I have been diagnosed

[addicted2harleys]

After close to seven long years of all the many frustrations of knowing there was something wrong with me, having scary symptoms without having answers, being told it is all in my head, being told I am fine and I should go celebrate with dinner, being told to pull up my boot straps and the latest and greatest neuropsych test I had done in May, 2011, diagnosing me with health anxiety (cute words for hypochondriac)...I was finally diagnosed on June 24, 2011.  

So, I have finally climbed my mountain.  And as I stand up here at the top looking around for all of you dx'ed but can't seem to find any of you here.  Then I see you all waving from the mountain next door.  You see, I am not on the MS mountain, even though I was POSITIVE I had it.  

Limbolanders, please keep an open mind.  I truly, truly believed I had MS.  Check out my time line listed in my journal.  I definitely have the symptoms.  Heck, I was even dx'ed with it in the very beginning.  

I was dx'ed with Familial Spastic Paraplegia.  This is an MS mimic.  There is no cure for this either.  Just symptom management.  I am still learning about it, and had never heard of it.  While I feel a sort of calm because I finally have an answer, I am also still sorta numb right now. 

I kinda put it on the back burner for now due to the here and now going on in my life.  My next message is about rehab and my baclofen pump and what has been going on.  It is really long, of course.  Just warning you.  :)

A ddi

[essdipity]

Hi, Addi. No need to answer each one separately, really. We just want to hear from you, and especially when that means you're doing well. But just let us know how you are.

Bright days ahead!

ess

[addicted2harleys]

Hello, everyone-

While I am a bit overwhelmed at the responses and support I have received over my dx, I am not surprised.  I have always felt this forum was a very special place to be a part of and my feelings have definitely not changed since.  While I started to reply to each and every one of you I only found that the message was way too long, even for me.  And it was taking me far to long to write it up.  So, I just want each one of you to know that every one of your responses were near and dear to my heart and were much appreciated.  

After therapy this morning I will go back and reread each one and answer any questions that were asked because I seem to recall a few.  By the way, I break out of rehab on Monday and I will be walking out of here.  I had a setback yesterday that is still affecting me today, but I am going to take it a bit easier in therapy because I don't want this to stop me from my goal.  

So, thank you all from the bottom of my overfilled heart and I will catch you all after therapy.  Maybe I can keep up with some of you all's posts, as well.  

Love and hugs,
Addi
Dx'ed HSP 06-2011

[rendean]

((Dear Addi)),

I'm glad you finally have a dx but sorry it's FSP. I call see your red hair flowing from the nearby mountain top and know that you are happy to finally have an answer. Julie is right. Arizona and all that followed was meant to be so you could make it to the top of the mountain!! I've read about your rehab and the rest of your posts. I'm glad things are smoothing out for you.
You are NOT allowed to leave the forum...Quix's MOB rules...one a member always a member. You bring a bright glow to our forum and add so much to it with your posts.

With MANY big hugs and wishes for a smooth ride here on out,
Ren

[Willowwoman777]

I am so glad you finally have answers - not knowing is the worst, cause now you can be an active participant in treatment and feel hopeful in knowing you are fighting.

Blessings

[michelleric]

(((Addi))),

So saddened to hear of your DX. I know there is a part of you that is relieved and validated, that indeed you had something wrong with you and that FINALLY someone figured it out.

Been a long time coming...

I wish nothing but the best for you, and hope you have more strength on the days ahead.  I know you indeed are a fighter, so that will be a help!!  

Sending BIG hugs your way,
Michelle

[cheesymum]

Addi, I am both happy and heartbroken for you.  Happy that you finally at least have a name for your disease (I'm going to your link and read about it after I post this) and heartbroken that you have this disease that just sounds so awful from its name alone.

I, of course, wish you all the best and I'm very glad that you are still going to "hang out" here with us.  We Limbolanders have much to learn from someone who just "graduated" from our ranks.  I, for one, would miss you if you left!

Again, happy and sad at the same time....

[Sarahsmom46]

My heart is jumping for joy for you.  Joy that you know now what to call this disease, but more so that you can now move on.  I am going to read the information about the disease with the link you provided.  

If you don't mind, can you share with us how they came to the diagnosis?  I'll read your other post, perhaps its in there.  

This admittance into rehab was fate.  You were meant to move to Arizona, meet new doctors, and come across that wonderful pump nurse who helped get this ball rollilng.  It wa all meant to be and about time.  

