating despite your will. I forget, did you get the results of the LP?
sl

[EL18]

Thank you so much for the messages..you are all so lovely.

Actually it went really well.  That probably sounds funny as I didn't really learn anything more,,,.except some Neurologist really do have hearts. My husband came in with me and I gave her my timeline.  We talked for over an hour about things..which in an NHS Hospital in the UK is unheard of, you are lucky if you get 10 minutes normally.

She answered all my questions and I felt she truely understood how this feels, she wasn't patronising either.  We went through the timeline and discussed what's been happening.  She discussed some of the symptoms which did confuse me a little but I'll explain about that in a minute.  For the first time I really felt a neurologist had listened to me and taken the time to really get to know me. She was really nice and said she could clearly see how upsetting the whole situation was...I wasn't even crying, infact I felt really calm!!  We discussed how all this has really effected me.  I explained how I was such an energic sports mad healthy women until really Feb, working full time doing a job I love and that we were hoping to try for a baby soon and how everything like that had been taken away from me at the moment.

We went on to discuss my referral to an MS Specialist.  She said that I do have some 'classic' symptoms of MS; numbness, fatigue, bladder problems and tinglying sensations.  However, she also said that muscles spasms, headaches, muscles cramps, twiches weren't signs of MS....that slightly confused me.  She didn't mention the tinnitus, concerntration problems, heat intolerence or electric shocks.

She went on to say that neurologists are the worst people in the world for explaining things to their patients and she apologised on behalf of her and her colleagues. She explained how angry it makes her that we are just 'left' in limbo land and that no care is given to patients during this period, she even said she has been doing research into this and would love to set up a service for me and the many others in my situation who are awaiting diagnosis.

On the subject of MS she explained what the professor meant about ''waiting to see what happens' and the reasons why. My husband asked the question, but do you think she has ms. Her response was she is truely unsure at the moment and that's why she is referring me to a specialist to hopefully rule it out.  We carried on to talk about the fact that this might just all go away and never come back and that I might not ever know what caused it, we also discussed that this could back and again I might not ever know what it was and she discussed that this could be early signs of MS and that I may well go on to develop MS.  They apparently want to re-do the tests again in the coming months, to see what has changed.

She carried on to say how hard something like this can be for someone like me and that often the people who have had good health, careers etc often fall the hardest, I did go on to say, this would be hard for anyone.  I said to her all I want to do is get on with my life but at the moment with the physical problems I'm finding it pretty hard to accept that my body just can't keep up.  She then asked if I would find it useful to talk to a phsycologist who may be able to assist me in dealing with the day to day physical problems, what has happened, what is happening and what might happen.  I said 'yes' I would take any support right now as long as it's not because you think I'm crazy, she reasurred me by saying she didn't think that and that it would have been Physciatric referral if she did. Well you have to show willing.

And really that is pretty much it.....no new news, a little confused about the symptoms but so glad someone REALLY gave me the time to talk and actually listened.  Call me an old softy or may be it was one of those  'eurphoric' moments but I have actually sent her flowers with a card that read...'We just wanted to thank you for the taking the time to talk things through with us.  It really meant alot and helped us to understand the situation better'.  Probably very stupid I know but that is truely the first time I've been given the opportunity to ask questions and talk it through and it was above and beyond what I had expected to happen.

So, I'm no further forward but too be honest I didn't expect to get any answers yesterday.  However, she is going to try and bring the referral forward if she can with the MS Specialist.

That's it really, quite long with very little news but I do feel almost 'mellow' now about the whole thing...even though the symptoms continue. Yeah, that symptoms bit did confuse me. I told my sister yesterday that my mind is willing, if not a little foggy but the body can't be a***d!!.

Hope everyone is ok anf thanks again for asking, you have all kept me going through this.  Thank you.

Em

[Want to feel well!!!]

I kept checking for a post from you also to see how your appointment went!!!!  Please let us know.

Wanna