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lydia

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I see my new neuro tomorrow and I wanted him to see what the stiffness/slurring/drooling/balance issues are for me so I didn't pace myself today like I normally do. I ran errands, shoveled some snow, cleaned the house, etc...and now I am so stiff I can barely climb the stairs, get out of a chair, or lift my arm. I am going to continue this marathon tomorrow morning if I can even move at all and then drag my sorry butt to his office...no more describing, "well when I do ordinary activity strange things seem to happen to my body..." I am going to SHOW him what happens. I may have to lie still for 3 days after but by golly he is going to be a witness.

I am almost ready. The cramps in bizarre spots are already making their appearance, my gait is lurching, the twitches are thumpers, the slurred speech stars in every spoken sentence, the froth is spilling from the corner of my mouth like a geyser, and the slightest nudge sends me flying. Nothing like getting all gussied up for my special guy.

AND I am going to wear my pants that fit in August and that fall off now so he can see that I lost 15 lbs in 3 and 1/2 months without trying and while eating a McDonald's value breakfast 5 days a week...I lost it all in my bottom and thighs. I now have quite the bony ass and can not tolerate an uncushioned seat. Seriously, how am I going to ask him what he thinks of my ass? with a straight face, I mean?

Going to bed now-I was going to throw a little sleep deprivation into the mix, that really does a number on me but decided I would actually like to get to his office alive.

Goodnight!

Lydia
 

ktmj

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If I were you I would turn around in that flattering nice clinical gown and say "Hey Doc, check out my butt.":lol:

Best wishes for a good visit Lydia.
 

planningguy

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Good luck! Let us know how it turns out.

In regards to the gown commnet. Have any of you seen William Hurt's, "The Doctor." Not my favorite movie, but there is a fun scene where he makes all of the residents hang out in "the gown" to help them understand how a patient feels.

Robert
 

BethU

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Lydia ... Good for you ! This is why people say "Show not tell!" I bet you will have a BIG impact !

I did a demo at my clinical trial appt last Friday. They wanted me to take a new pill so they could do an EKG 90 minutes later, so I took the pill and a swig of water, and the water squirted out of my mouth all down my front, and I tried to catch it with my hand, and they came running with paper towels, and I clamped them over my mouth, and after a couple minutes of me grinding my jaw trying to get my throat muscles to kick in, the pill went down, and I did a victory pose, arms in the air.

And the neurologist said in an awe-struck tone, "It that what you go through all the time?" And I thought to myself, "Bingo."
 

crystalkk

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Lydia,

Good luck and that's a great idea, maybe I need to do the same thing!
 

olly

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hi lydia

ive been there,done that:lol:
great minds think alike:wink:
but it is a gruelling procedure to get your point accross,the aftermath is not good.
hope you have not done too much damage to get your point accress,hope the appointment goes well.
 

lydia

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neuro update

So I saw the new neuro. Remember he is a PD specialist and my main goal was to remove the PD option off the table, and hopefully gain some insight into what's happening....(heavy sigh)

So...first off I saw "The Fellow" instead and gosh I hate to say this... English isn't her first language and it showed. I had to repeat many many things, I had to spell words, I had to define words, I had to act out meanings. I was so frustrated and I feel like a beast for wishing for a doctor who really speaks the same language I do. I currently have a child living abroad in a country where she does not know the language and is learning it while there and I have many friends from India, China, Pakistan, Turkey, etc.....so I don't want to be this rotten and culturally-insensitive clod...but gee whiz...it shouldn't have to be this hard.

Endured the absurd strength tests where I overpowered her every time.

Talked about my fall down the stairs to have her tell me with certainty I must have mis-stepped. Funny, I have gone over the fall in my head over and over again and I have no idea why it happened, but she knows despite not actually being there. Ok fine.

Finally met with the neuro himself (and OMG, gorgeous doesn't do him justice). He was patient, kind, attentive. My entire visit was nearly 90 minutes between the both of them and never being alone in the room.

So this was his interpretation: I don't have PD (whew!). My weight-loss that has produced my bony ass, along with my "appetite change" (translation: get weak and shaky when hungry) combined with my other issues (sore & stiff muscles, twitches, cramps, walking difficulties, drooling, slurring) that seemed to begin 2 years ago initially as fatigue....all suggest....brace yourselves.....a physical manifestation of some internal stress. I couldn't freakin believe it. I saw it coming too, when he started in with the weight loss and the appetite change...the focus on fatigue...I was thinking , "don't go there, DON'T GO THERE" and then he said it aloud. He reassured me not to take this as some sign of weakness on my part, that it happens to many people, and that if I was interested, I could try some anti-depressants. Or perhaps acupuncture.