Take good care and please keep us updated on how you are doing.  And like Quiz always says, you can't run off and leave us.  You are an important member of our family.  

Love and hugs,

Julie

[cainer]

wow!  glad you finally got answers but i have never heard of it either- sure hope you are going to be ok!!  hugs!!! and so glad you didnt give up!!

[grannyhotwheels]

Addie,

I'm so glad you finally have answers... Not so sure the answer you got was a good thing but at least now you know and can move forward instead of the 2 steps back thing you've been doing for so long...

I'm glad your staying with us because your story is an inspiration to all of those still in the limbo lands... Keep your faith up and your spirits high...

I'll be praying,
Carol

[Sidesteps]

I haven't had much time to get to know you but I just wanted to say that I hope for the best in your new diagnosis.

You and Summerluvr are the reason why I am going to remain steadfast in finding answers. The last couple days I have thought of giving up until I get so bad they can't ignore me. I refuse to assume I have anything specific until there is an valid answer. I feel my life deteriorating. I know I could be at risk. I won't give up for my kids. They have already lost one parent. I do not want to lose anymore of my remaining good health for them.

Thank you for all that you share and do here. This post touched me. You are an inspiration to me. ((((hugs)))

[summerluvr]

Thank you for posting.  I have never heard of your illness.  I hope now with treatment you are able to reach a good plateau (that's what my doctor calls my state stable disease at the moment, as Multiple Myeloma usually does not have a true "remission") and get on with your life.  "new normal" is what they call it after a cancer treatment.  But for me I believed I could get better and pushed myself to be back and doing stuff I haven't been able to for a few years when MM was wreaking havock in my body.

Oh and you are like me, we don't have MS but we post here anyway,:P this support group has truly helped me in so many ways keep living my life in a positive way!   I have different symptoms, fears, and future now then  MS folks, but living with an incurable disease has such impact in how you go about things that being able to read how other people keep doing it really helps me.

[jujuminx]

Addi,
  Wow, your post was quite impressive.  The most touching of all was your concern for other limbo landers (you are now a FORMER member of this group).

  You are truely an inspiration to all of us to be our own best advocate and to keep pushing for answers. And while I am sad that you have something that cannot be cured, I am happy that you finally have some answers that you have fought so hard to get.

  Thank you for sharing your story.  I am with everyone else in saying, YOU BETTER NOT LEAVE US!!  We are family now and no matter what, we are forever connected.

  Blessings to you and I am looking forward to your pictures.

Julie

[sllowe]

Got them on my lap :)
Same here, girl - Feelings are mutual - so cherish the friendship :)

[Sparkysarah]

ctd......phew I thought Ihad just lost my whole post so am very glad that it just shot off before I had finished as I am not sure I could have written this all over again.

So what I was trying to finish with was to say acknowledge what you are feeling, and then just concentrate on now. I am a stong believer in helping ourselves and that finding out as much as you can and being informed is a great positive step that you are obviously already going forward with.  So allow us to tread those footsteps with you as you have made many friends and I am so happy for you that you have at last got some closure.

With love and big hugs

Sarah xxxx

[Sparkysarah]

Hi Addi

I am away on holiday and just thought I wd take a sneaky look at the forum and am so glad that I did to see your news. In fact I nearly fell off the chair, yes the one that binds us all closely together in a shared understanding of the pain of knowing and not knowing what each of us are giong through and what our future faces.

I felt strangely emotional reading your post and it made me think about the forum and the connections that we make.  Most of us have not met in person and yet we have shared some of the most intimate things that perhaps we do not share with those closest to us. We gain a trust and a friendship that is so valuable and unique that it is difficult to describe. However your news just made me think of all these things and that I am soooooo glad that you are going to remain with us on the forum as speaking for myself I would really miss your input and friendship.

So onto your news. I am very glad that at last know what you are dealing with, and that it is not MS. I have not heard of your condition and will now follow the link that you have kindly left us to read about it as I think it is really helpful to be informed about mimics.
So I can see you on the other mountain but at the moment there is a bit of a cloud in the way so can only see your smiling face and waving arms. I need to find out more about what you are dealing with to help me remain a steadfast friend who is able to continue to support you.

I cannot imagine what a relief it must be to know at last what is wrong, to be able to put a name to it and to take your time to come to terms with the diagnosis. I am sure that you will be filled with such a mixture of emotions, there will be anger and sadness muddled in with so many other things so just allow yourself time for all this to sink in and settle.  You are such a strong woman who has been through so much in your life so hold on to your inner courage, remember the challenges that you have overcome and never lose sight of the fact that you own gut instinct was so very accurate. You know your body better than anyone and although you were convinced it was MS and you knew there was something seriously wrong.

