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Letter from Neurologist


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21 replies to this topic

#1
Michelle

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Morning All,

This morning i recieved a copy of a letter that my neurologist has forwarded to all my consultants and g.p.
It states that my dx is Inflammatory CNS disease,right hemi-sensory loss and poor balance related to sensory disturbance in right leg and is arranging for me to be admitted for three days IV Methylprednisolone treatment along with the lumbar pucture.
My brain scan showed multi focal white matter lesions consistant with cns disease.
Now! I wish they would spell it out in laymans terms for ding bats like me to unnderstand.
When i had my appointment with the neuro he said i could put down possible ms on any medical,dwp forms etc.  Help guys, am i right in saying i can confidently say that going on all the above that i have ms?
I have made an appointment with the g.p, :pullhair:  but it's for friday eve. A long time to be waiting (well for me).

Love to you all :hehehe:

Michelle

#2
frances22

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HI MICHELLE
        I am sorry you have to go into hospital, but at least there getting on with thing and you should be dx soon.
I am still waiting to see the nero, hate this LIMBOLAND.

Take Care

hollies 22

#3
Michelle

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Hi Hollies,

Dont be sorry! I am looking forward to a short stay in hospital. I can take my college work in with me ( making sure they put drip in left hand) or i will be down in the dumps, and it gives me a chance to have a rest. I am a terror for over doing things. I am also taking in my mp3 player just incase anyone snores ( good idea on angela's behalf) and some yogurts to fill my chops with, if i get hunger pangs from steriods ( good idea on Gaynors behalf)
I think my other half will be happy too, as he can watch unlimited football and play on his X box while i'm away :hehehe:
Apart from the horrible place called limboland how are you?

Michelle :pullhair:

#4
Hils

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Hi Michelle,

Thats a bummer, but hopefully the steriods will help ease the symptoms for you.

It sounds to me as if your neuro is hedging his bets until he has the results from the lumbar puncture. They at least should take you out of limboland and you will finally know where you stand.

Sometimes an enforced rest does us the power of good, so make the most of it!! :bed: Mmmmm.... I might just come along too.......

Hils :wavebunny:

#5
Michelle

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:bed:  Hils if you come along I will book us into a swank hotel in Cardiff or better still the Celtic Manor Resort in Newport, and between my steroid treatment we could sneak off and sample :wavebunny:  the high life....
But dont tell everyone or i will be bankrupt :oops:

Michelle

#6
ddgorgeous

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Michelle,

I had an LP 4 years ago. Before going into hospital the Neuro said it was important to avoid heavy meals for a day before and after having the LP performed, to try and drink plenty of water and to make sure I lay as flat as possible on the bed for several hours after the LP was performed. No moving around, or sitting up in any way, as severe headaches were not unheard of.

I did what he advised and had absolutely no headache or any side effect in anyway. I slept for 12 hours after it was all done and it might have been the best thing I could have done.

PLEASE do something similar and hopefully it will all go well.

Take care and best wishes,

Ron :wavebunny:


#7
norma

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Hiya Mish,  Well you sure are having a long haul at the moment arent you :wavebunny:   I hope that your stay in hospital proves beneficial for you and you come out feeling so much better.  I'm sure you will, and I hope you get all the answers once your LP is over.  Be thinking of you.  Best wishes Norma :oops:  :bed:

#8
Gaynor

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God Michelle, how the hell did I miss your post yesterday???

Bloomin heck....I am so sorry about that.
Well you'll need a good strong hand to squeeze when they do your LP and I am the biggest baby - but honestly it wasn't too bad....just stay as still as poss and concentrate on the squeeze. Tell the person to wear some 'wild bird protection gloves' or something - lol !!!

My IV treatment sounds exactly the same, ask them what your starting dose is ... mine was 1000mg's (a biggie) and then they'll bring it down as you go on.....ending up with daily tablets that reduce all the time in dose. This is VERY important to do this and it'll take about 2-3 wks I reckon.

My LP was done in the evening so I just got into bed and slept. I hope you will feel the benefits of the steroids pretty quickly as I did but it will be a slow gradual affair that improves and you will feel more relaxed if that's the case (lets hope so).

The yogs bit made me laugh I have to say and you'll have to let me know if you get the munchies in the middle of the night aswell - or if it's me just being a fat c*w !!!   :wavebunny:  

Anyway let us know how you get on on Fri. When do you go into hosp?

