Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Belinda, I don't know where you live in relationship to Toledo, but Moira, who has HSP and has children, is coordinating a TeamWalk Connection in Toledo on September 9th. It almost sounds too coincidental that your PLS developed following the birth of your first child. Many PLSers believe that something in their life triggered their PLS. Many of us are older than you and don't have small children. We do have a few on the List who are young mothers so I'm sure they will reply. I'd encourage you to post to the HSP List and even though they don't have the PLS challenges of speech and some of your other challenges, many of them do have small children and they do have other challenges. I could forward your message to the HSP Discussion List if you'd prefer not to join their group but they have a lot more discussion about children. If you want to register on that List see this link. Several of us belong to both groups so we get all the information we can. _http://www.sp-foundation.org/list.htm_ (http://www.sp-foundation.org/list.htm) I'm sorry to learn of your rapid progression and it has to be extremely difficult with such young children. Many of us do share your symptoms and I can assure you that you are not alone. Please try and meet others who are experiencing the same. You can also benefit by going to this database and seeing if someone lives near you. _http://www.geocities.com/freyerse/plsdb.html_ (http://www.geocities.com/freyerse/plsdb.html) G. In a message dated 7/11/2006 8:29:09 A.M. Pacific Standard Time, Belle2use@... writes: I am new to the groups here. I am 32 years old with 2 boys (3 and 10 months) I was diagnosed with PLS 18 months ago. I would like to know what everyone's symptoms/stories are. I started to have symptoms 3 weeks after I gave birth to my first son. Now I have unintelligble speech, tongue fasiculations (left side). My left hand has spasmed closed. I have cramping in my left shoulder. Now my feet are weakened causing me to lose balance quite often. I have problems with excessive saliva. Please share your " problems " with me so I dont feel so alone! Thanks Belinda Poole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hello Belinda, I've had PLS since 1991 starting with voice problems. It was diagnosed as Spasmodic Dysphonia and I take botox treatments for it. The voice is strangled sounding. Then 4 years later I fell and broke my wrist and during physical therapy my left leg started to stiffen up but then went a way, I just attributed it to nerves and the pain involved with doing the exercises. The stiffening began again after that and I would trip and not be able to catch myself. I felt like I was falling backwards. My fingers would twitch and my calves had a tingling and I could see the skin jump involuntarily. I do have cramping occasionally but they gave me a muscle relaxer called zanaflex which helps. I was sent to a neurologist and he gave me the PLS dx after lengthy testing.............I was 45 when it all started. Flora Brand St sburg,FL. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Belinda I am 51 years old now but i beleive my symptoms started in my late 30s and was finally dxed in 1998. mine started off off as unexplained hurting legs.Then eventually the the feet spazams and heavy legs started followed by spazams in left leg to left foot foo then the same happened to right leg and foot . Then like you my left shoulder and arm became involved .I also have the saliva problems at times..as well as feeling a tightness in my throat most all the time ..My sleeping is completey off whack some nite itts 2 to to 4 hours and other times i can sleep for 2 days ....thats most it Jerry Belinda in Ohio I am new to the groups here. I am 32 years old with 2 boys (3 and 10 months) I was diagnosed with PLS 18 months ago. I would like to know what everyone's symptoms/stories are. I started to have symptoms 3 weeks after I gave birth to my first son. Now I have unintelligble speech, tongue fasiculations (left side). My left hand has spasmed closed. I have cramping in my left shoulder. Now my feet are weakened causing me to lose balance quite often. I have problems with excessive saliva. Please share your " problems " with me so I dont feel so alone! Thanks Belinda Poole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 hey belinda, my name is sarah and i just turned 39 a couple of wks ago. i have 2 children also: an 8 yr old girl and a 3 yr old boy. my symptoms started a little more than 2 years ago. first noticed strange sensations