Kenobi
New member
- Joined
- Jul 30, 2015
- Messages
- 2
- Reason
- Friend was DX
- Country
- US
- State
- AZ
- City
- Phoenix
Hello,
My friend and mentor was was just recently diagnosed with ALS/MND. It flipped us both on ours heads. Since regaining a little footing however, we've been doing a great deal of reading and research looking for...anything to help really. We've come across some naturophathic treatments for symptom management and the rilutek has been started; and we are following a few clinical trials as well, mostly just tracking their progress so far. In the mean time we've learned more about ALS/MND but still have (just as many) questions.
We've learned that ALS/MND is a progressive disease that presents differently in every person, so no one case is ever the same but we have been wondering the neurologist was perhaps premature in his diagnosis or too focused on family history; or perhaps correct and we are only seeing the very early symptoms of this process.
Most likely this is familial ALS/MND as there is a family history with an Aunt and Grandmother who were diagnosed with ALS but the mother is still negative or at least showing no positive signs of having active ALS/MND. The other symptoms we are questioning are large lack of upper motor neuron signs aside from muscle tightness in one leg; however the Babinski's or plantar reflex test was negative and there is no presence of hyperreflexia or brisk reflexes in the affected limb. There weakness with very minimal muscle atrophy; fasciculations or twitching, and spasms and cramping are also occuring. And he tires more easily. Blood tests were negative and the EMG indicated nerve damage, I don't know if there was a conduction block.
The most concerning symptom that has developed recently is thickening saliva, but he is unsure if it is genuine or if he is psyching himself out or if it is his allergies acting up. He coughs or clears his throat more often, I've noticed. Which doesn't bode well for an alternative diagnosis but...I guess we're still in some denial.
I suppose the real question is, is it worth the expense to obtain a second diagnosis? I know not every case is the same with this disease but some insight from those who have walked this road would be appreciated.
Thank you
My friend and mentor was was just recently diagnosed with ALS/MND. It flipped us both on ours heads. Since regaining a little footing however, we've been doing a great deal of reading and research looking for...anything to help really. We've come across some naturophathic treatments for symptom management and the rilutek has been started; and we are following a few clinical trials as well, mostly just tracking their progress so far. In the mean time we've learned more about ALS/MND but still have (just as many) questions.
We've learned that ALS/MND is a progressive disease that presents differently in every person, so no one case is ever the same but we have been wondering the neurologist was perhaps premature in his diagnosis or too focused on family history; or perhaps correct and we are only seeing the very early symptoms of this process.
Most likely this is familial ALS/MND as there is a family history with an Aunt and Grandmother who were diagnosed with ALS but the mother is still negative or at least showing no positive signs of having active ALS/MND. The other symptoms we are questioning are large lack of upper motor neuron signs aside from muscle tightness in one leg; however the Babinski's or plantar reflex test was negative and there is no presence of hyperreflexia or brisk reflexes in the affected limb. There weakness with very minimal muscle atrophy; fasciculations or twitching, and spasms and cramping are also occuring. And he tires more easily. Blood tests were negative and the EMG indicated nerve damage, I don't know if there was a conduction block.
The most concerning symptom that has developed recently is thickening saliva, but he is unsure if it is genuine or if he is psyching himself out or if it is his allergies acting up. He coughs or clears his throat more often, I've noticed. Which doesn't bode well for an alternative diagnosis but...I guess we're still in some denial.
I suppose the real question is, is it worth the expense to obtain a second diagnosis? I know not every case is the same with this disease but some insight from those who have walked this road would be appreciated.
Thank you