Gaynor xx

#9
Michelle

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Thanks Everyone,
I will take your advice Ron, and yes norma it's a bit of long haul. At least with yesterdays letter from the neuro i have a definate dx of cns disease and it also explains how my right side is affected. This at least gives the powers to be, like the dwp some solid proof that i am not swinging it :bed:
As hils commented my neuro is hedging his bets. I can't blame him I would probably do the same if i were in his shoes. The final stamp of MS or not, will soon be over... Maybe in time they will find a way of all agreeing how to dx someone and make it a quicker process.
Blod if your reading this, my neuro MR Huw Morris practices at the Heath. I am not sure if he see's private patients, but if your looking for another neuro then maybe he could help.
Thanks for all the threads... Hope you all have a better day than the day before..

Lots of Love

Michelle :wavebunny:

#10
Michelle

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Gaynor,

I am waiting for them to send me my admission date..   :bed: At the munchies... I am off to Weight Watches tomorrow night. I have put on a stone and a half since I finished work.. Seeing me go from a size 12 to busting a size 14 :lol:
I blame it on the inactivity  :wave2: But to be honest i regulary have a munchy attack :rofl2: Thing is I have to think of Andrew as he gets out of breath if i have bad days and end, up being pushed around in the chariot :oops:

Take Care

Michelle :wavebunny:

#11
Gaynor

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carrots and ryvita then now for your munchies if you're off to WW's !!!

Good luck .......I'm off for a cuppa and a choc digestive or 3    :wavebunny:
  
Gaynor x

#12
blod

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hi michelle.
thanks for the information about the neuro, i may well need it in a few weeks :wavebunny:

i hope your treatment goes ok and the steroids make a difference for you and i hope you get some straight answers soon.

#13
frances22

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HI MICHELLE
             Still in limboland waiting to see the nero seems to take ages.
Hope you get on ok ion hospital.

take care


Hollies22  xxx :cheerleader:  :rofl2:  :rose:

#14
Michelle

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Yes,Hollies waiting is the worse part esp if your not sure whats wrong with you.
When do you get to see the neurologist? Sorry for asking again but i am so forgetful at mo.
Mind you I haven't forgot I have washing and ironing to do.. It kind of hits you in the face when you walk into the laundry room :rofl2:
I blame it on the other half, as he gets through loads of shirts working in an office..
Keep us up to date with whats happening. We all know what it's like waiting to find out whats wrong with our bodies..

Love Michelle :cheerleader:

#15
beddoe79

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mish62, on Jan 30 2006, 04:16 PM, said:

:rofl2:  Hils if you come along I will book us into a s***profane word*** hotel in Cardiff or better still the Celtic Manor Resort in Newport, and between my steroid treatment we could sneak off and sample :cheerleader:  the high life....
But dont tell everyone or i will be bankrupt :rose:

Michelle
Can I come to the Celtic Manor as although it looks like a prison on the hillside it is very posh.  I used to work in the Beefeater just opposite it and know it very well.

Leigh xxx

#16
Michelle

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Oh, go on then Leigh... You can come too :clapping:
I am trying to think where the beefeater is.. Is it on the coldra roundabout?

Michelle :howdy:

