Diagnosis: PLS confirmed Jan 2001 by Dr. Reazis

Has your diagnosis been confirmed by a 2nd neurologist or clinic?  Yes, by Dr. Elbey Siu School of Med

Were you misdiagnosed prior to PLS dx? No

How long did it take you to get a diagnosis? 1 year

Symptoms: 1998, foot drag on left side (only when cold); May 2001, spasticity on both sides;  2002, peculiar gait on both sides; 2003, fatigue (baclofen was causing it); 2004, arm/hand on life side; 2003, startle reflex but has about gone away, fasciculation.

Date of Treatment or Aids you use: 2001, baclofen and zanoflex; 2002, canes; 2003, wheeled walker if I have to walk far (quit taking baclofen and zanoflex); 2004, low dose naltrexone 4.5 mg (fatigue gone away)

What bothers you the most in regards to lost functions or abilities? I have to do every thing slow, and the falling

Are you participating in the NWU or NIH study? No

Any family (living or deceased) with a similar neurological disease?  No

Is there anything you attribute to your onset of PLS?  Yes, welding for 27 years
Family, household, hobbies info: Married, 3 grown kids, help with house work, do all the yard work, drag race every weekend April to November
Employment info:  Worked as a railroad car man for 27 years, was pulled out service when they found out I had PLS, went on railroad retirement in 2001
What new activities or interests have opened up to you?:  Have drag raced for 30 years, so I spend more time in the garage now
Address:  Decatur, Illinois,  USA     Share my data: Yes     Submitted: 2/28/05

Rutschow, Dale       Gender:  Male      Date of Birth:  Mar 05, 1953

Diagnosis:  PLS confirmed in Dec 24, 2002 by Dr. Fodor

Has your dx been confirmed by a second neurologist/clinic?  Yes, Denver University, Dr. Corboy

Where you misdiagnosed prior to getting a PLS dx? Yes, pinched nerve or maybe MS

How long did it take you to get a diagnosis?  3 months

Symptoms:  10/1999, fatigue; 02/2000, arm/hand – left side, started with pain;06/2002, falling, just stumbled some, like my knee went out; 09/2002, falling, whole left side just stopped for a second; 06/2000, arm/hand, left side, moved into my arm and hand; 12/2002, left side, falling, had to get cane; 11/2002 peculiar gait

Other Symptoms:  11/2002, fasciculations, mostly in left arm/hand.  Startle reflex, but got very bad in 8/2004.  Nov 2003 startle reflex, cramping (left side) emotional; Feb 2003 moving to my right side; Oct 2002 bladder problems; 6/2004 swallowing, and breathing.  Breathing problems from Baclofen OD.  Emotions very difficult to control and very extreme.

Treatment or Aids you use:  2001 Relafen, 2002 cane, 2001 Robaxin, 2002 Ditropan, 2002 Cardura, 2003 Baclofen, 2003 Prozac, 2003 walker, 2003 electric wheelchair, 2004 Baclofen pump, 2005 Botox in legs.

What bothers you the most in regards to functions or abilities you have lost?  The fatigue, there are days I can't hardly move or think.

Are you participating in the NWU or NIH study?  Yes

Do you have any blood relatives (living or deceased) with a similar neurological disease?  No

Is there anything you attribute to your onset of PLS?  Yes, Chronic Epstein-Barr virus

Family, household, and hobbies info:  Can't do much due to pain/fatigue.  If I get over these I do genealogy and love cooking..  Computers!

Employment info:  My doctor put me on disability in Jan. 2003.  I just cannot concentrate; I did computer support, doing crash dumps and the like.  He tells me that I should not plan on going back to work.  The physical part, while bad, is nothing to the mental...   On full disability.
Household chores, daily living info:  My wife has to do just about everything.  Have a ramp van.
What new activities or interests have opened up to you because of your disabilities?  None, such rapid progression and painful.  Well, I did start Colorado Connections support group in 2003.

Additional Comments?  This should do it now.

