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335728 tn?1331414412

Well No More Guessing...

I have been officially diagnosed of MS over the telephone this morning...I am not feeling very well right now and to top it off apparently I can't get back in to see my Neurologist until Jan. 29, 2008.

  I asked about having some steroid therapy for my Paratrigeminal Neuralgia and the vertical double blindness that started again last night and I was told to see my primary about it.

I do have an appointment with an new MS doctor on the 17th of December.  When I asked what about the MS drugs and am I going to be put on one the nurse stated that there are certain qualifying factors that I had to go through before being put on any of these drugs.

I said that I know that and I have qualified all along through my medical plan.  She said that I would have to let the new MS doctor deal with it.  

I am sooooo upset right now I wish I had the strength to put my fist through a wall!  I do have an appointment with my primary this afternoon (the one the Neuro asked me to make so that she could maybe help me get my emotions under control!).

I am going to ask her to call my Neuro dr. and find out about the steroid therapy.  My primary has not been helpful at all through this and she keeps saying that you are under the care of a specialist now, go see him.  

If she is not going to help me today I will have a few very choice words for her I can tell ya!  I am fed up with being bounced around like a ball!  I am tired of being treated as though I have done something wrong when I have done exactly what they have told me and all it did is put me through 9 months of HE**!!!!!
10 Responses
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222135 tn?1236488221
I am very sorry to hear that you have been diagnosed and especially HOW you were told (weenie roast!), but I am happy for you that you now have an answer. Hopefully some peace - you're out of Limboland. You may want to call that doc - or a different on - and demand you be seen NOW. It's awful to drop a bombshell like that on you, then say you have to wait 2 months for treatment! You could file a complaint with your insurance company.

Prayin' for ya

Penn
Helpful - 0
Avatar universal
I'm very sorry to hear about your diagnosis and that your neuro was such a coward.What a jerk to put his nurse through that ordeal and then to delay treatment.I agree your neuro is a wacko and shouldn't be practicing.
Getting on the disease modifying meds at the earliest on set is benificial.Steroid therapy started during a relapse can lesson the symptoms and prevent them from being permanant.

You rant all you want,this gonna be a new adjustment for you,even though you new the possibility of MS,to hear those words is devasting,but life goes on.This disease is liveable and your gonna have some bad days,but they will pass.

I hope you get some help through your GP.

T
Helpful - 0
164435 tn?1377102256
HELLO TO YOU,
I AM SORRY FOR YOUR DX TODAY I WAS DX LASTED
WEEK MY SELF IT TOOK ME 4 YRS. I KNOW HOW YOU FEEL RIGHT NOW.
I AM STILL TRYING TO EXCEPT THIS, I AM NOT TAKING ANYTHING FOR
MY MS, I WAS ON COPAXONE FRO 3 MONTHS AND I HAD A REACTION.
SO I DECIDED NO MORE SHOTS. MY MD TAKES CARE OF ME FOR MY SYTHOMS
LIKE MY PAIN AND MY DEPRESSION. HE JUST STARTED ME ON MARINOL.
HE TOLD ME IT HELPS PEOPLE WITH MS. GO OUT AND BUY A BOOK
MS FOR DUMMIES, REALLY IT IS A GET HELP I GOT ONE.
HEY WE ARE ALL HERE. GOD BLESS   KITT
Helpful - 0
335728 tn?1331414412
Thanks so much for your advice JT...I agree with what you had to say and I am sooo fed up with all the **** I have been through for the last nine months I am going to become much more pro-active.  

It is a hard thing to do when you have no energy though and I think that it is disgusting that people should have to waste the little energy that they have on fighting with the health care system when they could be using it to get well!

I also think that I will be getting a lot more vocal in my province as to the pitiful health care that is available!  The government uses the excuse of a "large influx of out of province people moving into our province is a strain on our health care" and in the same breath they talk about the millions they are spending on a new "art gallery" that only 3% of the population are going to use!

OK you guys...you said I could spout on this site and here it is...oops, I better start getting ready for a "doctors appointment"...Yeah I guess I will go and will let you know what happens when I get back!

Rena
Helpful - 0
335728 tn?1331414412
I agree that he should be on the bad doctor list and on the Rate your MD site he has had some not very flattering comments.  I am going to wait until I calm down a bit and then look into what can be done about this bugger!  I agree that I don't want to see anyone else have this happen to them.  It is really funny because everyone I talk to that knows him says the same thing "Oh he is a great MS doctor, doesn't have much personality and should probably be in a lab instead of working with people but he is a great doctor!"  Maybe they should really have a closer look at what kind of doctor he really had become, he may have been great in his time but maybe his time is up???