I am still reeling from this. I know none of you know me "for-real" but when I am stressed, as I sometimes experience, I just curl up in the fetal position until I feel strong enough to face what ever is bothering me. And that is that. I have a job I love, wonderful friends, great kids, enough money to pay the bills and play, an adorable house, a still intact retirement, creative hobbies....I describe myself as content; lucky. So do my friends, and with envy. Stress? From where I asked him. He said sometimes it's unconscious stress.

I tell you what-beautiful people get away with so much. Because he was so damn good-looking (and BethU-I know you know what I mean) I smiled the entire time he shared his impressions with me. I smiled when I disagreed. I smiled when I said I hope he wasn't giving me the usual bullshit diagnosed men give women when they don't know what's wrong with them. When he acted a little bummed when I said that (his eyes weren't as sparkly, his smile not so bright), I smiled and was quick to reassure him that maybe he was right, maybe I am stressed while completely oblivious to it, and that sure I'll take that acupuncturist's number.

Don't get me wrong-- because he is a specialist in PD I believe what he says and that I don't have PD...and that was my primary objective in going. I was just hoping for some more insight into the other issues as a secondary benefit of seeing him. I would have rather he said that the other stuff was just outside his realm or that he had no ideas about it instead of suggesting it originated in stress. But he is forgiven.

So I am off to curl up in the fetal position and drool on the couch cushion, talk to you all later-

Lydia
 

planningguy

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Lydia,

I'm sorry the trip wasn't what you were hoping for. The internalized stress diagnosed is incredible... Maybe you should have asked him for a prescription for a "woman's tonic" (94 proof at least, please).

I went through the anxiety discussion with my PCP a year ago before some of my other symptoms emerged, and thankfully after the swallow study and me giving him the look several times, he dropped it. The Lexapro adventure was a nightmare anyway. I felt as though the little angel and little devil who sat on my shoulders had somehow been merged into a little pot smoking hippy who sat on my head. My work colleagues did get a kick out of some uninhibited comments I made during that period.

I think you are right though. Many specialists excel in telling you that it is not the disease they specialize in. I guess medicine has gotten so specialized and the liability concern is such that few, "think out loud" anymore. When people do comment out of their sphere sometimes it almost sounds like they are making stuff up as they go along.

I just wish more doctors would talk to each other. Watching them read each others notes with you in the room, and realizing that you are going to get 5 minutes of reflection at best, drives me nuts... While I am wishing I want some ice cream... and a pony :?:

Better luck in the near future,

Robert
 

ktmj

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Lydia I'm so sorry you got the stress runaround. I got it too from an ALS specialist! Tapped on and tugged on a little bit and out the door.

Don't you wish you could change bodies with them for just 15 minutes? 15 minutes is about all it would take to change someone's mind about what we are experiencing.

Anyway, best wishes and hope you did not overdo getting ready for the appt.

p.s. What has looks got to do with it?:D
 

suzannj

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Lydia,
I'm not feeling very eloquent right now, so I'll say the very first thing that really came to mind when I read your post:
Mother F*&^ER.

I'm reeling a bit too, so I can't fully wrap my head around exactly what you must be feeling right now. Incredibly, crushingly, disappointed might begin to touch it. Stress? Really? I mean I do believe in the merits of non-westernized medicine and even tried acupuncture twice myself, but that really was what he said? If that's the case, after I sign off I'm going to shove some knitting needles through my head and maybe THEN I'll feel better too.

Okay.....deep breath......on the up side you don't have parkinsons. That's good news. On the up side, acupuncture is quite nice actually and there is a great place in the city (on Hertel if I remember correctly) that I visited a few years ago. I'll look it up for you and if she's still practicing I'll PM you with her information because she was great. Just her presence was very calming. On another potential upside of this appointment, it's one more person who thinks you don't have ALS because I'm sure if he (and/or she) did, they would have been more reserved in putting a label on "it" at all and just said that maybe you need to see another neuro at Jacobs who specializes in MND.

After you gather yourself and your thoughts and your fortitude from this, you'll have to decide what to do next. I feel like it's inappropriate to even say "have a good night", but I truly hope that you can muster putting in a favorite movie, having a glass of wine or six, and looking forward to tomorrow . . . no wait . . . tomorrow we're having a huge snow storm . . . .so look forward to the weekend . . .no wait, there's another storm coming on Saturday, sooooo, well there's always Christmas :)

You can get through this, and you're doing everything you can for yourself and your health and that's all you can do right now,
Take care,
Suzann
 

lovelily

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Hi Lydia....So sorry that the 'good looking' doctor blew you off! :( I just wanted to tell you that before I had my muscles biopsies, doctors tried to pin (not PCP) conversion disorders on me. I was already in the hospital for a series of small 'CVA's, so this is something that 'I' was NOT interested in hearing.

