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1318483 tn?1318347182

Well, here I am again...still dx'ed or maybe back to limbo?

MS forum letter 09-02-11
Hello, all-

Since I was dx'ed with Hereditary Spastic Paraplegia in June, I kinda took a far backseat on the forum.  I never could quite find myself able to get that second foot out the door but also felt out of place posting here being that MS was definitely off the table for me.  

I have kept up on here quite frequently.  I have seen a lot of new faces pop in as the forum family grows.  I also see so many near and dear familiar faces, as well.

To update everyone on me, at least since May of this year...though you need to remember that I am a gold member of the anon club so, as usual, my posting is LONG!  :)

In May, I had a Baclofen pump implanted for the severe muscle spasms I was suffering from, which was a life changer for me.  It got me out of the bed and walking again...though I have yet to toss aside the walker.  And I still have to use my chair for the long hauls...like whenever I leave the house.  

In June, I moved back to my home state of AZ to be closer to family, which included my newest grand baby boy.  We thought financially this would be a good thing because the cost of living is cheaper here.  This turned out to be wrong.  Moving allowed my SSI payments to stop, my state cash assistance to stop and we have yet to start recieving home health care for me, which my mom is my caregiver so that adds to our income.  So...our income cut in half by moving here.  We have been struggling and trying to stay above water, but it has been truly hard.  My mom retired in December but has been looking for part time work...still nothing.  

We are renting our absolutely perfect home, but then we learn the homeowner has separated from her husband and was going to let the house foreclose.  We only found out because she uses the same bank as I do and she didn't have that mail forwarded to her new address...I accidentally opened mail for her from her mortgage company...my bank...which showed missing payments and foreclosure talk.  The house is in the wife's name only (I actually don't even think they were legally married) and we have been working with her to keep the payments up, paying directly to the bank, and are seeing how we can possibly buy the house off her, with her carrying the note.  The good part is that we are paying less to the bank than what our rent was...so this has been one of the few good things so far.  All this is still very new and our fingers are crossed.  

2 weeks after I got to AZ, I was placed in impatient rehab after my dx.  This was VERY beneficial for me.  But, the day after I got home, the catheter on my pump failed, the meds were leaking into my body and I was back under the knife and in the hospital for a week.  After that, back in rehab for another 2 weeks starting from scratch.  

Since being home, I had in home PT/OT for like 6 weeks, I think, and then outpatient PT/OT which I was still in as of last week.  During this same time period, my pump has still been being tweaked and pain meds (Fentenyl) has been added to my pump to get me off the orals.  

The Fentenyl is finally starting to reach a dose that I can feel a difference, yet I am truly afraid of being on something so strong...what if the catheter fails again??  But, without it, I am in a considerable amount of pain.  So what to do??  The Baclofen is getting close to a good dose for me, as well.  It is higher than I had expected it to go though, but that is okay with me.  I still have spasms in my right hip quite frequently and we are working to control that.  

My ankles are very, very weak and this is a major problem with my walking.  PT is helping but an ortho has been suggested by my therapist for AFO's.  I also have drop foot...well, feet.  

I have yet to retain a neuro who is familiar with my disease that also accepts my insurance.  HSP is very rare.  So, I found myself at Mayo a couple of weeks ago.  I was nervous about going because of the feedback I had received here about Mayo experiences, but kinda found myself between a rock and a hard place.  The neuro that I saw is familiar with HSP and takes my insurance.  

So, I went.  He did a 300% complete neuro exam on me, way more in depth than I have ever had in the 7 years of being symptomatic.  While he did see deficits in the exam, he was a bit reluctant to agree with my dx.  This was a MAJOR fear of mine...returning to limbo land.  BUT, I do not want to have a dx of something that is inaccurate just to have a name...you know?  Another rock and hard place.

I just got out of the hospital from a raging UTI (yet again) and e coli.  I was in for four days.  I am feeling better but not up to par just yet.  So, as I lay in bed resting, my mom brings in my mail.  I have a package from Mayo.  I had been waiting for them to call me with a schedule for all the tests the neuro wanted to do to me.  Lo and behold, that is what this is.  So, next week I am headed back to Mayo three days in a row for test after test after test.  

While I was nervous about this neuro not completely agreeing with my dx, I gotta hand it to him...he is being thorough.  When I went to UCLA before I moved here, I was expecting this kind of care and definitely didn't receive it.  I got a loooooong nerve test that hurt like hell, which came out normal, a short neuro exam and then a don't let the door hit you on the way out.  Very discouraging.  