on my left side, then i started dragging my foot while running (i raced all distances and loved the marathon) and through it all i was exhausted. then severe stiffness in my legs, dragging feet, and speech started to slur. also, during this time, i had rheumatic fever and was in the hospital for a month. now my speech is moderate to severely dysarthric, i wear AFO braces and use walker and electric chair to get around. also having weakness and cramps/spasms in my hands. so, like yours, an atypical case of PLS but we're hoping it stays there. i very much empathize w/your feelings of " aloooneness " ; and, i don't know about you, but i find the speech one of the tougher things to deal with. adds to the isolation. BUT the good news is you are not alone. there is a whole community of us struggling w/this, looking for answers, understanding, sympathy and finding those things here. it is still tough though, especially w/little kids (mine like to swing on my walker--not good while trying to walk!!--and grab rides w/me on the chair). we're still trying to figure out that one;-) are you able to get help caring foor your children? sarah sarah > > I am new to the groups here. I am 32 years old with 2 boys (3 and 10 > months) I was diagnosed with PLS 18 months ago. > > I would like to know what everyone's symptoms/stories are. I started > to have symptoms 3 weeks after I gave birth to my first son. Now I > have unintelligble speech, tongue fasiculations (left side). My left > hand has spasmed closed. I have cramping in my left shoulder. Now my > feet are weakened causing me to lose balance quite often. > > I have problems with excessive saliva. > > Please share your " problems " with me so I dont feel so alone! > > Thanks > Belinda Poole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 hey belinda, my name is sarah and i just turned 39 a couple of wks ago. i have 2 children also: an 8 yr old girl and a 3 yr old boy. my symptoms started a little more than 2 years ago. first noticed strange sensations on my left side, then i started dragging my foot while running (i raced all distances and loved the marathon) and through it all i was exhausted. then severe stiffness in my legs, dragging feet, and speech started to slur. also, during this time, i had rheumatic fever and was in the hospital for a month. now my speech is moderate to severely dysarthric, i wear AFO braces and use walker and electric chair to get around. also having weakness and cramps/spasms in my hands. so, like yours, an atypical case of PLS but we're hoping it stays there. i very much empathize w/your feelings of " aloooneness " ; and, i don't know about you, but i find the speech one of the tougher things to deal with. adds to the isolation. BUT the good news is you are not alone. there is a whole community of us struggling w/this, looking for answers, understanding, sympathy and finding those things here. it is still tough though, especially w/little kids (mine like to swing on my walker--not good while trying to walk!!--and grab rides w/me on the chair). we're still trying to figure out that one;-) are you able to get help caring foor your children? sarah sarah > > I am new to the groups here. I am 32 years old with 2 boys (3 and 10 > months) I was diagnosed with PLS 18 months ago. > > I would like to know what everyone's symptoms/stories are. I started > to have symptoms 3 weeks after I gave birth to my first son. Now I > have unintelligble speech, tongue fasiculations (left side). My left > hand has spasmed closed. I have cramping in my left shoulder. Now my > feet are weakened causing me to lose balance quite often. > > I have problems with excessive saliva. > > Please share your " problems " with me so I dont feel so alone! > > Thanks > Belinda Poole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 hey belinda, my name is sarah and i just turned 39 a couple of wks ago. i have 2 children also: an 8 yr old girl and a 3 yr old boy. my symptoms started a little more than 2 years ago. first noticed strange sensations on my left side, then i started dragging my foot while running (i raced all distances and loved the marathon) and through it all i was exhausted. then severe stiffness in my legs, dragging feet, and speech started to slur. also, during this time, i had rheumatic fever and was in the hospital for a month. now my speech is moderate to severely dysarthric, i wear AFO braces and use walker and electric chair to get around. also having weakness and cramps/spasms in my hands. so, like yours, an atypical case of PLS but we're hoping it stays there. i very much empathize w/your feelings of " aloooneness " ; and, i don't know about you, but i find the speech one of the tougher things to deal with. adds to the isolation. BUT the good news is you are not alone. there is a whole community of us struggling w/this, looking for answers, understanding, sympathy and finding those things here. it is still tough though, especially w/little kids (mine like to swing on my walker--not good while trying to walk!!