New to the forum and in Limbo

Hi
have just joined the forum, mainly to satify myself that all that could be done, has been done but I doubt it
I have had all the classic symptoms for almost 15 years but  no neurologist has actually said I have M.S., my early MRI scans showed lesions on my cerebellum but my last 2 scans in the past 8 months showed that these lesions have resolved themselves. Meanwhile my symptoms continue to slowly worsen
In all that time I have not been on any treatment as the Neuro said that my illness appears to be a primary progressive type., I am still working but only just
From the start I have been told that I do not fit the M.S. mold (if it exists)
I was 42 when I was diagnosed (too old)
I was the wrong sex (2 thirds of sufferers are women)
and the lesions were on my brain stem (rare)
Sorry to bore you all,but it is nice to talk to people with an understanding of this

Fondest regards to you all
John

[slightlybroken]

Hi and Welcome!

Your post will get a lot of response..believe me. First off, we have some HEALTH PAGES (yellow icon in the upper right side of the page) you might be interested in reading. It's loaded with info on MS and the DX process.

Let me suggest that you need a second opinion. Your neuro...(how should I put this) doesn't know nothing when it comes to MS. He probably would know it, if the lesions spelled it out for him on your brain.

1. 42 years of age is not too old. There has been people that have been DX all the way up to 65 years of age. MS can hit you at 42.

2. Yes, MS does strike more women than men, that is indeed true, with a lot of autoimmune diseases, but men do get MS. Look at Montel Williams. He's a man, and has MS.

3. Brain stem lesion are common in MS. Very common.

With this said, I would say run..do not walk, do not pass go, run away from this neuro and find a more compantent neuro, maybe a MS specialist that could help you.

All joking aside, I'm glad you've found us and hope you decide to stay awhile. You'll find lots of people here..some that are DX with MS..some that are DX with other autoimmune diseases...some that are unDX (limbolanders). I'm a limbolander. If your looking for support, you've come to the right place.

Take Care
and Welcome

[ozjohn]

many thanks

your comments are much appreciated

[cainer]

  BUMP!
    WHAT SHE SAID I SECOND IT!!!   slightlybroken sorry caps on---  they jerked me around for a few years  - well u  know your body - and when somethings wrongg- so hang in there find someone to listen!   wish u the best!!  tick

[wadeheather]

Welcome!

I'm a limbolander, myself but absolutely love hanging out here for support with my crazy sx. It's really nice to know that there are people out there that are as frustrated as I am.

Heather

[Lulu54]

John,
Welcome again - I'm sure glad you reposted this.  SB is right - I would second her advice to run the other direction from any neuro who says these things.

I want to assume that this is a general neurologist and not one who specializes in MS.  You really need to see an MS neuro, and get some answers.

Lesions on the brain stem are one of the least favorite to have and are not all that unusual.

42 is still in the age range - and in fact there isn't really an age range anymore to speak of, because very young children to senior citizens are being dx'd.  And if you subtract the 15 years or so that you have had problems, that age of 27 puts you right in his ideal target zone.  I was dx'd last year at age 54.  Quix and Ess were also dx'd older...

How can he say you are primary progressive when he hasn't said you have MS?  You really need to pin down the dx - even if there isn't treatment for PPMS, there are at least programs and assistance that you might qualify for that would help your quality of life.

2/3 of ms patients are women - so what does that make the other 1/3 ?  yep, men get MS too.  

As for the disappearing lesions, you might want to read out health page at

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Lesions---Can-they-Disappear-A-Hypothetical-Case-Overview/show/566?cid=36

yes, lesions come and lesions go .... this health page will help you to understand why.

Your neuro needs to go back to school and learn some of the things that have been learned in the past 20 or so years about MS... he sounds very out of touch.

take care and stick around - we are great company and very good listeners.

be well,
Lulu

[cassrox]

From a fellow limbolander, welcome aboard.

Lulu is right - this is a great bunch of folks!

Cassrox

[ozjohn]

Thank you all
it is a great feeling to the the support and sympathy  I  am receiving from you all
I am taking your advise and seeing another neuro on Friday
will let you all know the outcome
just to let you know I was 42 and still playing aussie rules football when I was diagnosed I am 57 now

thanks again to you all

John

[ozjohn]

Getting nervous about seeing the new Neuro on Friday
Do not want him to leave me in Limbo
I need to know whether it is or it isn't and if it is not then what is it and is it treatable
Sorry friends for the rant but after this length of time and getting progressively worse
I want to know if any of the drug therapies are suitable.

Also would like to know from you all if any of the natural therapies work.

many thankss again for all your support

John

[ShadowsSister]

All I can say IS YOU NEED A NEW DOCTOR.. !!!! ASAP..
Putting you on my Prayer List right now.. Please stay with our group, we can offer you support, and all that goes with that... Plus, surprise, Surprise, SURPRISE !!! we have several Men who are a part of our Group... Hello

Hugs on the winds from me to you...{{{{{{{~!~}}}}}}}} DJ

[Lulu54]

John,
You might want to check out the health page about preparing for the neuro appointment - you have one big shot here and you want to be as ready as possible.

Aussie rules football?  Is that Rugby???  Those are real men playing without any pads or helmets, right?   LOL

the health page I mentioned is at ..

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Doctor-Visit-PREP---Be-Prepared/show/156?cid=36

Tell us what else we can do to help you get ready for Friday.

Lulu

[ozjohn]

Thank you both
and to DJ  lots of hugs back

John

[Wobbly]

Hi there... welcome to the forum... I agree with all above...and wanted to let you know that I was told the same thing about not being typical lesions etc...etc... it took me four years and four Neuros to get to a DX...it was always .. could be??  

well, I would get a second, third if nec opinion... I'm in my 50s... my symptoms started in my 40s...

I'm Dx with PPMS.. hang in there and let us know have things go
take care
wobbly
dx

[ozjohn]

Hi Wobbly
I like you user-id as I can relate
I am at work at the moment and feel tired already ( it is only 9am here) I started at 7am and my shift does not finish until 7:15pm

take care and many thanks

John

[ShadowsSister]

John, PLEASE stop saying you are SORRY.. I understand, I also use to say it all the time.. I felt like I was bothering every one with MY STUFF... until I realize that most of the time, MY STUFF was helping some one else in one way or the other..

Please never be sorry for letting us know you are in need of some support, that this CRAZY Dr.. is so WRONG in too many way to count them all... Shame on him for being so ill informed about MS.. His head is in the Dark Ages..  This kind of stuff makes my blood boil.. I am Serious

Give the New Doc a chance, but if he doesn't give you answers that at least make some sense, then you will have to find a third Doctor, until   you find one who at least knows some thing about MS...

This is so unbelievable,,,

Best of luck Friday, my Prayers have been said for you today and they will continue Daily.. You will get the correct answers you need.. At least you are not alone, we are all here for you OK
Sending you Strong but gentle hugs on the winds {{{{{~!~}}}}} from me to you....DJ

[Heather3418]

You've read it here...from some of the best members who really can identify with what you are going through.

I wanted to welcome you to the MS Forum.  This is a place of great support and understanding.  There is alot of wisdom among these fine folks.  We aren't doctor's but hopefully our experiences, both good and bad, will be of some help to you, as you go through this diagnosis process.

Welcome aboard, John.  We are glad that you're here....

All the Best,
Heather