This Mayo neuro did tell me that if nothing comes from this testing, then we will do the genetic test for HSP that will absolutely confirm or deny my having it.  No one ever ran it because it is a $6000 test that insurance generally doesn't cover, but Mayo can get it done.  This is the reason my second foot never made it out of the forum door...my dx of HSP was never verified and I cannot find the Hereditary link...except for my dad's aunt who died of Motor Neuron Disease...which HSP falls into...no proof of hereditary doesn't really mean a whole lot either...but it does leave a wondering mind in me with my dx being accurate or not.  

As I am looking through my appointments for the Mayo testing, I see I will finally get EP testing done.  I don't know why, but this had me in tears.  During the 2-3 years before my HSP dx, I fought and fought for these to be done...and no one ever did them.  I guess seeing them in black and white hit a tear duct.  I am finally having them done.  

I also have a Psych appointment.  Which is fine with me...bring it.  Lol.  Oh, I forgot to say that before I moved to AZ I had a neuro psych eval done.  I got the results to it AFTER my HSP dx and while I was in rehab the second time.  The results:  Health Anxiety.  Somatization Disorder.  The neuropsych is rehab laughed and shrugged it off and tried to calm me down, as i pretty much lost it when i got the results.  She told me could redo the testing in 6 months...Funny, I pushed for this eval, requested the referral without a dr. prompting me to...so that I had black and white proof that I wasn't mental.  Well, that backfired.  Be careful, folks.  :)   I do have to laugh now...I don't think they put intrathecal pumps in hypochondriacs, right?  Please know I am NOT putting down mental illness or laughing at it, as I know it is just as real and just as serious.  But, it just isn't my answer.

So, here I am...two feet back in the door, finding my old comfy chair over here to sit and stay for a spell.  I may have HSP or I may be in limbo once again.  I honestly don't know.  I hope Mayo gives me some dx closure or something.  But, there is no where else I would rather be than here while I wait to find out...among old friends and new.  So, thank you for keeping my chair warm and empty for me...hugs to all of you.

Addi
16 Responses
667078 tn?1316000935
Wow you have a lot on your plate.

Alex
1382889 tn?1505071193
Well that's an understatment Alex. lol

Great to see you Addi!  A lot going on in your life as usual I see.  It is great to hear that the neuro at Mayo appears to be so good. We all know what a difference that makes.

As hard as it is to be open to the possiblibity that you don't have HSP, you are so right, getting the wrong dx just to get a dx is not comforting at all.

I am so glad you are back and giving us updates on your life. Sounds like most things, not all good, not all bad. You are handing it all so well though and with the humor I have grown to love.

Keep posting and hanging around and let us know how those tests go!

Julie
Avatar universal
Hey there, Addi! So nice to see you!

Thanks for that catch-up. Your posts may be long but they're thoroughly readable, and I always love your good humor.

It's good that at least some things are working out for you. I've got my fingers crossed for you about the house, and it was lucky you found out about the mortgage, etc.

As for the Mayo, I think our negative comments here have related only to MS diagnosis, so maybe don't hold the Mayo otherwise. Your new doc may be a keeper. How great that you'll be geting that genetic test. That will help their research as well as give you some answers.

The main thing I wanted to say, though, is that whether or not you have MS, you belong here, both feet! Please don't make yourself scarce.

Hugs,

ess
1225331 tn?1333365769
Well, welcome back home again, Addi.  :-)

I hope they can figure all of this out for you.  We all know that there's something going on.  Just because they may be second guessing your diagnosis, that doesn't mean there's nothing there and going on.  You have so much patience, but I guess you don't really have a choice.  Keep pushing them. I know you already know that.  

I hope your payment starts coming in again and your pump behaves itself.

Hugs,
Kelly
  
147426 tn?1317265632
Addi!! so good to hear from you!!  

I want to talk about a lot of your "On-and-On Anon" post but am short of time.  First HSP is exceedingly rare, but, of course that doesn't mean someone can't have it.  It's just that common things are common.

If this is a "hemiplegic" illness why to you need a brace on both legs?

Praying for continued relief from pain and good financial news.

Question - how well do you do in the heat of AZ?

Quix
572651 tn?1530999357
Hey Addi,

It really is great to get the thorough update from you.  I think it was Redflame who was just asking about you, but I may be wrong on who it was.  Anyway, you have been missed.  