--and grab rides w/me on the chair). we're still trying to figure out that one;-) are you able to get help caring foor your children? sarah sarah > > I am new to the groups here. I am 32 years old with 2 boys (3 and 10 > months) I was diagnosed with PLS 18 months ago. > > I would like to know what everyone's symptoms/stories are. I started > to have symptoms 3 weeks after I gave birth to my first son. Now I > have unintelligble speech, tongue fasiculations (left side). My left > hand has spasmed closed. I have cramping in my left shoulder. Now my > feet are weakened causing me to lose balance quite often. > > I have problems with excessive saliva. > > Please share your " problems " with me so I dont feel so alone! > > Thanks > Belinda Poole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Eva: Actually Dr Piorio at Cleveland Clinic was the firat neurologist I saw. He was a very kind, sweet Doctor. At that time I only had minimal symptoms and he was unable to determine a Diagnosis other than motor neuron dysfunction. At that point I had begun my internet research. My symptoms started to worsen so I decided to go to a Neuro in Pittsburgh. He contacted Piorio and they reviewed my case over the phone. Zivkovic (pgh) redid the emg, and it showed several significant changes from the one IN had in Cleveland thus resulting in the PLS diagnosis. Now they are pursuing possibilites of hormones affecting the PLS... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Eva: Actually Dr Piorio at Cleveland Clinic was the firat neurologist I saw. He was a very kind, sweet Doctor. At that time I only had minimal symptoms and he was unable to determine a Diagnosis other than motor neuron dysfunction. At that point I had begun my internet research. My symptoms started to worsen so I decided to go to a Neuro in Pittsburgh. He contacted Piorio and they reviewed my case over the phone. Zivkovic (pgh) redid the emg, and it showed several significant changes from the one IN had in Cleveland thus resulting in the PLS diagnosis. Now they are pursuing possibilites of hormones affecting the PLS... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Eva: Actually Dr Piorio at Cleveland Clinic was the firat neurologist I saw. He was a very kind, sweet Doctor. At that time I only had minimal symptoms and he was unable to determine a Diagnosis other than motor neuron dysfunction. At that point I had begun my internet research. My symptoms started to worsen so I decided to go to a Neuro in Pittsburgh. He contacted Piorio and they reviewed my case over the phone. Zivkovic (pgh) redid the emg, and it showed several significant changes from the one IN had in Cleveland thus resulting in the PLS diagnosis. Now they are pursuing possibilites of hormones affecting the PLS... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 In a message dated 7/11/2006 9:01:12 P.M. Pacific Standard Time, Belle2use@... writes: Now they are pursuing possibilites of hormones affecting the PLS... Can you tell me who " they " are? That's an interesting thought. G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Belinda, Sorry about your PLS diagnosis. I am fairly new here too and was diagnosed 15 months ago at age 50, but my symptoms began over 3 years ago with a left leg limp and stiffness that gradually spread to my right leg. My speech is slowed and hoarse. My latest symptoms are upper arm and neck weakness and unrelenting fatigue. I am always tired. Small children are challenging and rewarding; I hope you have a good support system. Most of us are struck by this disease later in life with our children grown. My heart goes out to you and I will keep you in my prayers. It is a very strange disease that affects everyone differently. It is hard to find others who actually understand what you are going through. That is why you will find this group a valuable support and resource. Because you are so young, there is much to be hopeful for. I believe they will find effective treatments in your lifetime. There is much more interest and research in ALS and we should reap any benefits from breakthroughs discovered