Diagnosed!!!!

Hi, Everyone.

Well, last time I posted, I said I had been referred to an MS Specialist. She said I may be one of the small percentage that has MS without lesions.

She wanted to be absolutely sure she was right, and ran a few other tests.

I saw her today, and all the other test results came back negative, so, it is MS. So, she has to go through BCBS "Coverage Review" and then, she is going to start me on CopPlease

PLease bear with me, as I don't post often, I am just so darned fatigued.

Weight is still down to 73#scommented I commneted to my DH, "do you realize that this is November?" And he said, "Yes, why?" I reminded him that the worst of my symptoms started theThanksgivingThanskgiving 6 years ago, and I was in bed by Christmas, and remained there and on the couch for 2 yeaThanksgivingis Thanksgving, I am thankful for my new MS Specialist, and my diagnosis.

Sheila

[rendean]

Finally,a diagnosis! You don't know me well, I'm a newbie compared to you  who have been on the boards since the beginning. Either way I'm happy you are finally diagnosed after all these years.

I can't say I've heard of many cases like yours but if it means you can receive treatment!!

Congratulations! The main core is down and out with medical issues and hopefully tomorrow, more responses will be added.

HUGS!
Ren

[Lulu54]

This was one heck of a climb up that mountain, wasn't it?  It's finally time that you got the answers you have known all along.  Geez - it should have never taken so long.

Welcome to the club, officially.

hugs,
Lulu

[yorkieville]

Hi, Ren!

Wow. I just read my post and I hate my spell checker-it changes my words. I think I'll just leave my own mistakes, they're not as bad. LOL

Glad you could make sense of my post.

No, I don't think there are many stories like mine. Most Neurologists follow the McDonald Criteria. And that is sad, because if they would look at the patients symptoms, so many people wouldn't progress so quickly, because they could have been on treatment.

Thank you, Ren.

I've been so sick for 6 years, and I am so thankful for my new MS Specialist.

My 2nd cousin,Erv, died of MS, and there was no treatment available for him when he was diagnosed. I think of him so often, and wish he could have received treatment. I lost him in 2008, and then Iost his Mom,my Great Aunt Vickie to Alzheimer's this past September.

Are you diagnosed?

Hugs,
       Sheila

[yorkieville]

Hi, LuLu!

Yes, it sure has been one heck of a climb up the mountain, and I had quit, until Rich urged me to see another Spine Specialist in June, who ran an MRI and called the MS Specialist.

No, it shouldn't have taken so long, but I'm glad I finally have the diagnosis.
And I will start Copaxone soon.

Thank you for welcoming me to the club.

Hugs,
        Sheila

[rendean]

Sheila,

Talk about bad spelling... I re-read post and it was worse than yours,lol!
Yes, I am diagnosed, RRMS  in 4/09. Symptoms or years prior but it took the scenic route to get there. You must have paid extra for the deluxe package, lol.

I am so sorry for all the losses in your family  all clustered together. Perhaps , this solid information will somehow fill those empty  holes that these love ones worried about you and and now peace is had by all.

MS is certainy a bumpy and rocky road. I should know as my last few weeks have been very stressful but yet, it goes with the package.

So, some days I take it  a day at a time, some days an hour at an time and the worst days are a minute at a time.

Again, so glad to hear of your dx as well as getting to meet you.

Ren

Take care,
REn

[Sumanadevii]

Sheila, I am both thrilled for you and sad.  You struggled as I did for so long with no help...I called it "fighting the demon" in the dark years.  Finally you have a dx and have a name for the demon yet now a time of fear knowing her name and what she can do.

I was only here for the last part of your struggle but remember the few times we did speak.  I always closed with my heart sending strength to you ...and still today I send that same stength.

Sumana

[jumpinjiminy]

So glad to hear you've found someone that can expand their mind beyond the McDonald roadblocks to dx. Congrats on starting treatment. I hope you get relief after so many years of struggling through it on your own.

