- Joined
- Nov 18, 2014
- Messages
- 4,951
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
In February I noticed my right knee started to hurt after exercising in pool. Just sitting on a noodle and peddling it like a bicycle (same as I had been doing for last year). I also continued walking on a treadmill for 10 minutes (1/2 mile) each morning, sometimes on a slight incline to get my heart rate a little higher.
Went to Mayo. Neuro said he didn't think pain was related to ALS. Sent me to Rheumy because of family history of autoimmune diseases, low positive ANA, and Hashimoto's. Neuro was convinced pain was caused by fibromyalgia. Blood work ordered before Rheumy visit. Rheumy said ANA was because of Hashimoto's and he didn't believe I had fibromyalgia. He referred me to Orthopedist. Went to Altamonte yesterday and saw the group that the Orlando Magic uses. Brought report of negative MRI from February. They did x-rays and said my knee joints look excellent. He gave me a shot of steroids and something in the "caine" family. Gave me a slip for PT and I drove home. I've been to three PTs in four years. All made me worse. Found one recommended by friend who has experience in neuro (mainly MS). If no improvement in six weeks, ortho wants me back for new MRI since the pain is much worse than February.
This is all in my "good" leg. It feels like a torn meniscus (had one in other knee from a skiing accident way, way back.) The ortho agreed that my "pain point" was consistent with my thoughts. He wants me to send him the CD images which I should have taken with me but didn't because it would tack another half hour onto my drive. I'll get them this week and mail them to him.
You know, ALS is bad enough. PALS at my stage of progression are still going out, swimming, even walking their dogs. I can still walk on my toes and heels although my balance stinks.
All doctors agreed I was a "complex case" I just feel the pain.
And I'm so tired of people telling me, "you'll beat it." I know they mean well but it feels like I'm about to explode and I don't want to do it to someone innocent.
To make matters worse, two more ladies in my hometown were recently diagnosed. That tiny village has no resources. The closest hospital is an hour away. My poor brother is stuck up there with beginning dementia and failing physically. He's 82 and fell recently. He and his wife have tickets to return to Florida in November with no other support but me. They are in denial about my prognosis. One of their daughters has not contacted me in over a year and the other calls only to discuss her father. If the subject turns to ALS, I'm swiftly dismissed.
The cannabis gives me bad heart palpitations if I work up to a dose that helps the pain. I can take as much CBD as I want without issues. It's the THC.
I sold my van in January because the condo needed windows badly. Nobody would drive the van because they were afraid. I drove it a couple of times and it was different than driving my SUV but it didn't scare me. That's not the point.
When I make the transition to my PWC I'll have to buy an old used rear access van because the parking spots are narrow in this building. Fortunately, the building has accessible ramps so I'm able to go from my condo outside and even around to the pool area as long as I or someone I'm with can unlock the gate to the pool. The social room is also accessible. I met a local guy who drives sick people around so he'll be the one to drive me. We have virtually no public transportation.
I really just needed to vent. I envy PALS who have people helping them every day. I've made some very nice friends at this condo and one woman is driving me to church each Sunday. The church we found is not totally accessible but it does have one ramp and just needs another to make it accessible. Sunday I'll have a closer look. It is a small church only 1/2 mile away and I like the pastor. He wears shorts and crocks and his preaching is all about love.
Then there's Trump........
Went to Mayo. Neuro said he didn't think pain was related to ALS. Sent me to Rheumy because of family history of autoimmune diseases, low positive ANA, and Hashimoto's. Neuro was convinced pain was caused by fibromyalgia. Blood work ordered before Rheumy visit. Rheumy said ANA was because of Hashimoto's and he didn't believe I had fibromyalgia. He referred me to Orthopedist. Went to Altamonte yesterday and saw the group that the Orlando Magic uses. Brought report of negative MRI from February. They did x-rays and said my knee joints look excellent. He gave me a shot of steroids and something in the "caine" family. Gave me a slip for PT and I drove home. I've been to three PTs in four years. All made me worse. Found one recommended by friend who has experience in neuro (mainly MS). If no improvement in six weeks, ortho wants me back for new MRI since the pain is much worse than February.
This is all in my "good" leg. It feels like a torn meniscus (had one in other knee from a skiing accident way, way back.) The ortho agreed that my "pain point" was consistent with my thoughts. He wants me to send him the CD images which I should have taken with me but didn't because it would tack another half hour onto my drive. I'll get them this week and mail them to him.
You know, ALS is bad enough. PALS at my stage of progression are still going out, swimming, even walking their dogs. I can still walk on my toes and heels although my balance stinks.
All doctors agreed I was a "complex case" I just feel the pain.
And I'm so tired of people telling me, "you'll beat it." I know they mean well but it feels like I'm about to explode and I don't want to do it to someone innocent.
To make matters worse, two more ladies in my hometown were recently diagnosed. That tiny village has no resources. The closest hospital is an hour away. My poor brother is stuck up there with beginning dementia and failing physically. He's 82 and fell recently. He and his wife have tickets to return to Florida in November with no other support but me. They are in denial about my prognosis. One of their daughters has not contacted me in over a year and the other calls only to discuss her father. If the subject turns to ALS, I'm swiftly dismissed.
The cannabis gives me bad heart palpitations if I work up to a dose that helps the pain. I can take as much CBD as I want without issues. It's the THC.
I sold my van in January because the condo needed windows badly. Nobody would drive the van because they were afraid. I drove it a couple of times and it was different than driving my SUV but it didn't scare me. That's not the point.
When I make the transition to my PWC I'll have to buy an old used rear access van because the parking spots are narrow in this building. Fortunately, the building has accessible ramps so I'm able to go from my condo outside and even around to the pool area as long as I or someone I'm with can unlock the gate to the pool. The social room is also accessible. I met a local guy who drives sick people around so he'll be the one to drive me. We have virtually no public transportation.
I really just needed to vent. I envy PALS who have people helping them every day. I've made some very nice friends at this condo and one woman is driving me to church each Sunday. The church we found is not totally accessible but it does have one ramp and just needs another to make it accessible. Sunday I'll have a closer look. It is a small church only 1/2 mile away and I like the pastor. He wears shorts and crocks and his preaching is all about love.
Then there's Trump........