Status
Not open for further replies.

limegreenphysicist

Distinguished member
Joined
Feb 19, 2010
Messages
228
Country
US
State
Alabama
City
Auburn
Hey you guys,

Sorry for being a stranger lately. School and life is just so crazy right now. I wanted to come and update my story for those that have been there supporting me and following me through all of this.

I had my another check in with my doctor yesterday to test my strength, reflexes, and atrophy..blah blah..you know how it goes.

So my strength is still 5/5 all around. My Romberg is now absent which is a switch from falling over to the right at the ALS Clinic in April. My reflexes have gone down in my legs but are still quite brisk in my arms. Still no clonus, hoffmans, babinskis..nada...he jerked on my ankles for awhile of which I had to remind him that I was still in a quite a bit of pain.

He also noted no new atrophy or thinning. My tongue looks quite good, no twitching, and my speech is pretty good. A little choppy and slow every now and then but most days I rattle off. so I was happy with my visit and he noted significant improvement from the last time he saw me in his notes to my doctors in Atlanta.

They ran a battery of new tests one to check for vasculitis bc of the livido reticulitis they found in my legs. They also ran my new Western Blot for Lymes along with a CD57 to see how the treatment is fairing against George.

If the WB comes back negative of which he doesnt think it will, then I dont have to go back on Rocephin and they will just continue treating the multiplex. I think I am ok with that.

I have been walking all over campus, I played my first game of volleyball this week and played another game yesterday and went out dancing last night. I feel so much better. The twitching is almost non existent.

I am hoping things continue on in this way. My followup EMG is in Sept. and I'm hoping that the multiplex will have improved. I feel as though if it were going to get worse I would definitely not be 5/5 after 5 months.

Oh and I dont have to use my mouth guard anymore at all. And I am no longer clumsey and dropping everything.

My only residual is my speech and extreme back pain. Feels like sciatic pain.

I hope everyone is doing well and I have been surprised by how positive thinking has really helped me get back to me.

I see you guys have had your hands full with all the new crazies. I love you all and I miss you all terribly.

Love,
Kelly Belly
 

Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
I'm so glad your improving Kelly!
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Wonderful news! Your upbeat attitude is welcome and appreciated :) Keep us updated, and enjoy your summer ... dancing and volleyball ~ way to go!
 

Twinsmom

Senior member
Joined
Sep 2, 2009
Messages
604
Diagnosis
07/2009
Country
US
State
FL
City
Miami
Soo so sooo happy for you that you are improving and feeling better!
You go girl!
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
Way to go Kelly, I am so glad that you're doing so well and hope that you keep on dancing the night away!
 

sharona

Distinguished member
Joined
Dec 8, 2006
Messages
488
Country
US
State
il
City
joliet
Very glad to hear about your improvements.keeps up the good work girl, were all pulling for you .God Bless
Sharon
 

JeffP

Distinguished member
Joined
Jan 8, 2010
Messages
293
Reason
PALS
Diagnosis
08/2009
Country
US
State
MI
City
Iron Mountain
glad all is working out for you,stay positive and keep up on your checkups
 

handinhand

Senior member
Joined
Mar 28, 2009
Messages
902
Diagnosis
02/2009
Country
US
State
Colorado
City
Pagosa Springs
Kelly, great news... I am so happy for you....you made my day! Hugs, Linda
 

irismarie

Very helpful member
Joined
Nov 21, 2009
Messages
1,384
Reason
PALS
Diagnosis
05/2010
Country
FR
State
tarn et garonne
City
valeilles
well done!good work on the mental front an good rezsults on the physical.Bravo
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Glad to hear things are better Kelly.

AL.
 

limegreenphysicist

Distinguished member
Joined
Feb 19, 2010
Messages
228
Country
US
State
Alabama
City
Auburn
Hey you guys...Heres another update on me...

Everything is so much better. I am still off my Lyrica for the pain bc I dont have any. I am no longer stiff. My twitches have ceased to about 2 a day maybe. Still have all of my strength and no new atrophy. The only thing I have residual is a little cramping in my foot every now and then if I move it funky. My speech is great most days. Sometimes its choppy but only when I'm stressed out.

I have been touring with NOPI and dancing my butt off every weekend without any repercussion. The only annoying thing is my eyelid twitch. Hate it!

I feel a 100% better than I did when I first came to this forum. I am still doing the Phosphotedylcholine and Glutathione pushes I am up to 9200 mg of glutathione a weel and we are going up gradually every week. I also do Hydrogen Peroxide IVs for the Lymes disease.

Oh and my Western Blot came back negative finally after 2 years of being consistently positive. Keep me in your prayers my followup EMG is September 5th.

Sorry havent been on much but I still find it easier dealing with my disease alone. But I love you guys so much and I appreciate everything you guys do for me.

Love,
Kelly
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
Kelly, so glad that you are doing so well. Keep on dancing!
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Excellent! As Barry said, keep on dancing.
 

lydia

Senior member
Joined
Jan 25, 2007
Messages
677
Country
US
State
ny
City
buffalo
That is fantastic news. What is NOPI?

Lydia
 

luvnmm

Distinguished member
Joined
May 15, 2010
Messages
295
Reason
Loved one DX
Diagnosis
09/2009
Country
US
State
VA
City
Henrico
Kelly -

Your news is fantastic! How wonderful that you are feeling better! Keep us posted on how you are improving. Dance the night away!
 
Status
Not open for further replies.
Top