Address:  Colorado Springs, CO USA              Share my data: Yes

Email Address:  dalerutschow@adelphia.net   Submitted:  04/2003   Updated 12/2003, 3/2005

Slabe, Maggie       Gender:  Female      Date of Birth: Feb 23,1947

Diagnosis: PLS confirmed in Oct 1998 by Dr. John Becker

Has your dx been confirmed by a second neurologist/clinic?  No

Where you misdiagnosed prior to getting a PLS dx?  No

How long did it take you to get a diagnosis?  6 years

Symptoms:  1989 falling; 1990 peculiar gait, right side; 1992 arm/hand, right side; 1993 foot drag, right side

Other Symptoms:  2001 extreme startle reflex, increased spasms, increased spasticity and loss of balance

Treatment or Aids you use:  1999, Zanaflex; 2000, using cane outside of home, pain management; 2002, forearm crutches for balance

Are you participating in the NWU or the NIH study?  No

Do you have any blood relatives (living or deceased) with a similar neurological disease?  No

Is there anything you attribute to your onset of PLS?  No, stress and trauma

Family, household, and hobbies info: Married, 2 children who are also disabled

Employment info:  I lost my job Sept. 2002.  I am not eligible for disability.  I was a teacher's assistant in a non-profit school for special needs preschoolers.

Household chores, daily living info:  I'm still driving, but I see it coming to an end.  I did have a left foot gas pedal installed and that has kept me driving this long.  My husband does many of the daily chores that I used to do.  I rarely try to go up or down the stairs anymore, as I haven't the leg strength needed.  I now sleep in a recliner chair as a bed gave me intense neck, head and back pain.

Address:  Youngstown, Ohio USA

Email Address:  mrs47@ameritech.net     Share my data:  Yes

S M                  Gender: Female      Date of Birth: Oct 03, 1962

Diagnosis: PLS confirmed in Nov, 1998, at Beth-Israel, Boston

How long did it take for you to get a diagnosis? 6 months

Has you diagnosis been confirmed by a 2nd neurologist? Yes

Were you misdiagnosed prior to the PLS dx? No

Symptoms: Nov 1997, foot drag, left side; foot drag, right side; arm/hand; speech
Treatments or Aids used: Zanaflex

Are you participating in the NWU or NIH study?  No

Do you have any blood relatives, living or deceased, with neurological disease? No

Is there anything you attribute to your onset of PLS? No

Employment info:  Not working now.  I was a Graphic Artist.  I am applying for SSDI

Household chores, daily living info:  Spouse does most of shopping now.  Still driving.

Address:  Bangor, Maine, USA     Share my data:  Yes  

Smith, Scott         Gender:  Male    Date of Birth: Jul 26, 1953

Diagnosis: PLS confirmed in Oct 2000 at UCLA

Has your dx been confirmed by a second neurologist/clinic?  Yes

Where you misdiagnosed prior to getting a PLS dx?  Yes, ALS

How long did it take you to get a diagnosis?  4 years, 10 months

Symptoms:  Jan 1996 speech, falling, foot drag; Jan 1997 arm/hand

Treatment or Aids you use: 2001 cane; 2002 Neurontin

Are you participating in the NWU or the NIH study?  Yes, both.

Do you have any blood relatives (living or deceased) with a similar neurological disease?  No

Is there anything you attribute to your onset of PLS?  No

Employment info:  US Navy (retired due to disability)

Household chores, and daily living info:  I can still do most anything, but VERY slowly and carefully.

Address:   Chesapeake, VA

Email Address:  Scottusn@cox.net      Share my data:  Yes          Submitted:    12/2002

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Spellmann, Maribelle          Gender: Female       Date of Birth: 03/03/1943

Diagnosis:  PLS confirmed in 11/2005 by Dr. Joseph Schmitt, Loveland, CO

Has a 2nd neurologist or clinic confirmed your diagnosis?  No

Were you misdiagnosed prior to PLS dx?  No

How long did it take you to get a diagnosis?  Few weeks of testing

Symptoms:  July 2005, foot drag on right side; March 1983, fatigue; August 2005, falling and spasticity

