Lymes vs ALS
Well, two neurologists have done EMG & NCS tests on me finding MND. And my bulbar symptoms don’t come with Lymes, it points to ALS…
I will of course mention Lymes to my neuro when I see him next. (whenever that is)
Symptoms (Bulbar)
Prognosis for PBP patients is poor. Progressive bulbar palsy symptoms can include progressive difficulty with chewing, talking, and swallowing (Merck 2005). Patients can also exhibit reduced gag reflexes, weak palatal movements, fasciculations, and weak movement of the facial muscles and tongue. In advanced cases of PBP, the patient may be unable to protrude their tongue or manipulate food in their mouth (Campbell 2005). Patients with early cases of PBP have difficulty with pronunciations, particularly linguals and velars, and may show problems with drooling saliva. If the corticobulbar tract is affected a pseudobulbar affect with emotional changes may occur (Merck 2005). Because PBP patients have such difficulty swallowing, food and saliva can be inhaled into the lungs. This can cause gagging, choking, and increasing the risk of pneumonia (Merck 2005). Death, which is often from pneumonia, usually occurs 1 to 3 years after the start of the disorder.
My vet friend with Lyme has none of the symptoms you do. Or she didn’t the last I talked to her.
Pat can you fill me in on why the gravatar I made yesterday is showing up today? Do you have to code it some how at the comment site?
I meant not showing up. I see it did here but not at my friend John’s.
http://writingman09.wordpress.com gone today even from yesterday’s post where it was.
I don’t know Bonnie, I see a bird. It could be a cache issue….
Happy New Year!
I could start again with the apologies for not checking in, though i’d meant to. But there wouldn’t be anything you already haven’t read…:-))
You’ve been in my prayers, always.
I am trying not to come across as one of those people who turn away and pretend that nothing is wrong, but so many medical terms i have never seen before. I have to catch up on my reading.
It’s overwhelming, when i think of how it must be for you. But you are teaching us a lot. Courage, love, giving, the value of life…
A New Year spells Hope, So I hope this is the year they have a breakthrough! And a year that you can look back upon as the past with an illness which didn’t have a cure. We can all hope for new discoveries. And in the meanwhile, we will always be here for you.
Wishing you and your family the very best for 2009.
Love,
-KC
I googled Lyme bulbar palsy and came up with even more links to read about misdiagnosis. When I read things like above that say sh*t about death, it just makes me mad and determined.
I see Bonnie’s bird too.
Lisa,
If it is my comment that you were referring to, I am sorry you find it offensive. Perhaps you do not know me, but allow me to clarify that as a practicing Buddhist, one of the philosophies that anchor Buddhism is : the impermanance of everything in the material (as in physical) world. However, that does not mean that I am not allowed to hope. I am just sorry that my “hoping” causes you great anger.
And A New Year, for me, does spell New Hope, and I want to share my thoughts with Pat, so there!
Oh no KC! I was referring to the medical information that Pat posted, specifically “Death, which is often from pneumonia, usually occurs 1 to 3 years after the start of the disorder.”. I really didn’t even read your comment originally. Sorry for any confusion. I get mad at the medical journalists and researchers who say these things in such concrete terms. In addition to Pat, whom I consider a great friend and an inspiration, I am also thinking of another friend with two small children who was recently diagnosed with brain cancer and told 3 to 5 years of life remains. No one knows that as a fact and to throw it out there like a cold, hard fact is enough to cause some people to give up hope. That is what makes me mad.
Dear Lisa,
Yikes!
Thank you for taking the trouble to come to my blog and explain.
I am really sorry I misunderstood your reference to the “above”. Since my comment was directly above yours, and the contents of my comment being what it was, I thought it had upset you.
My profuse apologies! (T_T)
Now before i go and put the other foot in my mouth as well, I will stop here with another profusely, deep, apology.
I am terribly, terribly sorry for misunderstanding your comment and hence, causing the confusion.
Pat, sorry about using your comment section like my public notice board…:P Hopefully, this is the last time…:D
I suppose living in Japan has left my English in shreds… I don’t dare write anymore, for fear my English teacher will be turning in her grave with all my butchering of the language…:D
Thanks you two for smoothing things over, I was worried!
KC, you better write again!!
KC, your English is probably better than mine. I’m constantly forgetting where apostrophes and commas go and I’ve been writing and speaking English only my entire life.