for that disease. Try to stay strong for your babies. They do not see someone with PLS; they only see their Mommy that they love. Jen M. bellepoole wrote: > I am new to the groups here. I am 32 years old with 2 boys (3 and 10 > months) I was diagnosed with PLS 18 months ago. > > I would like to know what everyone's symptoms/stories are. I started > to have symptoms 3 weeks after I gave birth to my first son. Now I > have unintelligble speech, tongue fasiculations (left side). My left > hand has spasmed closed. I have cramping in my left shoulder. Now my > feet are weakened causing me to lose balance quite often. > > I have problems with excessive saliva. > > Please share your " problems " with me so I dont feel so alone! > > Thanks > Belinda Poole > > > >------------------------------------------------------------------------ > >No virus found in this incoming message. >Checked by AVG Free Edition. >Version: 7.1.394 / Virus Database: 268.9.10/385 - Release Date: 7/11/2006 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Belinda I'm Eva 52 yo. First symptoms registering in the realm of motor neurons in '99 after threats of poisoning. I started out with speech and swallowing problems, DXed as ALS and told I had 6-12 months to live. I was a single Mom of two at home at the time. Once I went on long term disability 2 years later my speech and swallowing drastically improved. Notice how I just skipped right over those two years of agony, trying to work, raise 2 kids, and preparing to die... not easy. For 3 years I only had slurred speech and an employer who opted to pay my salary to keep me home than reassign me. Ah the good old days. One in college and one summering with Dad. I did ALL So, California beaches, cruises, Jamacia, Nassau, Outer Banks of NC, and half the Florida's beaches. DX changed to 'possible ALS' at my very favorite tertiery care hospital Cleveland Clinic and wonderful Dr. Pioro. In 2004 from April on I went from left limp, to cane to rolling walker within 6 months. While I was still all upper motor neuron activity only. I certainly didn't like the rate of progression. My youngest graduated HS meaning I lost the extra money for the house so I sold the house and moved from West Virginia to Florida solo. I got here in 2005 which was also the end of the 6 yr waiting period after which bulbar onset possible ALS without lower motor neuron activity can be called PLS. Now finally I could get an intrathecal baclofen pump implanted, improve my mobility, and get on with life. NOT Nine day csf leak during the pump procedure unknowingly sent Epstein barr virus which had been growing in dormancy in my cerebellum since '72 and maybe since birth into every cavity and organ. No one could figure out why I appeared to be dying. While working my way up to neuro #23, I remembered the research done on me in '72 and figured out I had Epstein barr (mono) cerebellitis. Took 2 more weeks to convince one of the many docs to believe me. So on anti-virals and prednisone I went to Mayo Clinic ville where a team of 4 specialists are trying to figure out what organ isn't infected with the virus. Right now my DX is symptomatic PLS (meaning they think the virus is causing the PLS). Info you need from me. The virus prefers to attack the left -side. I had left-side heaviness after my son was born. Three docs couldn't figure it out so I quit work and it vanished within 7 months (virus went into dormancy again). Yes I had fasiculations in '99 but they went away when I got off all SSRIs (anti-depressants like Effexor, Zoloft, Prozac etc...) If you see similarities call Dr. Pioro who is actively in communication with Dr. Boylan at Mayo Clinic on my case. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Belinda I'm Eva 52 yo. First symptoms registering in the realm of motor neurons in '99 after threats of poisoning. I started out with speech and swallowing problems, DXed as ALS and told I had 6-12 months to live. I was a single Mom of two at home at the time. Once I went on long term disability 2 years later my speech and swallowing drastically improved. Notice how I just skipped right over those two years of agony, trying to work, raise 2 kids, and preparing to die... not easy. For 3 years I only had slurred speech and an employer who opted to pay my salary to keep me home than reassign me. Ah the good old days. One in college and one summering with Dad. I did ALL So, California beaches, cruises, Jamacia, Nassau, Outer Banks of NC, and half the Florida's beaches. DX changed to 'possible ALS' at my very favorite tertiery