Are you participating in the NWU or NIH study? No

Any family members (living or deceased) with a similar neurological disease?  No

Is there anything you attribute to your onset of PLS? No

Additional Comments?  Did not know I had hyperreflexia or clonus or stiffness in my legs until the neurologist told me.  Now, I notice the stiffness in my legs when I get up and down.  Have developed overactive bladder in March 2006 with Urge incontinence, urinary frequency and urgency.  Have developed plantar fascilitis in my left foot in March 2006.  Have occasional cramps in my toes for past few months.  In the past, I developed terrible fatigue and depression in March 1983.  Have had balance problems concerning needing to hold onto my husband's hand when going downhill when hiking or when going down stairs.  I feel like I will fall forward.  These balance problems have gone on for years.  Have been very sensitive to heat and high humidity, consequently, I love living in Colorado now.  Have problems with memory loss. MRI showed a few white spots in frontal lobe and parital lobes.  Thought my symptoms were closer to MS, but neurologist says tests show PLS.

Address:  Loveland, Colo.                          Share my data: Yes

Email Address: mari43spell@yahoo.com       Submit: March 16, 2006   

 Spencer, James          Gender:  Male     Date of Birth:  Dec 21, 1956

Diagnosis:  PLS confirmed in Oct 2002 at Johns Hopkins Medical Center

Has your dx been confirmed by a second neurologist/clinic?  No

Where you misdiagnosed prior to getting a PLS dx?  No

How long did it take you to get a diagnosis?  2 years

Symptoms:  Jun 1999, foot drag; Jun 2001, arm/hand

Treatment or Aids you use:  2002 Rilutek, 2002 Celebrex

What bothers you the most in regards to functions or abilities you have lost?  Walking problems

Are you participating in the NWU study?  No, I sent e-mail twice and have not received any information

Are you participating in the NIH study?  No, I have submitted the questionnaire

Do you have any blood relatives (living or deceased) with a similar neurological disease?  Yes, brother with neurofibromatosis

Is there anything you attribute to your onset of PLS?  No

Family, household, and hobbies info:  Wife and three children. Dog.

Employment info:  Yes. I have an office job but I have to travel 30-40% of my time.  I have problems with finger dexterity on my right hand that causes problems with typing.  When I travel, I have problems walking and get fatigued.

Household chores, daily living info:  I am still able to do most things, only slower.

Address:  Frederick, MD USA

Email Address:   spencerusa@xecu.net     Submitted:  05/2003

Springer, Sheela      Gender: Female     Date of Birth: 1935

Diagnosis: PLS confirmed in 2003 by Dr. Genge ;  Montreal Neurological Institute- Mcgill
Has your diagnosis been confirmed by a 2nd neurologist or clinic? No

Were you misdiagnosed prior to PLS dx? Yes

How long did it take you to get a diagnosis? 3 yrs

Symptoms: 1998, falling and tripping; 1998, falling and foot drag, peculiar gait; 2003-2004, urinary infrequency
Date of Treatment or Aids you use: 2003,  baclofen pills 10 mg 4x; 2004, baclofen pills 20 mg 4x a day; splint made for right leg, cane.
What bothers you the most in regards to lost functions or abilities? The inability to walk and continue in most of my exercise classes.  I walk like I'm drunk.
Are you participating in the NWU or NIH studies? No

Any family (living or deceased) with a similar neurological disease? No

Is there anything you attribute to your onset of PLS? No

St. Julien,  Paige       Gender: Female     Date of Birth: 04/07/1963

Diagnosis: PLS confirmed in 01/2004 by Dr. Gutierrez- MDA clinic

Has your diagnosis been confirmed by a 2nd neurologist or clinic?  No

Were you misdiagnosed prior to PLS dx? Yes, ALS

How long did it take you to get a diagnosis?  2 yrs

Symptoms: 6/2000, arm/hand left side (difficulty working above my head); 10/2000, foot drag - left side; 10/2000, falling; 1/2001, peculiar gait; 1/2002, spasticity;

Date of Treatment or Aids you use: 1/2001, cane; 5/2002, walker; 10/2002, motorized wheelchair

What bothers you the most in regards to lost functions or abilities? Loss of independence, inability to work, loss of active lifestyle.  Changing son's college plans

Are you participating in the NWU or NIH study? No

Any family (living or deceased) with a similar neurological disease?  Yes, a cousin passed 2 yrs. ago with ALS

Is there anything you attribute to your onset of PLS?  Yes, stress - I was a RN for 17 yrs.