[Buffy1970]

BCBS has nursing staff to help those with MS.  Ask for their help asap; don't wait.  (I had BC but I can't remember which.  Hope they can give you additional help.)

Much luck.

[maxthecat9196]

I feel the same way Sumana does.  I am relieved for you, because now you can begin treatment; but I am sad for you too.  I thought I would be happy to have a name for the problems I've been having, but instead I found myself angry about for quite a while.  I hope your road to acceptance is less bumpy.

Best Wishes,
Tammy

[Sparkysarah]

Hi Sheila

We have not met before but I wanted to also say welcome to the club, although it sounds like you are no stranger and have been lurking for a long time. It must have been so frustrating for you trying to get answers for 6 years but you are finally there. It feels strange to be congratulating you on a dx of MS which is not one that any of us want, but it is better to know and be able to treat it.

I am also sorry for you to hear of your bereavements..it all sounds like you have been through a very tough time and stress does none of us any good.
I hope that you get on Ok with Copaxone and let us know how you are doing.

Best wishes

Sarah x

[yorkieville]

Hi, Ren.

I need to learn to check after using spell check. I was lucky you could make sense of my post.

I think though, in this forum, people are very understanding of typo's.

RRMS is no walk in the park.

Oh, did I pay extra for the deluxe package! I've seen so many doctors, been through more tests than I can count.

Thank you, it's been rough, losing so many family members so close together. But now, at least my two favorite 2nd cousins can stop worrying about me so much, since I'll finally get treatment.

Sheila

Every day for me is a struggle. If I stand or walk very long, I'm in pain...and down the next day.

So, I've had to learn to pace myself.

Thank you, Ren, and I'm glad to meet you, too.

[yorkieville]

Hi, Sumana.

Yes, we've both struggled for so very long, without help. Please don't feel sad. I'm relieved.

I feared the not knowing, more than the knowing. I do not fear her...I know what she can do to me, and most likely will do to me, because I see what she has already done, but, I also know, that when I cannot carry myself, God will carry me. He has carried me for 6 long years.

The one thing I do worry over-I do not ever want to treat my husband with anger, because I am in pain. He's taken such good care of me.

Sumana, I believe when you sent strength to me from your heart-it came to me. So, I send strenght to you from my heart.

Sheila

[yorkieville]

Hi, jiminy.

I feel so fortunate that I was referred to an MS Specialist that thinks outside the box.

I got a call from Shared Solutions today, that my review should be finished within 24 hours, and then I should hear from a pharmacy, within another 48 hours, and then, Shared Solutions will send out a Home Care Nurse to teach me how to use the Auto Inject.

Thanks, Jiminy, I'm hoping the Copaxone will give me back a little of my life.

Sheila

[yorkieville]

Hi, Buffy.

Do you know if BCBS will give me more help, than instrcut me how to use the Auto Inject?

Thanks,
          Sheila

[yorkieville]

Hi, Tammy.

Please don't feel bad-I've been in so much pain for so long, that maybe the Copaxone will give me just a little relief.

I'm not angry-just relieved. I watched my 2nd cousin Erv, suffer with MS for 18 years before he died. There was no treatment available when he was diagnosed. He died in March of 2008, at the age of 66.

This summer got really bad for me-the muscles in my legs and thighs got too tight and I couldn't walk, without pain, staggering, falling. And they would throb so badly, that even the massager didn't relax them and relieve the pain.

I've known for a long time it was MS-I was angry because my former Neurologist retracted his diagnosis, when for 3 years, I could have been receiving treatment.

None of us walk through this life, unscathed.

But acceptance of the way it changes our lives is truly very frustrating. I hate that my husband has to do all of the housework, the cooking, maintaining our property, etc.  When we 1st moved here, we were a team.

Sincerely,
                Sheila

[yorkieville]

Hi, Sarah.

I used to post a lot, but as I got sicker, it was impossible for me to type.

So, a few of my old friends here have kept in touch via e-mail, because I can start an e-mail, save it as a draft, and go back to it when I am less tired.

I am happy to receive Congratulations on my dx. It's been a long, rough 6 years.

