Has anyone else noticed....

[Maddy]

D Bowman
I am new to this site and posted yesterday. I admit it was very long and hard to follow. If I had only read your thread first I would have saved myself alot of typing. Yes to every point you made...it is uncanny! Do you have PLS? if yes, when were you diagnosed? Mine started with bulbar onset around summer '06 and I experience everything you do.

 

[Maddy]

Hi
I should have read on thru the thread-I am just learning.
I have been diagnosed with PLS also but fear ALS because of the tremor that you describe. I call it a Parkinson tremor in my left arm. I jump when I have an itch in my leg or a tickle, my leg will kind of "jerk".
I remember crying uncontrollably at a funeral a year ago (normally I am the one not crying and going home with such a headache from holding it in) and thinking how odd it was. I mean I liked the person but not enough to cry through the whole funeral! Very embarrassing!
Maddy

 

[Zaphoon]

Emotional Liability

Well, I only get perturbed and say words I don't usually say and haven't said in a great, long while. Little, silly four letter words. Not the real bugger ones... This is so unlike me that I'd like to count this in as my "emotional liability".

Almost turret like but its never in front of people.

No laughing or crying. This doesn't happen in every case, though, right?

Zaphoon

 

[BethU]

Hi, DBowman ...

I am in a clinical trial for an emotional lability drug (Zenvia). They are testing only various dosages in this trial ... they already know it works for the emotional stuff. It has been a godsend for me. I was bursting into tears at Kinko's or grocery stores when anybody was nice to me. Sooooooooooo embarrasing.

I have also had a complete change of diet, because I cannot stand to eat most foods. Right now, it is enhanced milkshakes and toast. For a couple months it was potato salad and lemon yogurt (I don't even like potato salad ... but it was all I could stand to eat for some reason).

Yes to the sneezing (and yawning), and jumping 5 feet in the air at sudden noises. No to the rest.

 

[hopingforcure]

Maddy,
many people with UMN problems can have tremor feelings, spasms, and yes even twitching, although they do not show up on the emg as malignant. I think your problems sound textbook UMN.. and that would lead to PLS diagnosed. Your balance is a sure umn symptom, the psdeu-bulbar palsy, emotional liablility, brisk reflexes( must have them to have clonus). Welcome to the board, glad you have joined us..

 

[Maddy]

hopingforacure
thank you! You just made my day, really. I am normally pretty convinced it is PLS, but every so often I worry that it has become ALS. I guess because bulbar onset PLS has a chance of becoming ALS and I only received my diagnosed in June '07. My internist really believes it is PLS and I could be the poster girl for it!
Thank you again!
Maddy

 

[hopingforcure]

Glad to be of service anytime.. PM me whenever. The upper motor neuron pseudo-bulbar symptoms can be so disturbing. Do not fret bulbar and limb onset pls neither have a better chance of turning into ALS. UMN symptoms can be anywhere in the body.. As you know they are all the things you have. ALS of course has LMN symptoms that would have shown on the EMG. I know you worry, but do not let, many pls'ers stay pls'ers and you are likely going to be one of them. Also remember this if you ever did turn to als, most people who change seem to be UMN dominant ALS, and this is usually a slower moving case. I just feel good a cure is in the near future for all of us here.

 

[Maddy]

I love your positive attitude. A friend of mine just had a baby and offered me her stem cells! I thought it was a lovely offer but don't know what I would do with them. Hopefully, one day soon I will be able to take her up on the offer.
I am going down to Fla Nov 10 for a week of biofeedback at the Brucker Center at Miami Jewish Hospital. I used to take my son who has CP there when he was young and it really helped him with hip, trunk and neck control and some fine motor in his hands. Of course, CP is not progressive but it can't hurt. It really helped his spasticity so I will let you know how I do.
Thank you again for easing my mind.
Maddy

 

[hopingforcure]

I wish you all the best, will be waiting to hear from you on your efforts. Spasicity for CP and the treatment make a lot of sense to me, I often wondered if CP treatments could be helpful for UMN problems, and vice versa. Sadly and both brightly enough maybe your family can be a connection for a possible help. I think that is so wonderful of your friend to offer her stem cells, and I do believe help will be arriving down this line sooner than later, what a thoughtless and compassionate offer. I think at the heart of man is good, and things like this continue to show me this.. Good luck and big hugs...