Regardless of what the dx might be, I sure hope you will not be a stranger around here again.  You have lots to contribute even if this isn't MS.  Good luck with getting those benefits figured out and I hope your mom doesn't really have to get another job  - it would be great if she can just focus on you and herself.


It is great to hear someone having success at Mayo - we hear some good things about Mayo AZ vs Mayo MN.

Stay in touch, ok?  We've left the light on for 'ya.
hugs,
L

1045086 tn?1332126422
Well that 'ill teach ya better than to try and get outta HERE!

So true with the diagnoses--be it MS or HSP or ATE (AnyThing Else)--no diagnosis is a good diagnosis if it's the wrong diagnosis.

I hadn't realized there were so many holes in your diagnostic workup Addi.  I hope Mayo gets this right.  At least you don't have to be in a big hurry now that you are on a good path for pain control and PT.  I hope they can get the sleep disorder bugs out of the bed as well!  (That's a neuro thing after all.)  There are good and bad everywhere - Cleveland Clinic and Mayo included -- way you find the very best ;-]

Please! please!! please!!! tell me there is no plan for an LP in that packet. (please)

You understand now that there is no exit door here.  Correct?
Mary
1318483 tn?1318347182

Alex - you took the words right out of my mouth!

Julie - it is great to see you.  :)   I am trying real hard to put forth that humor, but it truly is getting harder.  I am tired.  I mean really tired...and beginning to feel sorry for myself, which scares me a bit.  That plays a part with me putting both feet back in the door.  This forum family has always given me strength.  

Ess - so nice to see you, too!  One of our long time family friend's daughter works at this Mayo.  I do completely trust her medical judgement which helped me push forward to make that call.  I am glad I did.  You know, this neuro makes #10 for me, I think.  And he is the ONLY one who ever disregarded my MRI reports and took my discs for viewing.  Yes, a keeper.  And I would feel so much more comfortable with the genetic test, both for research and for me and my family.  Thank you so much for the warm welcome to my feet...I never can seem to keep them warm!  Lol!  Hugs!

Kelly - thank you so much!  :)   I think my patience is wearing thin at the moment.  I know God doesn't give a person more than they can handle...but I can't help but wonder if he has me mistaken for someone else, ya know?  You keep reminding me to keep pushing, ok?

Addi
1318483 tn?1318347182





Quix - well, it is great to see you back on a regular basis, my friend.  You had one hell of a year yourself and it is good to see you poking your head out the other side.  Much love and support to you.

I see I left out part of the anon club name...only because I used up all my allowed characters though.  Haha!  True, HSP is very rare, but would you believe there are 8-14 people in AZ with it and close to the same number for PLS?  I know that doesn't sound like a whole lot.  But when I was given my dx, that number sure sounded big to me.  We are all suppose to be meeting in person at the end of this month.  

Barrows/St. Joe's is where I went to have my catheter replaced on my pump.  My neurosurgeon is very well versed in HSP and did agree with the dx.  So does my pump doc/nurse and they are very familiar with it, as well.  The nurse is from Barrows (17 years).  So, who knows?

HSP is actually not hemiplegic.  Here is the best place to refresh your memory:  http://www.sp-foundation.org/hsp.html  It actually covers HSP, SP and PLS quite well.  I have joined a nationwide online support group for HSP/PLS and there are more members than I was expecting.  And they are good people, like here.  No drama BS.  AFO's on one or both legs are actually quite common, from what I have learned from the other list members.  I do have an AFO for my right foot already.  I have had it for over a year now.  It needs adjusting before I can wear it again though.  It hurts my ankle and my foot goes numb when I wear it. PT said quit wearing it.

Hmmm...how well do I do the AZ heat?  Well, I was born and raised out here in this vast desert with the gila monsters and rattlers. Lived here for 30 years and worked outdoors for 8 of em before moving away.  I thought NO PROBLEM.  Well, all I can say is AIR CONDITIONING??  Lol!  I am absolutely not handling the heat.  :/   And, I haven't seen a gila monster or rattler since I got back...though I did see a roadrunner!

Lulu - thank you for the warm welcome.  Lois did call me last week and I did try to call her back tonight, but missed her.  I sure hope my mom doesn't have to return to work either.  I truly do.  As far as Mayo, yeah I am hearing the same thing between MN and AZ.  Makes me glad I never figured out a way to do the MN one when my CA neuro wanted to send me there...everything happens for a reason, right?  Thanks for the light!