Family, household, and hobbies info:  I am a divorced mother of one son and have lived in the Atlanta area for about 15 years prior to relocating back to New Orleans.  I am a registered nurse who specialized in Maternal-Child Health.  I was an avid tennis player who also played softball and football with friends and my son.  I have always been a reader.  I used to entertain frequently by throwing casual dinner parties for friends and family.

Employment info:  I am a registered nurse who most recently worked in a Labor and Delivery unit until 1/2002 when I could no longer keep up with the physical demands of the job.  I went back into management for 6 months until my son graduated high school and I relocated back to New Orleans to live with family.  I received my motorized wheelchair in 10/2002 but couldn't return to work since I required assistance with dressing, food preparation and I was no longer driving.  I began receiving disability benefits 12/2002.

Household chores, daily living info:  I currently live with family members who assist me with daily care and prepare my meals for me.  I no longer drive but I have purchased a wheelchair accessible van that allows me to leave home.

What new activities or interests have opened up to you?  I still enjoy reading and am never without a book.  I have spent a lot more time with my nieces and nephews since returning to New Orleans.  I have been tutoring one niece in mathematics and have taught phonics, reading and early math skills to two other nieces prior to them beginning grammar school.  I spend a lot more time on the computer now.  About 2 times a year I meet with friends and co-workers from Atlanta for a couple of days on the gulf coast.

Additional Comments? In retrospect, it seems as though my disease progressed much more rapidly while I was working and attempting to maintain an independent lifestyle.  I have noticed an increase in spasticity when excited or upset.

Address:  New Orleans, La.           Share my data: Yes

Stevenson, Mata     Gender:  Female    Date of Birth:  12/07/1945

Diagnosis:  PLS suspected in 10/2002 by Patrick Stuebgen

Has your diagnosis been confirmed by a 2nd neurologist or clinic?  No

Were you misdiagnosed prior to PLS dx?  No

How long did it take you to get a diagnosis?  1 month (my doctor and I first thought my foot drag might be orthopedic-related and had that investigated with no diagnosis in late 2001.  When my arm responsiveness slowed in April 2002 I started to think this was neurological but didn't investigate until my doctor's appointment in August.  He suspected MND and referred me to a neurologist who tested me and diagnosed PLS.  I saw Dr. Siddique in October, 2003, and he thought it might be PLS, just needed more time to be sure)

Symptoms:  1996, foot drag left side with slight tendency to stumble; 2000, foot drag left side more regular; 2001, peculiar gait left side; 04/2002, arm/hand left side; 2004, spasms in left hand when straining to walk (stairs, against wind)

Treatment or Aids you use: 12/2003 AFO, but almost never use it; 10/2003, Co-enzyme Q-10--50mg/3xday 10/2003 Vitamin E mixed tocopheryls--1000 IU; 10/2003, Vitamin C, E and calcium

What bothers you the most in regards to lost functions or abilities?  Tripping, walking awkwardly & having to concentrate so much on walking

Are you participating in the NWU study?  Yes, my brother and I have participated

Are you participating in NIH studies?  No, I had polio in the past and understand that that might interfere with the results

Any family (living or deceased) with a similar neurological disease?  No

Is there anything you attribute to your onset of PLS?  Yes, pesticides in fields I worked in as a child.  Polio?

Family, household, hobbies info:  Helpful, understanding husband, no kids.  A small apartment is easy to negotiate and keep clean.  Love to travel still.  Used to do ballroom dancing but lack of arm responsiveness diminishes both look and feel.

Employment info:  I work as a reference librarian at a college of design.  My typing is weak on the left, so I type most short things with one hand on a regular keyboard.  I walk back and forth and from floor to floor, often lurching or stumbling, but I don't care too much what this looks like and the students and staff doesn't seem to either.

Household chores, daily living info:  I still do most of the things I always have, except I avoid carrying things, since that affects my balance.  Haven't been to the grocery store in ages.  I shop online and my husband picks up the rest.  Pulling clothes off over my head is laborious, but I always know they will come off eventually!