care hospital Cleveland Clinic and wonderful Dr. Pioro. In 2004 from April on I went from left limp, to cane to rolling walker within 6 months. While I was still all upper motor neuron activity only. I certainly didn't like the rate of progression. My youngest graduated HS meaning I lost the extra money for the house so I sold the house and moved from West Virginia to Florida solo. I got here in 2005 which was also the end of the 6 yr waiting period after which bulbar onset possible ALS without lower motor neuron activity can be called PLS. Now finally I could get an intrathecal baclofen pump implanted, improve my mobility, and get on with life. NOT Nine day csf leak during the pump procedure unknowingly sent Epstein barr virus which had been growing in dormancy in my cerebellum since '72 and maybe since birth into every cavity and organ. No one could figure out why I appeared to be dying. While working my way up to neuro #23, I remembered the research done on me in '72 and figured out I had Epstein barr (mono) cerebellitis. Took 2 more weeks to convince one of the many docs to believe me. So on anti-virals and prednisone I went to Mayo Clinic ville where a team of 4 specialists are trying to figure out what organ isn't infected with the virus. Right now my DX is symptomatic PLS (meaning they think the virus is causing the PLS). Info you need from me. The virus prefers to attack the left -side. I had left-side heaviness after my son was born. Three docs couldn't figure it out so I quit work and it vanished within 7 months (virus went into dormancy again). Yes I had fasiculations in '99 but they went away when I got off all SSRIs (anti-depressants like Effexor, Zoloft, Prozac etc...) If you see similarities call Dr. Pioro who is actively in communication with Dr. Boylan at Mayo Clinic on my case. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Belinda I'm Eva 52 yo. First symptoms registering in the realm of motor neurons in '99 after threats of poisoning. I started out with speech and swallowing problems, DXed as ALS and told I had 6-12 months to live. I was a single Mom of two at home at the time. Once I went on long term disability 2 years later my speech and swallowing drastically improved. Notice how I just skipped right over those two years of agony, trying to work, raise 2 kids, and preparing to die... not easy. For 3 years I only had slurred speech and an employer who opted to pay my salary to keep me home than reassign me. Ah the good old days. One in college and one summering with Dad. I did ALL So, California beaches, cruises, Jamacia, Nassau, Outer Banks of NC, and half the Florida's beaches. DX changed to 'possible ALS' at my very favorite tertiery care hospital Cleveland Clinic and wonderful Dr. Pioro. In 2004 from April on I went from left limp, to cane to rolling walker within 6 months. While I was still all upper motor neuron activity only. I certainly didn't like the rate of progression. My youngest graduated HS meaning I lost the extra money for the house so I sold the house and moved from West Virginia to Florida solo. I got here in 2005 which was also the end of the 6 yr waiting period after which bulbar onset possible ALS without lower motor neuron activity can be called PLS. Now finally I could get an intrathecal baclofen pump implanted, improve my mobility, and get on with life. NOT Nine day csf leak during the pump procedure unknowingly sent Epstein barr virus which had been growing in dormancy in my cerebellum since '72 and maybe since birth into every cavity and organ. No one could figure out why I appeared to be dying. While working my way up to neuro #23, I remembered the research done on me in '72 and figured out I had Epstein barr (mono) cerebellitis. Took 2 more weeks to convince one of the many docs to believe me. So on anti-virals and prednisone I went to Mayo Clinic ville where a team of 4 specialists are trying to figure out what organ isn't infected with the virus. Right now my DX is symptomatic PLS (meaning they think the virus is causing the PLS). Info you need from me. The virus prefers to attack the left -side. I had left-side heaviness after my son was born. Three docs couldn't figure it out so I quit work and it vanished within 7 months (virus went into dormancy again). Yes I had fasiculations in '99 but they went away when I got off all SSRIs (anti-depressants like Effexor, Zoloft, Prozac etc...) If you see similarities call Dr. Pioro who is actively in communication with Dr. Boylan at Mayo Clinic on my case. Eva Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.