#17
Michelle

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Thought I would post this here...
Neuro appointment Wednesday gone was really a big yawn. I did not get to see my consultant. I guess he has more interesting cases to work through. The doctor I saw was very nice ( they have all been very nice) But nice doesn't really help.
One thing i get so fed up of... is the fact that sometime new doctors dont read your notes before you go in. Although, I know this can be the case with any neuro. You then end up having to go over your complete history. No wonder you come out feeling jaded.
At first he tried to put me into a category of people who just feel numbness ????? He then explained to me that there are lots of people walking the streets who have MS and dont know it... I was bewildered by this statement. So, I had to ask him to look at my notes.
Oh! I see that you have had a spinal scan...Oh! and an mri scan Oh! Lumbar puncture. Well!!!! How have you been since your last appointment. Flipping heck!
Well!  I have been flat on my back, unable to walk. I have fallen over a couple of times. I have piddled my pants...OH! and I have had bowel problems... Not to mention etc etc etc..
To this he replied,
'You look well today'
'Yes, I put on lipstick just for you' :lmao:
Ofcourse I didn't say that.
God! What a nightmare.
I then asked him about treatment.  Now i knew this would bring about a good response.
'We can't give you treatment for numbness'
'I didn't ask for treatment for numbness'
'What treatment are you asking for?'
'Treatment that will slow down the progression...I have been told that early treatment of MS slows progression'
'Well there's no scientific proof of that'
' I beg to differ'... I then went on to explain to him about recent developments.
He then replied,
'Yes! But there's no proof to say that early treatment of MS, will be of any benefit in the long term'
So, I told him that the commitee was out on that one.
After giving me a good old pull about. He asked the registra to come in and see me?? Maybe I was too much for him.
Apparently, when the registra examined my eyes at last appointment he was concerned... as there was Major blank areas in my eyes???
Sadly, they had yet to see the eye specialist report. You see! They dont converse very well with each other.
On that note i was told that they might send me for a vep test. As the tests they carry out are very crude. The vep will tell them if i have inflammation again.
I was also told that I could have iv steroid treatment . After my last Iv steroids... I was told by my consultant, that I couldn't have any more treatments :flowers2: God! They change their minds like the weather.
He then smiled at me and said..
'Maybe your going blind just like me'
I told him that old age doesn't come by itself. :cry: Mind you he was only in his forties.
All this time my knee was pressed into his groin :lmao:  A first ever :lmao:
If i was an agressive person. It could have been nasty for him.
OH! he also told me there was only two types of MS?????? Flip, where did they get him from :rofl3:
I was so glad to get out of there. I came away wondering why I bothered going.
My next appointment is in four months. If i have times when my legs get too weak I am to contact my doctor and he can check me. MY doctor must then contact the neuro's to have me admitted. I think i will be admitted to the funny farm...as that's where i was heading if i didn't get out of the neurology clinic.
Why couldn't i have had infected tonsils :lmao:
Sorry for  :rant:
Michelle :rofl3:

#18
horseydawn

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Hi Michelle,
I am sorry to hear about all the hassle you've been going through, at least it seems as if you are getting somewhere.  It appears that they give a dx of possible ms, then probable ms after a different opisode and then definate ms!!!!!!!!I believe the reason is political and to do with reducing the number of candidates for expensive modifying drugs, I was told this by a medical pro, so who knows!!????
The most important thing is that at least you know you aren't going mad and can prove it to others!
Sometimes I think that doctors don't like giving dx in case ipeople react badly, but in my experience of ms, it's the symptoms we don't llke!!!!
Wishing you all the best,

:flowers2:

#19
Michelle

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Dawn,
Sorry to confuse. I have had a dx of MS. It was just this doctor who hadn't read my notes. Basically, as you say it's political.  In S.Wales we don't have money to treat MS. Oh! There is Campath. Thats another story. I have asked about LDN. My MS nurse told me that my neuro will not prescribe it for me.
Apart from that there's just steroids.
I Have  a positive mental attitude at the moment. So that helps!
Have a great weekend
Michelle :flowers2:

#20
horseydawn

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:flowers2:
Hi Michelle,
sorry I'm a bit slow!!! Hopefully will soon get to know you all better!!!!
I'm not taking any modifying drugs either, just Gabapentin, diclofenac and anti nausea tablets.  Nirse says my ms isn't following normal pattern though I have had relapses.  Seems if I can have anither I may be considered for the drugs.  You'd think it was like ordering a takeaway wouldn't you lol!!! So I don't want one but it may be of benefit???????
Just to make you feel better, my laundry pile is like mount etna after explosion and hubbys shirts hide if they see ME with an iron lol, seems I torture them for nothing as he has to do it all over again!!!!!!

Hope your ms behaves itself a bit better for you!
Best wishes with the steroids, hospital stay etc.
Dawn

#21
ddgorgeous

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Two chicken curries and a fried rice please! :rofl3:

Ron :flowers2:


#22
horseydawn

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:flowers2:
Hi Ron!
Might get a bit cold by the time it comes back lol.  Suppose it's about time we broke the news about Teddy escorting Bri to China. I am slightly worried now I've learnt a bit more about him, (Teddy that is lol) that he will be getting the ladies to rub his blisters, and generally be leading my hubby astray!!!
Or should I be more worried that YOU have got my hubby and teddy out of the country ???????
Best wishes!



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