new and very scared

[gypsyrose]

Hello everyone;
I would like to introduce myself. I'm a 40 year old women and a mother of two beautiful daughters. I was just diagnosed with an MND last week. So far it is showing as all upper motor neuron. I have the spasticity, hyperreflexes, clonus, babinski's sign. No atrophy or fasics.

MS has been ruled out. Both MRI's are normal. Spinal tap was normal. All blood work is normal/negative. We have managed to rule out almost everything and now my neurologist is talking about PLS. I have an appointment with her this friday to schedule an EMG. Needless to say I am scared to death. I am trying to find as much information as I can, without scaring myself even more. I Have so many questions.

Any advice, support, references, are very much appreciated.

 

[Geo]

Hello Very scared . Well welcome to hell ,the reason i say that is it is real hell not knowing and most of us have been there for a while . After a while your docs. wont want you around ,because they cant help you other than give you some muscle relaxers ,But stick in here, lots of us have some helpful hints and theres lots of Good Support here . When i first got this i read alot about this Disease and was told Mostly People after age 50 ,now im seeing you young guys on here and really begining to wander .Im convinced its something we all were exposed to.Possibly a Virus ,because they cant see a Virus on an MRI and they have no help for that anyway so might as well be in outer space . They will watch you for 5 years to see if it turns into ALS ,But you sound alot like i did . I should be a healthy person according to test results . Mine started Bulbar (speech and then swallowing ) then the legs .I would suggest reading any posts i have for any help i have to offer .Olly is from the UK and has done alot of research . Hope you'll like it here and hope we can make you feel better about not feeling alone . Geo

 

[olly]

hi gypsyrose

:-Dwelcome to the forum.
i am also 40yrs/f, i became ill 8yrs ago . if you have a good doc/neuro thats half your battle sorted. a diagnosed of pls can take a few yrs, i know somethats gone 8-12 yrs before diagnosed.
there is lots of info in the posts, geo is very informative, so you are in the right place and in good hands for help and support, just ask.
as geo said i too have noticed pls'ers are all around the 40mark at diagnosed, wonder if its a pre midlife/menapausal thing going on lol:-D
take care
caroline

 

[anthony]

Good Evening
I don't know much as my dad was just diagnosed but i do know that he drinks 16 onces of tonic water everyday and it took away his check spasms..

 

[xina]

i am new to all of this, too. i have the same symptoms you do. i was misdiagnosed with MS despite negative MRIs and lumbar puncture. i am glad to have found a neurologist i like and trust. i am 36 years old - this all started last year when i was 35. i am single and lost my independent life and now live at home with my mom while i try to adjust. the SPF Foundation http://www.sp-foundation.org/pls.htm is a great source of information. remember that everyone's experience with PLS is unique. there may be similarities -but just because something happened to one person does not mean it will happen to you.

i went through a long period of I DON'T WANT THIS I DON'T WANT THIS I DON'T WANT THIS and now i'm working on accepting I HAVE THIS. some days are easier than others. i try to take each day as it comes because if i think too far into the future i get worked up and worried and scared.

take care of yourself.
christina
diagnosed 1/08

 

[Gracie]

Hello Gypsyrose,
I read your message and believe me you are not alone. My husband has the exact same symptoms and we have been going through this for nearly 2 yrs with the PLS diagnosed one year ago. It is really pityful to say the least. We even went to UPMC in Pittsburg for our second opinion with what we believe to be an extremely qualified professor and research doctor on ALS/PLS and they all have the same pityful answer (wait and see). My husband has been poked to death with every test there is and we keep hoping someday we will get the cure and have all our questions answered in his lifetime. My husband is 61 years old and in extremly good health except he can't walk very well and his balance is terrible. Well enough of this, just know you are not alone and none of us know anything for sure about this condition. Take care!

Gracie

 

[Geo]

Focus on what you can do ,stay busy doing things ,No Idle time , dont try to over think the problem . The answers are not going to come over night . If your not able to get outside ,do some Puzzles ,play some games , clean the bathrooms ,rearrange your sock Drawer LOL . Geo

 

[sral]

gymrose,

You may want to have them check your thyroids. There was an individual about your age with the same symptoms and initially they were thinking ALS, but it turned out to be thyroid cancer instead. This is very time sensitive so it's important that it be checked as soon as possible. They can do an xray. It will not be detectable through blood work.

All the best

 

[larryz]

I am also new to the forum. I was diagnosed over a year ago after having symptoms for 10+ years with many misdiagnoses. My symtoms started in the legs and have progressed very slowly. I have constant drawing in my legs--somewhat releived by baclofen. My left arm has now begun to show weakness. Onset began at 50. I'm having trouble walking any great distance without resting. Anyway, while it is a blessing to finally know what the hell is wrong with me, I'd like to find out where the leading research and treatment hospitals are located. any assistance?--larryz in Albany NY

 

[Al]

Hi larryz. Welcome but sorry you have to be here. If you check out www.alsa.org they have a list of ALS Centers. We have some other New Yorkers here that may have advice. If I recall there is one up in Rochester.
AL.

 

[larryz]

thanks Grampal-- I'm not sure what you mean by "you have to be here". Could you explain?--I'll check out the web site you suggested-larryz

 

[Al]

What I meant was sorry you had to be looking for a site like this rather than be looking for a site with the best beaches to vacation on.
AL.