Thank you for your kind condolences. I've lost people that I loved so much, and that truly loved me.  I found out from my cousin Ronnie last night, that we may be losing my Great Uncle Gus. Ever since his sister, my Great Aunt Vickie passed away in September, he has given up on his own health problems and he is in the hospital, refusing to fight.

He doesn't understand, we still need him.

But, my husband is going to take me up to see him, and I'm going to tell him how much I need him.

Ronnie keeps trying to talk to him, but Uncle Gus just replies that he wants to die.

I will post when I am able-and I am hoping the Copaxone will help me to be more involved.

Sincerely,
              Sheila

[Deb61]

I am happy to hear that you now have medicine to fight off what you already suspected you had.  I'm a Copaxone user (for the next few months then I have to switch).  I like the medicine because of it having no side effects.  It also did well for several years keeping the MS at bay.  

Maybe now since your doctor knows that the problem is MS, you'll get medicines that will help with your symptoms as well.  I hope you don't have a repeat of your former Thanksgiving!  

I know for me that stress, fatigue, and lack of sleep during this time period really doesn't help me.  Plus, this time of year brings on more colds and flu for me, and when I'm under the weather or running a fever, I have to really watch out for a relapse.  I have been getting the flu shot for the last couple of years, and I do think it's helped.  

Well, I'm getting side-tracked.  You probably know all about this stuff anyway.  Best of wishes with the Copaxone, BCBS approving everything, and with the Shared Solution nurse.  

We'll be here when you need us to answer any questions about injections.  I hope this goes well for you.  I have a lot of padding which really helps.  You're so tiny that you may ask the nurse about tips to ensure that you inject in the fat and not in the blood stream or muscle.  Not to worry you because I'm sure it will be just fine.  I inject when I take my evening medicine, and I never think about it.  It's just like taking my other medicines, and I spend so little time with it and don't think about it before or afterwards.

My best, Sweetie.

Deb

[yorkieville]

Hi, Deb.

Thank you, I am so anxious to get started on the med. I'm glad to hear that Copaxone has no side effects.

Thanks, I stopped cooking Thanksgivng dinner after 2005. Now, we just pop a couple Marie Calender Turkey & Dressing dinners in the oven.

I am the same way, stress, fatigue, and lack of sleep make me feel so much worse. I am a Eucharisitc Minister in the Catholic church, and when I offer the Blood of Christ to people, I am required to finish the Cup, afterwards, and I noticed that I was getting a a cold all of the time. I had to stop attending mass the beginning of June, and they want me back, but I don't think I will return as an E.M.

I injected Forteo for two years, so I think I 'll be ok with the Copaxone.

Thanks, I'm so glad I'll be able to post in the forum again. It had become impossible for me.

Sincerely,
             Sheila

[Guitar_grrrl]

Wow, wow, wow!  What a journey!  I'm so glad you finally have answers (even though you knew the answer), and can finally start a DMD.

Big Hugs from the Left Coast!
Lisa

[yorkieville]

Hi, Lisa.

Thank you so much!

I hope, anyone that hasn't been diagosed, will read my story, and never give up. Never let any doctor convince them that they are wrong.

We know our bodies, and we know our family medical history. My 2nd cousins knew, I had MS, for years, and they were so frustrated, and worried that I would end up like our cousin, Erv. Esp. my cousin Erv's wife...she saw the same things with me, that Erv started out with all those years ago.

If my story helps anyone, then my long journey will have been worth it to me.

Sending you big hugs right back from the Midwest!!!!

Sheila

[sllowe]

big hugs to you from the east coast Sheila - you kept fighting despite all you've been through. I pray your journey gets easier from here on out!
xoxoxo
shell

[yorkieville]

Hi, shell!
Sending you (((HUGS))) from the Midwest. I had to keep fighting. For everyone. Because maybe, through my long jurney to diagnosis, others won't give up.

And maybe....just maybe, other Neurologists will learn that lesions are not always visible.

