I was kicked out of Limboland, DX with MS

[johnniebear]

Its taken many years and rollorcoaster rides,  since 2009.   to get this DX

It took a new MSlogist to call it MS and he  didn't hold back on the first MSlogist for trying to blame the spinal cord lesion that was to close to the herninated disk for the first MSlogist to call it , it has been repaired with ACDF.

He ordered his own MRI'S,  and said even on the old MRI the  spinal cord lesion was clear,  the three brain lesion,  one that enhanced..  all are   in the  correct location and shape and size ..  BOOM..  
He took time and showed me and my wife all the MRI'S  pointed out  each lesion...


I will admit when the Dr say you have MS,,   after all these years I broke down  and cried...

I will be starting Copaxone  and my insurance has approved it .


So  I'm in the club and got my ticket punched ..


take care.
JB

[Lulu54]

You know I'm thrilled for you and your family - having answers is so much better than not knowing for sure.

[anon07072023]

That's good that you haven't ran into any problems, so far. My partner actually does all my injections for me. They just seems so awkward & hard to do on my own. I refuse to do my legs because the injections hurt extremely bad in my legs - probably because I don't have any meat on my bones from my cancer - weighing in at a hefty 82 lbs. It's good that your wife can help you. :-)

[bbassel]

I feel the same way karenm technically I had bacck pain for four year but when my speech went and I went to docc it was two months to diagnosis.

Abbsollutely horrible for people in limbo

Barb

[Artanis12]

Umm...welcome to the club...?  I think...  Although, clearly you've been a member here for quite a long time already.  

;-)

Sometimes I feel like one of those people who rudely jumps the line when everyone else has been waiting patiently.  When I hear how most people go years with no diagnosis, and I got diagnosed in 2 months, I'm constantly amazed AND appalled.  It was a dreadful two months of limbo, but nothing compared to what others, like you, have had to endure.  Since 2009? To be in limbo for that long??  Wow.  My hat's off to you, sir.  And even if the news is less than lovely, I'm glad your long wait is over and now you can get on with dealing, and living your life,  instead of wondering all the time.

Karen

[johnniebear]

So far no problems with the three times a week Copaxone..

the Itracker is good for me.

the only problem is using the auto  inject in the back of the arms,  because of shoulder surgery and horrible Arthritis  in the other shoulder,  my wife will help me on those day I need to inject there


thanks
JB

[anon07072023]

John, I know that we've been talking offline and I'm not on here much, but just saw this post. You had told me already in our emails... But, I just wanted to officially welcome you to the MS community even though you've been a member for years. LOL :-)
I'm glad they have your Copaxone all set up and going and approved. My medhelp doesn't work and doesn't send me any notifications anymore & I forget to log on here to check for updates.
Take Care,
Kelly

[rendean]

Finally!!! JB you have been in limbo forever. Glad someone had the brains to make the right call and get you started on a DMD!! Happy that  you're getting treatment but not happy that you're an officall MSer! :-(

You're one tough guy!

Hugs,
Ren

[karryon55]

Wow!!!

At long blooming last JB!  I can only imagine how you are feeling right now after so long.

I would want to send the old Neuro a copy of the letter from your new Neuro and say oops I don't know how that got sent to you sorry.

Good luck with your injection training. I was told many moons ago to practice on an orange with just a disposable diabetic needle to just get the feel of things.

Take care,

Karry.

[johnniebear]

Thursday at 1PM   my MS nurse  from SS  will be at my  home for the injection training for Copaxone.  


I received all the information and auto inject and a 30 day supply of 40mg..

Years where wasted with one neuro in the Chicago area.

thanks everyone for your support over the years..


take care
JB

[Corriel]

I feel an overwhelming urge to say congrats on finally getting a dx but will instead congratulate you on your perserverance.

Now that you can get a DMD I hope you can get the monster to play nice.

Corrie

[SarahL2491]

WELCOME to the club none of us want to belong to but glad you finally have stopped  being jerked around and have an answer.
I went from 1981 to 2011 to get   a diagnosis so understand your frustrations (been there, done that, bought the t-shirt)

glad to have you in our corner
Sarah

[torikat32]

About time I cried too after it was official even though I was in limbo for 8yrs . Glad your starting a dmd and hope it works well for you

[HVAC]

Thank God they finally diagnosed you.

Alex

[4happygnomes]

I'm so sorry!  6 years, and that is with MRI evidence?!  Shouldn't that be grounds for negligence or malpractice or something??!!  Where is the justice in that?  Sorry, I'm a little angry for you...but so thankful you are on the path to help stop the progression and sounds like you are in good hands with the new Neuro.  Prayers for better days going forward!

Karen

[doublevision1]

No congratulations, just commiseration. After all these years, I'm glad you'll finally be on a DMD.

[Joiedecour]

Wow...that was quite the trip from 2009. I have read your posts before. Happy to know you can start tackling this now you can say  it's MS. Stay strong.

[Poppy7402]

I'm so pleased for you JB.  Although the MS dx stinks, limboland is one heck of a place that no one should have to dwell in for too long.  

Best wishes


Poppy

[supermum_ms]

OMG JB!

Couldn't you just shake your old neuro for leaving you hanging.......you've always been quacking like an MS duck to many of us, official club membership or not, seriously your dx was way way over due!  

HUGS............JJ

[davincidanes]

God bless you.  I'm sorry you're "there" but glad you have a path for treatment now.  It's all that any of us could want.  Hugs to you.

~Linda

[jensequitur]

Finally!

Sorry you've been jacked around for so many years. It's been a long time coming. I hope it's not too late for Copaxone to do you any good!