See Nuerolgoist tomorrow Privately

[MrsAristotle]

Well guys I thought what the heck in for a penny in for a pound and made an appointment to see my neurolgoist tommorrow at 6pm to discuss WHERE NOW. After my second errrrrrr opinion LOL.

I am going to ask if I can have the MRI he promised me months ago but this time I am going to PAY to have it done, that way I will receive the full report within 2 days, and I can see what it says, so there will be non of this FOB off saying there is nothing on it.

Well there was last time, and perhaps it might show other things.

IF it is clear of lesions then I have decided to retire from the game as I am getting too ill and tired to be bothered.

Is there anything I should ask him?

I want to tell him that the guy said my symptoms are A TYPICAL OF MS but wouldnt give me a diagnosis of MS, because I said I had symptoms way back in 1982.

I just want answers like all of you.

In the UK we can see the neurologist on the health service free but you only get about 10 minutes if your lucky where by if you pay for it you get 30 minutes.

Wish me luck LOL. I will let you know how I got on.........hopefully..

[Want to feel well!!!]

Holy c**r**a**p Batman!  

Thank you for the morning laugh!!!!!  You made my day!!!

(((HUGS)))
Wanna :o)

[MrsAristotle]

ha ha you made me laugh c**r**a**p thats not too bad a word is it?

No its our MANTRA lol.

We feel like c**r**a**p
We are treated like c**r**a**p
The neurolgoists talk a load of c**r**a**p
Our life is c**r**a**p

Over to you batman.......xxxxx

[Want to feel well!!!]

hmmmm...must have said something bad in last post??  Didn't mean to!  Oh, it was c**r**a**p....that's not too bad, is it?

Wanna :o)

[Want to feel well!!!]

Love the Batman reference!  My husband does that all the time.

I know what you mean about wanting SOMETHING to show up for Pete's sake!  Something is wrong so stop the hide and seek **** and show up!  Come out come out wherever you are!

I've been on steroids since I was diagnosed, and I love them.  I lost weight on them and my doctor said he has never seen a patient lose weight on steroids before.  I am the exception, not the rule.  I have never pushed to get off of them, but I know I need to get my level below 10 mg to save my bones.  They just feel so good to me!

Hope you get that MRI SOON!!!!!!!

Wanna :o)

[MrsAristotle]

HI wanna

I dont expect it will be this side of xmas to be honest.

But yes your right about the steroids good thinking bat man. I hadnt actually thought of it that way, its just for me steroids are heavy stuff and I dont want to end up a guinea pig if they are not necessary either.

A few more months wont harm me that's for sure.

I am waiting for new appointment for MRI now as well. I know its stupid but I hope there is something on them more conclusive this time.

Thanks for your concern Wanna the guys on this group are amazingly supportive.

Thanksxxx

[Want to feel well!!!]

I went back a read through what you had written earlier and I wanted to say that you were wise in not agreeing to take the steroids, because if you had and you have an autoimmune disease, the steroids would change any test results the rheumy will do.  That's the last hing you need!  

My rheumy would not give me an Rx for anything until he ran test for everything under the sun.  It was a long process, but worth it in the end.

How long before you see the rheumatologist?

Wanna :o)

[MrsAristotle]

Hi how are you now? Is your abscess better now?

Well I am waiting to see what happens right now. He has me down for more MRI and blood tests.

You know and I know that I bet it turns out to be autoimmune.

God all I want to do is get well dont we all, but having no diagnosis well you just dont know how to get well if you dont know what ails you LOL.

xxxbig hugs Mariaxx

[analabscess]

Hi Maria, sorry I'm late coming to this. I'm so pleased he's referring you to a rheumatologist. You do get neuro symptoms with rheumy disorders and your family history needs investigating.

xxx

[jibjen]

Hi Maria,

I'm glad you are getting your MRI..I am going to take you with me to MY next appointment! Good for you!
I am not familiar with medications at this stage of my game but I admire you for your decision to make your own choices!