What new activities or interests have opened up to you?  Since I'm not particularly disabled at this point, my interests and lifestyle haven't changed much.

Additional Comments:  I've learned to be more patient with myself (and others).  Slow (and deliberate) doesn't mean it's not going to happen.  Getting nervous and trying to force it (walking, undressing...) won't help.  I WILL get home--just have to keep plugging along.

Address:  New York, N.Y.                     Share my data: Yes

Stewart, Brenda     Gender:  Female       Date of Birth:  02/29/52

Diagnosis:  PLS confirmed 10/12/2004 at the neuromuscular clinic in charlotte, NC

Has your diagnosis been confirmed by a 2nd neurologist or clinic?  No

Were you misdiagnosed prior to PLS diagnosis?  Yes, ALS, MMN and etc (possible)

How long did it take you to get a diagnosis?  3 years

Symptoms:  06/1999, fatigue and peculiar feeling of feet not touching ground; 07/2000, foot drag on left side and pain in right hip; 09/2000, fatigue and began to have trouble walking; 12/2000, foot drag on left side and needed cane for walking; 08/2003, peculiar gait on both sides and needed rollator for walking and afos for both legs; 03/2004, gave up trying to walk...in wheelchair; 03/2001, fascics began, all over weakness at times, numbness and tingling in limbs, extreme fatigue, inability to crawl or turn over in bed.

Treatment or Aids you use:  06/2003, chemo rx with cytoxin followed by Ivig; 06/2002, effexor

What bothers you the most in regards to lost functions or abilities?  Being unable to do things for myself and with my grandchildren.  Can no longer drive

Are you participating in the NWU or NIH study?  No

Any family (living or deceased) with a similar neurological disease?  Yes, MS
Is there anything you attribute to your onset of PLS?  No, luck of the draw or lack thereof

Family, household and hobbies info:  Married to wonderful guy, 3 great children, (30, 26 and 18) 3 granddaughters.  Most beautiful kids in the world.  Love to read, garden and crafts.  Can no longer garden.  I really miss it.  Was always active.

Employment info:  Used to do bookkeeping.  Then worked with handicapped college students.  No longer work.  Applied for SSDI in 2002.

Household chores, daily living info:  I can no longer drive.  I have someone come in once a week to help with housework.  I do light housework and most of the cooking.  I am still able to do my own personal care albeit more slowly.  My husband and family are very supportive and do most of what I am unable to accomplish.

What new activities or interests have opened up to you?  "Play" on the computer more

Additional Comments?  I pray that in our lifetime there will be an answer for the cause of this disease as well as a cure.  None of this makes sense to me.

Address:  Laurinburg, N.C.                        Share my data: Yes

Email Address:  biffles52@hotmail.com     Submitted: 10/22/2004

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Taniwa, Jo-Anne           Gender: Female     Date of Birth:  Dec 06, 1942

Diagnosis: PLS confirmed May 2002 by Dr. Gray,-St. Michael's Hospital-MS Clinic

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Taylor, Ty      Gender: Male     Date of Birth:  Jun 01, 1950

Diagnosis:  PLS confirmed Sept 2001, Emory

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Thompson, Julie         Gender:  Female     Date of Birth: Mar 02, 1954

Diagnosis:  PLS confirmed Jun 2003 by Richard Taylor, MD, neurologist

Has your dx been confirmed by a second neurologist/clinic?  Yes

Where you misdiagnosed prior to getting a PLS dx?  Yes, depression, possible HSP

How long did it take you to get a diagnosis?  Nine years

Symptoms: Mar 1994, fatigue, also muscle spasms and jumpy legs; Dec 1996, peculiar gait, right side, full neuro work up; Apr 1996, Arm/hand, Both, difficulty writing, unable to walk

Other Symptoms:  1980 TMJ muscle spasms noted when cold or nervous; 1977, ankle clonus noted when cold or nervous

Treatment or Aids you use:  1996 Effexor, Baclofen; 1997 Wellbutrin

Are you participating in the NWU or NIH study? Yes

Do you have any blood relatives (living or deceased) with a similar neurological disease?  No

Is there anything you attribute to your onset of PLS?  No

Submitted:  3/2004

Thomson, Jennifer       Gender:  Female     Date of Birth:  Oct 22, 1953
Diagnosis:  PLS confirmed Mar, 2000 by Dr. Carmel Armon, Loma Linda University, Ca.