Thank you, shell. I'm just waiting for BCBS to approve the Copaxone.

xoxoxo
Sheila

[doni54]

Hooray!!!!  Yippee!!!!  Finally a neuro with some brains!!!!!  I am beyond happy for you sweetheart!!!  Now maybe you can get some relief and with the treatments maybe it will slow things down for you.

I am just so very happy right now.  I hardly ever get on here anymore but was skimming through when I saw this post!!

As always, you are in my thoughts and prayers, and again, I am sooooo happy that you have finally got that dx!!!

Love & hugs,
doni

[yorkieville]

Thank you, doni!

I can't tell you how happy I feel! No words, can express the relief, of finally having my diagnosis re-instated.

I don't get on here much either, I have carpal tunnel in my left wrist, so I try not to type too much.

But I had to come back and tell all my friends my good news!

You, my friend, are always in my thoughts & prayers, too.

xoxoxo
Sheila

[ku111]

I am pretty new here in the big scheme of things and I am the mom of a 12 yr old boy that is still in "limboland" but only for about 1 yr now.  It seems like an eternity.  I can't imagine 6 years.  You are a very strong person for not giving up!  I am so sorry yet so happy for you.  It's much easier to fight something and get help when you know for sure what you are fighting.  I agree that symptoms should play a much bigger part in this especially if they remain and worsen over time.  Much more help could be received quicker.  I am glad the "ghost" is reality for you.  I wish you the very best!  Goodluck with the medication.  Please update us to let us know.

[yorkieville]

I'm so sorry that you are still living in limbloland. I pray you won't live there very long. Esp. since you have a 12 year old son.

6 years did feel like an eternity, esp the 1st 2, when the pain in my spine was so unbearable, I couldn't do anything but lay on the couch.

Thank you-I couldn't give up-my husband wouldn't let me. :) He kept reassuring me that the doctors would figure it out. He'd rub my back, for hours.

I am hoping my 6 years in Limboland will inspire people never to quit searching for a doctor that will help them.

I was doing fairly well, on a cocktail of pain meds, but this year, my symptoms began worsening, the spasticity in my legs got so bad, my legs would throb with pain.....my back began hurting so bad again, I couldn't stand for very long.....my husband encouraged me to see a new Spine Specialist, who examined me, listened carefully, and called an MS Specialist.

Our insurance approved the Copaxone, and it is being delivered on Tuesday, and my Home Health Care Nurse is coming out after Thanksgiving to show me how to use the Auto-ject.

I will definitely be back to update everyone on how well the Copaxone works for me.

Sheila

[summerluvr]

I'm glad you have answers and can now start treatment to fight this disease!  I don't have MS I have a rarer cancer called Multiple Myeloma, and it took years to finally get my cancer diagnosed while my whole body was dealing with so many symptoms!  I am doing well now in Remission and I feel so different than where I was two years ago at this time, (right before my diagnosis)

[Rena705]

I can't believe you FINALLY have your diagnosis!!!  I am sorry that you have MS but I am glad you will finally get some help for your suffering!  I am happy/sad for your Sheila but mostly happy that you can finally get on with your life and not have this horrible disease with no name.  

Lots of Hugs,
Rena

[yorkieville]

Hi, summer.

Thank you. I will start Copaxone right after Thanksgiving.

I understand what you went through with the symptoms, waiting to get diagnosed-a very dear friend of mine had prostate cancer that had spread to his bones, and he was suffering, and the doctors weren't listening.By the time he was diagnosed, it was no use-there was nothing to be done.

We were friends for 29 years, when he died.

So, I am very glad to hear that your are in Remission and pray you will remain there.

Sheila

[yorkieville]

Hi, Rena.

Thank you! It's a relief to finally be diagnosed. I actually cried with tears of gratitude wihen my MS Specialist told me. All I could do was keep thanking her for not giving up on me.

I am happy to finally have my diagnosis. I know many of the things that MS has done to me, won't be reveresed, but if I can just have some of my quality of life back, I'm ok.

(((HUGS)))
Sheila