I know that you have learnt a lot about yourself along this rocky journey and I hope that you can find it within yourself to fogive all those people  who refused to listen, who insulted you and misdiagnosed you. Acknowledge what y

[Lulu54]

Addi,

Both of your posts caught my eye when I logged on today and I chose to read this one first since it had the catchier title.  Thank you so much for sharing your story here - it is so difficult to convince people sometimes that they know something is wrong, but it very well might not be MS.  You are a prime example of that struggle.

We've always known you to be special, but girl you outdid yourself with having this rare disease - a quick check tells me that you are one of about 10,000 cases in the US.  It is reassuring to know that life expectancy isn't shortened with HSP.

So you hit the summit but you're over there on a different peak?  The climb is still exhausting and now that you have answers I hope you will allow yourself the luxury of wallowing in pity, doubt, anger  and whatever other emotion you've been holding in for so long.  We'll have to learn to yodel to communicate from peak to peak, ok?

Absolutely you cannot leave us now - there is so much that others can learn from you and your experiences.  Please continue to be Addi, sharing openly about the day to day struggles and joys.  Plus I would miss seeing you here.

Now I'm off to read your other post - there must be some story behind all of this.

lots of hugs and more to you,
Lulu

[RedFlame]

Addi!!  Wow, where to begin!

I am so relieved for you that this part of the struggle/journey has been finally answered without hesitation.  It's been such a long, long road for you and that part is over.  It's a terrible thing to be so sick and have doctors throw their arms in the air or worse.  Thank God this NP came along.  

I just read your other post too.  I had been thrilled for you that you were able to get the pump and were continuing in rehab.  Now that you know the people there you can return when need be.  I was sorry to hear about leakage in the catheter and amazed that it happened to you of all people.  You have had your share of mishaps.

Like others here,  it's not a diagnosis to jump and down about, but now you know.  I truly believed you had MS too!  

I have been waiting for an update on you for a while and thought about you during the fires and sandstorms.  I hope you can stay cool there buddy!

And, NO YOU ABSOLUTELY CANNOT LEAVE THIS FORUM!!  I for one would greatly miss you.  You are my friend!!

lots of love
XXXXXOOOOOXXXXX

Red

[addicted2harleys]

Thank you, Alex.  Me, too.  :)

[addicted2harleys]

Kelly, thank you for your post.  It actually feels good that someone else has heard of what I have.  I appreciate your words of comfort and support, they mean a lot.  I don't recall all of your symptoms, but the big spasticity word I do remember you having.  I know you suffer quite a bit with that and spasms.  You do know that there is gene testing to confirm or deny what I have, right?  Let me know if you would like to know what little info I have learned about that.  

I did email the neuropsychologist with my dx.  I have been in contact with her still because I haven't received my 26 page report from here yet.  lol   Only her bulletted 2 page thingy.  My dx goes way, way against her findings.  Funny, I am off all of my antidepressants/anti anxiety meds and am thriving.  She is just one of those DUMB doctors I read about in a post here.  :)   Truth be told, when I got her results, I absolutely lost it.  After a few days I picked myself up, dusted myself off and continued on.  

Aww, Shell, now you gone and done it.  I was doing so well keeping the tears in check.  Got a tissue??

Thank you so very much for your support, friendship, shoulder and guidance you have given me along the way.  It has and still means so much to me.  Regarding my chair here, I forgot to mention that I also superglued and nailed down the legs.  So, you all are stuck with me.  :)

Hugs,
Addi

PS.  Here is a website on my disease:
http://www.sp-foundation.org/hsp.html

[HVAC]

I am glad you have an answer.

[addicted2harleys]

Thanks for the support, everyone.  There is a start of acceptance that I have absorbed in the dx so far.  From what I have learned of it so far, it does seem to be the missing puzzle piece for me.  I think having everything going on with rehab and the pump has kept me from being swallowed up by it, you know?

