BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Hi ... I have a new criterium (is that correct? Can't tell my ums from my es's) for judging doctors: Do they relate to the whole patient, no matter what their specialty may be?
It was an ENT who put together my slurred speech with my tongue fasics and said "Get thee to a neurologist." My PCP had never noticed fasics.
It was my UCLA neuro who commented on my posture and suggested I probably have compression fractures on my spine. I had commented several times to my PCP that I have lost almost 4 inches in height in the last few years, and had never even gotten an acknowledgement that I had spoken.
Tuesday, it was my pulmonologist who diagnosed me with thrush, as we discussed why the BiPap was so very uncomfortable ... it made my mouth and throat burn horribly, even more than usual. They have been burning like that since about November. When I came home from my last clinic visit at UCLA in December, my mouth was filled with blood, which was still flowing and seemed to be coming from my cheek. I figured the mouthpiece for the lung function test must have irritated the cheek.
I had 4 or 5 more episodes of bleeding in my mouth since then, so I changed the diagnosed to oral cancer, and I planned to see my dentist about it one of these days. In fact, I have a letter half-written to him explaining why it's OK for him to examine and treat me, despite the ALS. I was still attributing the pain in my mouth and throat to the Scop patch and dry mouth.
I couldn't mention the painful throat here, as I figured if I did, every 22 year old in the Northern Hemisphere with sniffles would Google sore throat and end up here, sure they're dying.
Anyway ... I'm now taking an anti-fungal med (with the flashlight, I can see white spots in my throat. I can also see streaks of dark red on my cheek, which I assume is the source of the bleeding. I asked the pulmo what thrush looks like, and he said very red and angry looking, which sure describes my tongue and throat.
He also said it was probably a B vitamin deficiency.
I had only heard of thrush in terms of HIV, but Dr. Google says malnutrition can cause it, as can an impaired immune system in serious illnesses, poor fitting dentures, etc. My mouth has changed so much that my partials don't fit at all now. So I was right ... this does call for a trip to the dentist !
So, the anti-fungal is working ... the pain has almost gone away. I had stopped taking vitamins for several months, including the Bs, which my cardio said to take. Everything was just too hard to swallow. But now I'm swallowing pills with yogurt and it works great. I'm going to go back to making fruit smoothies with supplements and will use the tube, since I can't stand the taste of the supplements.
And hopefully, when I get new settings on the BiPap and a well-fitting mask, I'll be able to actually use it.
And life will be wonderful, (except for the ALS).
Moral: (Wo)man does not live by ice cream alone.
Again ... if you've read this far, you're probably roaming around Google with 6 symptoms in search of a disease, A SORE THROAT IS NOT A SYMPTOM OF ALS.
It was an ENT who put together my slurred speech with my tongue fasics and said "Get thee to a neurologist." My PCP had never noticed fasics.
It was my UCLA neuro who commented on my posture and suggested I probably have compression fractures on my spine. I had commented several times to my PCP that I have lost almost 4 inches in height in the last few years, and had never even gotten an acknowledgement that I had spoken.
Tuesday, it was my pulmonologist who diagnosed me with thrush, as we discussed why the BiPap was so very uncomfortable ... it made my mouth and throat burn horribly, even more than usual. They have been burning like that since about November. When I came home from my last clinic visit at UCLA in December, my mouth was filled with blood, which was still flowing and seemed to be coming from my cheek. I figured the mouthpiece for the lung function test must have irritated the cheek.
I had 4 or 5 more episodes of bleeding in my mouth since then, so I changed the diagnosed to oral cancer, and I planned to see my dentist about it one of these days. In fact, I have a letter half-written to him explaining why it's OK for him to examine and treat me, despite the ALS. I was still attributing the pain in my mouth and throat to the Scop patch and dry mouth.
I couldn't mention the painful throat here, as I figured if I did, every 22 year old in the Northern Hemisphere with sniffles would Google sore throat and end up here, sure they're dying.
Anyway ... I'm now taking an anti-fungal med (with the flashlight, I can see white spots in my throat. I can also see streaks of dark red on my cheek, which I assume is the source of the bleeding. I asked the pulmo what thrush looks like, and he said very red and angry looking, which sure describes my tongue and throat.
He also said it was probably a B vitamin deficiency.
I had only heard of thrush in terms of HIV, but Dr. Google says malnutrition can cause it, as can an impaired immune system in serious illnesses, poor fitting dentures, etc. My mouth has changed so much that my partials don't fit at all now. So I was right ... this does call for a trip to the dentist !
So, the anti-fungal is working ... the pain has almost gone away. I had stopped taking vitamins for several months, including the Bs, which my cardio said to take. Everything was just too hard to swallow. But now I'm swallowing pills with yogurt and it works great. I'm going to go back to making fruit smoothies with supplements and will use the tube, since I can't stand the taste of the supplements.
And hopefully, when I get new settings on the BiPap and a well-fitting mask, I'll be able to actually use it.
And life will be wonderful, (except for the ALS).
Moral: (Wo)man does not live by ice cream alone.
Again ... if you've read this far, you're probably roaming around Google with 6 symptoms in search of a disease, A SORE THROAT IS NOT A SYMPTOM OF ALS.