How long did it take for you to get a diagnosis?  Four years

Has you diagnosis been confirmed by a 2nd neurologist? Yes

Were you misdiagnosed prior to the PLS dx? Yes, Conversion Disorder (all in my head)

Symptoms:  Feb 1994, foot drag, right side (only when tired); May, 1995, foot drag, right side (became constant); May, 1995, arm/hand, right side, only when tired; May, 1995, fatigue -intermittent at first; August 1999, speech started as hoarseness, now slurred); August 1999, foot drag, both sides, constant; August 1999, arm/hand, both sides with repeated activity

Other symptoms: Feb 2000, mild fasciculations

Treatments or Aids used: 1999, cane as needed; 2000, 4 wheel walker for distances; 2000, AFO's for each leg, for distances; 2000, Baclofen pump implant, improved mobility and speech; June 2002, power wheelchair for any distances and some days I use it around the house to conserve energy; 2002, Neurontin, Celexa

What bothers you the most in regards to functions or abilities you have lost?  Giving up things like hiking and golfing.  I like being active.

T J                   Gender:  Male      Date of Birth:  May 03, 1931

Diagnosis:  PLS confirmed in June 1995, by Dr R, McMicheal-Arlington Clinic

Has your dx been confirmed by a second neurologist/clinic?  Yes

Were you misdiagnosed prior to getting a PLS dx?  No

How long did it take you to get a diagnosis?  Sixteen years

First Symptom: 06/1984, peculiar gait, walked like a drunk; 09/1984, spasticity; 03/1987, lost my balance and started using a cane; 04/1995, falling some; 06/1999, very slow walking and had to use four wheel walker

Treatment or Aids you use:  1999, Use walker in the house and use scooter outside, Take Rilutek and lots of vitamins

What bothers you the most in regards to functions or abilities you have lost?: I used to be very active but, cannot do lots of things I like to do.

Are you participating in the NWU or the NIH study?  No

Do you have any blood relatives ,living or deceased, with a similar neurological disease? No
Is there anything you attribute to your onset of PLS?  No, using chemicals at work?

Family, household and hobbies info:  Reading and anything mechanical.

Employment info:  I retired from American Airlines in 1987.  No, I haven't applied for SSDI.  My office was upstairs and I had to go up and down at least a dozen times a day.

Household chores, daily living info:  I feel very blessed for I am just affected in my lower extremities. I do a lot of the housework for my wife and can do a lot of things.

Address:  Arlington, Texas, U.S.A.
Email Address:  JRT53@AOL.COM     Share my data:  Yes

Ventre Virginia           Gender:  Female     Date of Birth:  Nov 09, 1946

Diagnosis:  PLS confirmed Jul 1999 by Robert Kurtzke and Richard Johnson

Has your dx been confirmed by a second neurologist/clinic?  Yes

Where you misdiagnosed prior to getting a PLS dx?  No

How long did it take you to get a diagnosis?  3.5 years

Symptoms:  1993 my left leg got stiff after walking; 1995 falling; 1996 foot drag; 2000 arm/hand; 2001 Speech; 1996 startle reflex and uncontrollable laughing and crying

Treatment or Aids you use:  1994 cane; 2000 walker

What bothers you the most in regards to functions or abilities you have lost?  unable to speak clearly

Are you participating in the NWU study?  Yes

Are you participating in the NIH study?  No

Do you have any blood relatives (living or deceased) with a similar neurological disease? No
Is there anything you attribute to your onset of PLS?  No

Employment info:  Prior to developing PLS, I retired from my federal government job in 1993 and started a secretarial service.  I am now unable to do secretarial work because of my poor voice and weak fingers.  I applied for and receive SSDI.

Household chores, daily living info:  My husband helps me with most of the things I can no longer do, and I have a maid service.  I drive short distances only - just a few miles from home

What new activities or interests have opened up to you because of your disabilities?  Meditation

Address:  Oakton, Va.                      Share my data: