MS dx.

[cjacks]

Hi everyone,

On Monday I called neuro's office to get in to see him , a test had come back and I wanted a conference. Turns out he's taking a vacation after the holiday and his schedule was packed . I told the nurse I was having a couple new sx.s and didn't want to wait three-four wks .   She called back and said doc agreed the the MS specialist( probably MS and gave my a 3.5 on some disability scale) and was ordering Copaxone .    No one said the words , but that was my dx.  

I'm not upset.  I have been for about a month, right now I'm kind of numb.  Buzzing   Buzzing   Hummmmming

I'm going to pick up the Rx. soon .  My friends the nurses are going to supervise the first injection. :)

I hope I don't have the tight chest reaction.    Talk to you later.

Jo

[wonko]

I'm glad to hear that you are ok with getting the news over the phone and indirectly like that.  It doesn't sound like the highest quality of care, but I suppose if you were prepared for the news, then it's better to learn now than to wait for the doc's vacay.

I'm sure the ppl here will offer all kinds of support as you start your Rx.  

Take care, and I hope the holiday weekend gives you some time to process, and maybe even some fun?

[essdipity]

I think your doctor has a horrible way of giving out news. Sort of 'Oh by the way,' while you're at home wondering and waiting. What a jerk. That reminds me of a man I met in a medical office who told me he'd just gotten an email from his doctor that his cancer had come back. Is there any way you can switch doctors ASAP? You have a 'de facto' diagnosis, which can be clarifed later, but you disability scale rating says a lot.

Meanwhile, however, and most important, you now have a DMD, so you can get started on the treatment road. With luck that Copaxone will really do its thing and minimize the progression of your MS.

Jo, you've seemed in the doldrums for a long time now. It's time to start a new phase of your life, and you can do that. Start Copaxone immediately, of course, and don't worry about possible anxiety feelings, as that's quite a rare side effect. Treat yourself to some new clothes, or whatever cheers you up, and work on getting some attitude. Also work on getting an MS neuro who has empathy. If I recall correctly, you're an artist, so why not start some new projects that reflect the new and positive you, whose MS is not going to get her down.

If you have trouble getting going, a mild anti-depressant might help give you that push. There's lots of life still to enjoy, so get rid of the negatives, number one on the list being that disgusting neuro. Remember, we're all here for you!

hugs,
ess

[spastic]

  Hey Sweetie, I am glad that you have answers, but so sorry how they were given to you.  How are you feeling about this really?  I am very concerned about the indirect way they handled this.  

  I am very happy to hear that you have people to help you with the injection process.  I have become a woosy when needles are involved but then it seems I am the dr's pin cushion :)

  Well Sweetie, if you need to talk I am here for you.  Please keep me posted.

Love Ya,

Ada

[cjacks]

Wonko   -      I guess there should have been a better way of giving me the news. He and I had talked about it a couple of months ago and he told me to be thinking of which med. I wanted , if the dx. came .

Others here have gotten the news of their dx. from a nurses call , so I'm in good company.    It didn't bother me to much . I just wanted some one to step up .

After seeing the ms specialist I was prepared !

Ess    I have been in the same place wishingforachange is in , she posted this a.m.
   Quix has commented on it too.   Its difficult to tell if it is depression or fatigue.  someone had I good description the extremities, my arms and legs feel like jello and lead at the same time .Have a hard time with all chores.. I do walk every day, but after that NO energy for anything ...  

I'm rather shaky, legs from knees down are numbish and cramp.   The area of numbness around my eyes has grown to include most of my face, its uncomfortable and annoying.

I have nystagmus , dizziness , balance issues and gait is off. Then there's the cognitive stuff, oy vey...  I feel like my personality has changed in the last year

You had some very good suggestions . Thanks so much .  I've been telling myself after the dx. I will redirect my energies .

What's do you mean " your disability scale reading says a lot " ?   I thought it meant I have disabilities but on the mild side ( it sure doesn't feel mild)

Your so right on many fronts ... Thanks for the great input.  

PS  I will be looking for another neuro , closer to home ..

Thank you both for the  support    :)

Jo

[pennst8r]

I'm so sorry you found out the way you did. But I am glad that you now have a face to the monster you've been fighting.

I'm in Boston for the holiday. Will write more when I get back.

Thinking of you. Take care

Penn

[floridamom2]

Hey there!

What great medical care we get around here, Geesh!!  I wish that you did not find out the way that you did but am also glad they did not make you wait to see the doctor to start DMD's.  You DEFINITELY need a new doctor, you deserve better than that.

In the meantime I am so glad you have your nurse friends to help you through this adjustment.  I would imagine you are a bit numb right now mentally and will need them (and us) to lean on.  Please feel free to lean on me anytime, you have been such a great friend and while I wish that it was not MS, I am glad you have a plan of treatment!

Love and Hugs!!
Kristin

PS.  I have decided to see Dr. Cascione in Tampa and have an appt. on the 24th.  Have read wonderful reviews on him along with at least 2 other people on this forum and another one I visit see him and love him.  Are you close to Tampa?  

[essdipity]

Are you getting any treatment for your symptoms? If not, it's time to start, and getting the diagnosis is important for credibility about symptoms, which you now have. With all that going on, no wonder you are feeling down. That's a lot to bear.

Just as a little first start, go buy yourself a bouquet of flowers. I'm recuperating from surgery, and I did that. We deserve nice things!

Hugs,
ess

[cjacks]

Ada -   Thanks for your concern, but really I'm fine with the way I found out .  In the dr. office would have been awkward. This way I was in the comfort of my own home and I didn't have to 'chat' about it.    And I didn't have to WAIT !  

The injection went well, no reaction , a little swelling on my leg.  Its o.k. to be a 'woos' , sometimes we have just had enough and can't take one more poke . :)  Thanks again

Penn -   I'm so jealous . I'll be thinking of you , have a terrific time.

Kristen -  We do have less then wonderful health care in Fl.  At least on the west coast. This is my third neuro in eight months. I would like to get some one in town .  I think you're right about me being numb. I don't have any emotions right now ( I'm in survivor mode )   I sure may need a shoulder or two later on .
  
I'm over an hour away from Tampa .  Driving north on 75 would be dangerous for me and everyone else on the road , to bad because I would have tried the guy .  Good luck to you with the hunk , watch the drooling.  :)  :)   And WOW , you got in soon .  How fortunate ! !

Prayers and hugs to all

Jo

[cjacks]

Ess -  Flowers , I bought  PIZZA !   and a COKE !  

Yup , I do have a bit going on and no , no one has offered me anything for sx. relief .   I brought up neurontin and provigil with my pcp and he doesn't like them , says they are too strong .  ;(     I can't take anti-depressants .     I'm trying 5-HTP , 50mg

You are absolutely right , I should buy some flowers , I have a beautiful pitcher and ewer that they would look great in . That would make this place cheerful.

How is your recovery going ?  I had parathyroid surg. in May .  What did you have , Sorry memory stuff..      Ahhhh the golden years  :)  

Take care of yourself

Jo

[essdipity]

I think your PCP is stuck in a rut. Ask him if he'd let his wife or daughter have Neurontin or Provigil if they had your symptoms. Your neuro will certainly prescribe them. Maybe you need to speak up more. The squeaky wheel gets the oil, and all that.

You will definitely feel better if you get meds for your symptoms, so do whatever it takes to make that happen. You'd think you were asking your PCP for heroin or something. And even he must aknowledge that meds come in strengths, for heaven's sake.

Glad you're thinking of getting some flowers. The pitcher and ewer sound lovely as a setting for them.  I bought some Siberian Iris, which are gorgeous but hardly last, and also a bunch of alstromeria. If you're not familiar with these, they look sort of like small lilies. They're strictly florist flowers--nobody seems to grow them in their gardens--but they last almost 2 weeks. Can't beat that.

I had surgery on my left foot, and now have even more metal in my metatarsals. I'm doing fine.

More hugs,
ess