So sorry to hear that you went through the same thing...I am appalled that it has happened twice and I sure think it is a cowardly way for a doctor to behave!

Thanks for your support and I think I will need it in the next few weeks...

My legs are hurtin so bad today, my head is killing me and my eye is drooping like mad...

Gee, maybe I should go to a doctor...hmmm...maybe not????

Big decision as I see it!

Rena
Helpful - 0
195469 tn?1388322888
This is straight from 'Ripley's Believe It or Not'....but I swear this is the truth, so help me God.

I, too, was notified by a nurse that I had MS.  When she called, she said, "Hi Heather, this is Dr. Burch's office.  I've told Dr. Burch, I don't like being the one that has to make these kinds of phone calls, especially when it's bad news; but Dr. Burch believes you have MS."

I was APPAULD that a NURSE would call me with such life altering news.  A NURSE!  There is one good thing that eventually came out of this.  This first Neuro of mine is now on the "bad doctor" list, due to so many complaints.

I forgot where on the Internet it is, but you can actually "rate" a doctor or file a complaint.  Maybe you need to file a complaint with the AMA about your doctor if you really feel that he isn't well enough in the head, to be treating patients.  This is a very serious matter.  When you are feeling a bit better, but still angry enough, look into filing a complaint.  If this doctor is that bad, he really shouldn't be practicing medicine.  It could actually mean the difference between life and death for one of his patients.

Hang in there, Rena.

Heather
Helpful - 0
335728 tn?1331414412
Thanks for your support and you are right!  I am sooo mad and upset and just had a banshee cry that I am sure the neighbors must have heard!  

You know what really makes me the most angry is that he had his NURSE call me on the PHONE and give me the news!  What a bloody COWARD!!

You know what also makes me really angry is that he had his nurse tell me to have the OTHER DOCTOR deal with the MS drugs!

If he thinks that I am not going to go to the appointment with him in January, HE IS MORE DUMB THAN I THOUGHT!!!  I am going to take him to the wall with the B.S. that he has put me through in the past 9 months and find out if he really thinks he knows what he is doing!  Personally I think the man has dementia and no one has the guts to tell him!  I am serious about it too!  I have worked with so many dementia patients in the extended care centre I used to work at I know what it looks like and as far as I am concerned he should not be practising medicine anymore!
Helpful - 0
Avatar universal
Welcome to the world of backward health care. As someone who works in health care and has MS, here is my advice.
Please don't let you these doctors take advantage of you. They might have gone to school for 10 years, but they don't have MS and have no idea what it's like. In the coming months, you will have to make serious decisions about what drugs to take, what tests need to be done, and then, of course, the never ending battle of new symptoms. You need a team, with you as the team leader. I seriously had to go to 4 different neurologists before I could find one that I could work with. You hire them, you pay them, they work for you. Would your boss like it if you jacked her around they way you are getting jacked? Probably not, my guess, you would lose your job. It's time to fire those morons and find people who are interested in your health and well-being. Like it or not, you're in charge now, take hold of the reigns and good luck
Helpful - 0
195469 tn?1388322888
Oh Sweetie,

My heart just aches for you.  We have discussed this before...you suspected all along it was MS.

If you are like me, I had a sense of relief on one hand and an utter flood of tears, at the same time.  I was angry, I was in grief, I was in shock, denial...almost everything you go through when you experience a death.

You will experience all kinds of emotions in the weeks and months to come, but you know honey...you will have US to lean on.  This is what this forum is for.  Support, compassion and understanding.  And dear heart, you WILL get it.

If you need to vent some more, you go right ahead.  We are here to listen.  

This is tough news.  Even if it's what you felt all along.  You have to go through all the emotions.  It's part of the process.  The good news Rena, this disease is not a death sentence.  Sure, it's a real pain in the kester, but with the help of so many friends, you will get through it.  After you run the full gambit of emotions, then you have a "take charge" attitude and will adopt the "I will fight this with everything that I have," emotion.  With that fight, you will have support.

You will be in my prayers.  I hope you know that.  All of us are in pain with you, Rena.  But we are here...lean on us..

I send you big ((((((HUGS)))) and many thoughts and prayers.

Heather
Helpful - 0
Avatar universal
You have every right to be furious, upset, and just plain tired of it all. Short of actually putting your fist through a wall, vent and rant like crazy, here especially. It's fine to express all you feel to those who do understand, and will understand over and over.

When it's the right time, you'll start adjusting to your new status and doing what you'll need to do then, but maybe that time isn't now. So keep posting and we'll keep on responding.

ess
Helpful - 0
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