Smooches and hugs!
Jib Jen

[Charley123]

Good that you stood up to him!!  On the subject of steroids...I've read that only IV steroids work well with MS.  I've been on them since July..the oral ones.  They aren't, according to what I've read and been told, going to really help MS.  The short doses of oral steroids do nothing for MS.  And yes, the symptoms come flying back when you end the short dose.  That's what happened to me the first time I took them.  I spoke with a pharmacist recently who told me that oral steroids probably would by themselves not make much of a difference in MS, but in combination with MS drugs, (Copaxone), the combination of the two seems to help many.  I was first on Prednisone but then put on Medrol which I like much better as I doesn't make my brain feel like scrambled eggs.  
It seems neuros really like to see us when we are falling down and miserable.  Perhaps we should all video ourselves during our worst days and take it to the appointments.  
I'm happy that you are going to have a LP soon.  
Is there a list of good neurologists anywhere???  Can't seem to find one in the US. Hugs, Charley.

[supo_uk]

Glad you are having the MRI, long overdue in my opinion.

And, glad you didnt let him push you around. Knowledge is power but neuros do NOT like a well informed patient because they are unable to then bully them and obsfi, um obsfuc...c**p ;)

confuse the real issue, WHAT IS WRONG.

Rest up. You deserve it.
xxx

[wonko]

Maria,

There is a lot in your update to comment on, but I'm compelled to focus on your choice about steroids.  I totally agree with your decision to decline them at this time.

I was in a very similar situation in 2008.  I was first offered steroids in Feb., but declined.  Finally, in August I relented and took them.  My doctor told me that they would assist in diagnosing me.  She told me that some conditions, like fibro, don't respond to steroids while others, like MS would.  So I figured what the heck?  I'll take them.

I had a huge response to them, positive at first.  I actually thought I was cured!  Then, about a week after the taper, all of my symtpoms came crashing back, and in the following months I progressed to more ill than I had been before the steroids.

I had a follow-up with my neuo at the time and told him about this, thinking (as I was TOLD) that it would help diagnostically.  He shrugged and said "well, everyone feels better on steroids.  It doesn't help determine the cause at all."  I again heard this from a rheumy.

So already I was bummed that I was misinformed about my response to steroids being helpful in my dx.  But then, when I finally was dx-ed with Lyme, I found out that steroids are just about the worst thing you can use on an infected person.  They supress the immune system, which is just awful for a person battling Lyme.  So while I felt better in the short-term (likely relief from inflammation), it really hurt me as it allowed my infection to advance.  In fact, it took many months of treatment to get back to where I was pre-steroid.

So I think you are being saavy to not accept the steroids when you still don't know the cause.  It won't help diagnose you, and it could potentially be detrimental.  Plus those steroids put you on an emotional rollercoaster!

OK, I let everyone else dig into the rest of your post, but that part struck a chord with me!

[MrsAristotle]

Well i was in a fighting mood and I paid for it LOL, so did he.

Basically no answers but more tests. He wants me to have a full spinal MRI so I should have an appointment in 5 weeks. Then more blood tests.

He is writing to my GP to insist I see a reumatologist as he believes there could be inflammation somewhere (well DOH my LP showed that).

I told him i was worried as every flare i had left me with a tiny progression that was detrimental to my life. He said he didnt see a PROGRESSION when I came in to see him.

So I went for the jugular LOL. I said to him, how can you say that you dont see me, when you do its been about 6 months I struggle in to see you, perhaps next time I should come in my wheelchair which I was in on Thursday because I couldnt walk far. I said to him, not long ago I was walking my dog twice a day, then once a day, then in my mobility scooter, and now not at all because at the moment every time I go out in the scooter the bumping about makes me legs and back ache.

2 weeks ago I could hardly walk or get out of bed. IF your saw me then you would see I was progressing.