Alex, with your positive o-bands and lesions hopefully you will have your answers sooner than later.  I never had either.  Good luck to you.  And, YES a bike ride would be wonderful...but I want it long and leisurely with loud pipes rumbling beneath me.  :)

Kat, thank you so much.  You have been with me on my journey since I joined this group and have always been supportive.  For that, I can't thank you enough.  Initially I was given the dx by my NP that manages my pump.  She has been a neuro nurse here in AZ for almost 20 years and has worked with the best of the best, as far as neurologists and neurosurgeons and has seen my disease more than she wishes.  The doctor she works under confirmed it, as did the neurologists and neurosurgeons at St. Joe's, where she sent me to for surgery.  So far, the pump was the best thing for me at this time for symptom management.  Thanks again.  :)

Ess, gf, I have to agree with you.  The disease sounds pretty awful to me, too.  But so does MS.  :/   Yes, it is good to have a name for it...getting that took weight off the shoulders.  As far as the familial...yes it is inherited.  But, many generations can carry it without knowing or showing any signs in their lifetime, from what I understand.  The only one I can find down the line that may be questionable would be my dad's aunt.  She died of motor neuron disease several years ago and her symptoms were very similar to mine.  Also, from what I understand, it is one of those rare types of diseases that many neurologists simply don't know about.  Anyways, that is what I have learned so far.

I also agree, as does my pump nurse, that the pump leakage probably caused the whole thing.  Hindsight, you know?  It wasn't suspected because I only had the pump for 6 weeks.  

Thanks for the words of encouragement.  You, too, have shared the tale end of my journey and have always been there for me.  I truly am grateful.  Yes, I will adjust and overcome this and triumph.  I sure hope with minimal pain.  :)   They sure are trying to help me with that part of this.  I have a tattoo that I got in CA when I finally got my SSDI "big check".  I will have to take a picture of it and share it.  I got it to imprint in me my journey.  Seems that lately it has been talked about and discussed and pointed out each day by many people.  Several people here relate to it as well as I do.  When I get home and have my camera, I will share it.  Careful and heartfelt hugs accepted and given back, my friend.  Thank you.

Tish, I have to agree, the symptoms of MS are hell.  I do share many.  I am so sorry you have suffered for so very long without answers.  I also understand that drive for answers.  Don't stop until you get them.  And listen to advice given here...there is much wisdom in these here walls. :)   Hugs to you, girl.

JJ, I understand and appreciate where you are at with your response.  The dx was not a good thing, to me.  I don't like the road I am forced to go down.  Knowing the name of the road was something I needed...to know what to expect, per say.  There is still unknown, but just not quite so deep.  So I will never run a marathon...it wasn't on my bucket list anyways.  lol  There is still a lot I will be able to do and have plans of doing just that.  Just as I never planned to let MS rule me, I will not let this either.

Forgiveness is not necessary because your apology wasn't warranted.  You, too, have shared the last part of my journey with me and have been a huge support and shoulder.  I wouldn't trade that for the world.  That's what friends are for, right?  Hugs to you.

Thanks again, everyone.  Don't think you are getting rid of me now though.  I already scratched my name in my chair.  Possession is nine tenths of the law, right?  ~grin~

Addi

[sllowe]

Addi girl,

What a heartfelt message of pursuit and persistence. Also, one of hope and answers through pure determination despite obstacles inbetween and throughout.

I'm proud of you - and also happy (though I'm sure that sounds weird) for you because you now know what you are facing. I know nothing about what you have, but look forward to learning from you.

I know you'll stay right here with us - right? You know we are avid hunters?

Sending you love and continued support.
((((hugs)))
shell

[anon07072023]

Hi Addi,

Thanks for keeping us up to date on what's going on. I had wondered where you had went, since I haven't seen you post on here in a little while. I'm glad that you have a name now to attach to your symptoms.  Like you said - that just goes to show you that you shouldn't ignore what you feel isn't right with your body.  Unfortunately, I'm not surprised that they basically had told you that you were a hypochondriac.  But, you kept at them, which shows such great endurance and patience on your part.  I'm sorry it took so long for them to diagnose you.  All this time waiting.  

I have heard of Familial Spastic Paraplegia before, since I had found it when I was researching my symptoms. My dad had problems with his legs and so did one of his sisters.  I always felt like it was one of the things that I could have - in fact, still today, I kind of wonder about it.  

I haven't read your other post yet, but I will.  Good to see you on here again.

HUGS,
Kelly

[supermum_ms]

Addi, i dont know if your dx is a good thing or not, never heard of it but like ess said I dont like the sound of it!! Though i'm sure there is some relief of finally having a name, i have no doubt you will be in a bit of shock, and still trying to get your head around what it all means.

Addi gf please forgive me for not being able to take in your news, sorry :-(