In came the psychiatrist, and out he went and hour later to say that I was 'normal'....:lol:

Anyway, I had 2 biopsies that were abnormal. Sometimes doctors are wrong.

Remember the song...'Miss Suzy'? She had a baby, and called him tiny Tim. She put him in the bath tub, to see if he could swim. He drank up all the water, he ate up all the soap, he tried to eat the bath tub, but it wouldn't go down his throat. Miss Suzy called the doctor, Miss Suzy called the nurse, Miss Suzy called the lady with the alligator purse.

Anyway....the song goes on, but the point is so many times I have felt like Miss Suzy with the hundred doctors not getting it right.

Maybe you have the lady with the 'alligator purse'....She couldn't help 'Tiny Tim', either!

sending love
 

sdsyd

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Lydia-

Its Christmas. Get your teeny tiny peppermint stick of a butt out of the fetal position and go kick some Happy Snowmans arse after having some spike eggnog. Then find the address of the neuro and egg his house.

All kidding aside- Im sorry you didnt get answers. Many of us here have gotten the run around and know all too well the frustration of hoping for direction and then feeling like you are sent running to chase your own tail.

DONT GIVE UP.
HUGS
Love,
Cindy
 

brendapals

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lydia,
I certainly will keep you in my thoughts and prayers my dear. What a wild week you have had! And damn it, why did the neuro have to be so good-looking?:lol:
It is great that you don't have PD, that way you can scratch that off your list. I remember all too well when I went to my former neuro in March 08, he told me my slurred speech was all stress-related, and wanted me to go on Klonopin, I nearly fainted.
Rest yourself, enjoy the holiday season, and
Never give up,
Never let up,
Never lose faith,
brenda
 

lydia

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You guys are great. I love this place. And some of you wonder why us un-diagnosed don't leave....well....stop being so supportive, so welcoming, so nurturing, so fun. :lol:

I spent the evening pretty bummed. But yahoo, today is a snow day and all the schools are already canceled. Even though not one flake has fallen. The anticipation of being cocooned in the house all day is exhilarating. So I have unrolled myself from the fetal position and will look forward to the mitochondrial angle (despite there being some glitch in arranging my visit and my GP's office taking, as of today, 3 weeks to fix it. Arghhh). And I have decided that after that...no more searching. I will just wait for a break in the case, so to speak. I am not any good in situations where I have to advocate for myself in a conflict, and being in those situations...or just the thought of being in those situations, is enough to make me curl up in a ball. Wimpy I know, but whatever... it's how I am and that's that. I think the search for an explanation is going to make me nuts. I am only 6 months in and I am already feeling dread about any future doctor visit. Even the mito Dr whereas before I was feeling excited...and I don't want to let those negative emotions in my life. I don't know how some of you do this for so long.

Robert and April, I take it Lexapro (sp?) is the infamous anti-depressant? I wonder, if I take it and the symptoms remain (or go away...I mean-who knows?), does that remove depression/stress from the list? I don't know if I could force myself to do it. Hey, I'll take a narcotic pain killer just for fun...but an anti-depressant...I don't know.

Brendapals, are you kidding...in March of this year a neuro said your slurring was from stress? What did you sound like in March? And did you let him know what happened this summer? I realize you have much more important things to think about and do than to shove evidence of a neuro's cop-out in his face....but still...

Lovelilly, Cindy, Ktmj -thanks for everything. You all make me smile. Can't help it...getting a little misty-eyed here (uh oh...kum-bay-ya alert!)

Suzannj, I'll think about the acupuncturist...keep you posted! Enjoy the snow. It is 7:34 and still nothing. It better come...I have the Christmas lights on and everything. We are ready.

Lydia
 

awieleba

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I am glad that you are feeling better!

We have a snow day and ton of snow and heavy winds, so brace yourself...it is coming. This is going to be a long day with the kids! I told them we would bake gingerbread men (or gingerbread 'people' would be more political correct for any feminists) and watch x mas movies and do x mas puzzles. I hope this keeps them occupied.

I really like what you said about 'waiting for a break in the case'. I am at that point. After x mas I may go to my infectious ds doctor and do the lyme test (I did have a fishy looking bite while preg) and redo my auto immune panel, and one last emg and then be done. I do dred the doctors visit as well. I will bring the mito angel to my doc as well. I want to just stop, but I have to push on for my kids in case it something other than some form of MND.

take care today!

april
 
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