God I was so mad with him.

He said that he sees his MS patients and some can hardly walk so I said well so what I know an MS patient who goes on holiday 3 times a year what are you trying to say.

The mans an idiot.

Anyway at least I can have my MRI I am just hoping to goodness that something shows up more.

He did say that he thought perhaps i should start steroids which would prove if it was an inflammation and I declined I told him for now i dont want to be a guinea pig, and would rather wait until we have results from blood and MRI scans.

So really nothing new in some respects but more tests to look forward to.

Thanks for all the support and kind wishes. The support i get from my buddies on the Internet helps more than you can ever know.

Big hugs..... Mariaxxxx

[NiCeeGlover]

Great idea, get copies. I'm going to do this tomorrow when I see my NS concerning the Cavernous Hemangioma found that bled on the r fr of my brain. Have bad stroke like symps on left. Doc said stroke, then ms, then tumor and now this. But waiting to see if it has bled again. Said he was baffled as to way my symps are so bad. So I've waited propped on my recliner since 10-05-09, for tomorrow. Can walk (shuffle) w help of walker. brain goes crazy w movement, bright light or loud noise. Hoping for some answers tomorrow.

[Want to feel well!!!]

Hi Maria,

Wishing you well at your appointment...hope your words are heard by the doctor and he listens with his heart as well as his mind.  Best of luck to you and please let us know how it goes.

(((HUGS)))
Wanna :o)

[jibjen]

Hi Maria,

I am thinking of you! I am so sorry you are at the this point..I wish I could give you more input..but I am just discovering my illnesses as well as the meaning of my test reults. I live in the U.S.  so things work differently...
I can tell you what I have been learning  in the past few months though ......You really need to insist on getting answers and asking questions which lately I have failed to do..(I am learning things on my own that have not been shared to me by my doctor) My reports were never discussd with me .....I am finding things out the hard way...DO GET COPIES OF EVERYTHING..I learned that from someone here on this forum..

I agree with Lu and stick to your guns...You know your not feeling well and don't let anyone tell you otherwise..


Good Luck My Friend!
Big Hugs and Kisses
Jib Jen

[lu7997]

I will keep you in my prayers that you get the answers you are looking for and deserve to have.


stick to your guns and dont let them tell you there is nothing wrong when you know it is something and if they will not answer then demand they say they dont know instead of they dont see anything.    if a doc has to say he doesnt know he will most likely give you a reason instead.  

good luck and As I said I will keep you in my prayers.

please up date
Angela

[supo_uk]

Maria

I hope tomorrow goes well, sending lots of support.

As far as paying to go private I would not be too concerned about time limits. When you go private you take the time you need, that is what going private is, imo.

Regarding lesions or lack of lesions:

"Apart of the usually known white matter demyelination, the cortex and deep gray matter (GM) nuclei are also affected, together with diffuse injury of the *normal* appearing white matter."

"MS is active even during remision periods. Grey matter (GM) atrophy is independent of the MS lesions and is associated with physical disability, fatigue, and cognitive impairment in MS"

No neurologist can judge a neurological condition on lesions or lack of lesions because of hidden lesion activity.

A classic example is PPMS which may show abnormalities in the cord where none are detectable in the brain. This occurs when normal appearing white/grey matter is actually damaged due to occult lesions.

*Occult: detectable only by microscopic examination or chemical analysis, as a minute blood sample; not accompanied by readily detectable signs or symptoms

Neurologists have told many limbolanders that they are making it up, trying it on  because they have no lesions or few lesions. To the uninformed patient this can be devastating and it is terribly misleading.

This post from the MSS forum shows progress is being made though we are not quite there yet...

The article from the Lancet states that treatment should be undertaken promptly rather than the neurology community waitiing for "more" lesions for when they do this they are putting the patient at risk of irreparable damage.

http://www.mssociety.org.uk/applications/discussion/view.rm?post_id=857554&id=14320

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