Mary - I didn't forget you.  I am having phone issues that started before I even finished my call with my dad.  :(   It has been sporadic ever since.  I will have to *try* to make a call about that tomorrow.  Call me when you have a few.  No LP in the packet.  I don't know that I would have consented for it if it was.  I do have the reports on the four I have already had done and I believe he saw those on my initial visit.  Whew!  There is lots of labs...hope they can find a decent vein by then...they are no good right now.  There is oncology, PT, pulmonary, EP, another neuro procedure but it doesn't say what, psych...well that is what I remember at this point.  No nerve tests...I took in all my results for those damn things, too!  Lol!

Yes, I understand there is no exit door here...but I have no intention of letting go of my comfy chair again so no worries.  Ya'all are stuck with me from here on out, no matter what the outcome may be for me.

Addi
1406332 tn?1315962760
Welcome back Addi,

You've had quite the journey this year. Just wanted to say hello and sorry you are going through all of this.

I would hate for you to have to be in limbo again, but you deserve a clear answer.

Wish you all the best! Keep staying strong, we'll all get through this!

-Kelly
Avatar universal
Thanks for sharing, I found your post very interesting and I feel for you as I know that getting a diagnosis and then having it changed can be very confusing and emotional.

I agree that you are best not to have a name for the sake of having a name, especially if the name is incorrect, but most people in limbo would give anything to have an answer for their problems as with correct answers then we can learn better how to deal with our symptoms/problems, know what our future might hold (not that any of us know that) and can get the correct medical care and even join others for support who might be in the same situation.

Thanks again for sharing, I hope that the Mayo Clinic can give you some answers.

Cheers,
Udkas.
739070 tn?1338603402
Addi!!!

SO GOOD to hear from you!!! Sorry I haven't gotten back in touch with you.

Just some minor set-backs, various areas of tendinitis, pneumonia with 2 rounds of antibiotics, and some good things like my daughter getting her White Coat from Pharmacy school!!!!!!!!!!

I am so glad you are getting the work up you needed all along! I know you'll keep us updated. I also know you can make it through this next journey. You have the stamina and determination only a redhead can respect, lol. I promise I'll call you after the Mayo testing and if you need to talk you call me anytime.

Keeping you in my thought and prayers!!!

Ren
147426 tn?1317265632
When I worked in the Indian Health Service in Yuma, AZ (can't we all say HOT together?) I flew many a patient to Barrows.  Great place!

Quix
1318483 tn?1318347182

Kelly - yes, I have had quite a year.  :/   Stop this roller coaster, I want off!  lol.  Thank you for the kind words.

Udkas - yeah, I have found myself to be pretty emotional and very sensitive right now.  I do understand completely the feelings and thoughts and anguish that people go through in limbo.  I lived it for seven years.  I just got my current dx in June.  I haven't even completely absorbed this dx yet and it is now being brought out for questioning.  So all of my limbo feelings came flooding back in a flash.  For me, this is worse than when I was in limbo.  :(

One of my greatest wishes is for all limbo landers to get their proper dx quickly.  No one deserves to be in that position.  Thanks for sharing.  Hugs.

Ren - no worries.  I knew you were having a spell of your own.  Congrats to your daughter!!  Wow, you must be so proud!

Thanks for that redhead reminder!  See, that is why I love you all.  You remind me of the strength I already have that has gone a bit dormant.  Thank you very much, my redhead sista!

Quix - Yuma??  Hot??  Can we sat sweltering??  Lol!  And I have to agree, Barrows is excellent in care.  And it just seems to get better as time goes by.

Addi
1088527 tn?1425313375
Addi
so nice to hear from you again glad to see you are making progress with the pump and hope they get it all figured out soon. you are getting out of the chair and thats the best news to hear though its baby steps for now but its progress no less. I hope you will be able to get the blood test and have a definate diagnosis I would hate to see you back in the land of limbo though its been fun to have you with us its best to have a diagnosis. wish you the best and keep us updated

Kat
198419 tn?1360242356
Addi  - You are one tough cookie you. Failed pumps, back under the knife for fixes and returns for infection, and here you are showing us, all of you!

Thinking of course they'd think you'd likely not have it, it is rare afterall. The odds are just not there - but then again, all your odds were already looked at. I pray you can feel firm in what is going on, and you get good care.

Thank you for telling us everything you could - it's always a pleasure to hear from you - none of this could of been a breeze - took guts to get through and a whole lotta other stuff only my imagination can fathom 1st hand.

Miss ya,
~Shell
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