- Joined
- Nov 18, 2014
- Messages
- 4,888
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
Hello,
Since my dx I've been to three ALS Specialty Clinics. One was strictly for a second opinion and it was out of state.
Two weeks ago the doctor I ended up with (since my diagnosis) told me that the level of pain I was experiencing did NOT happen in ALS and said "pain other than cramping comes at the end of the disease when the muscles have atrophied a great deal and patients become unable to move at all." I told him the pain in my trunk coincided with overuse and weakness and my sprained ankle was not getting better even though the swelling had gone down. He said "he didn't think it was the ALS". I told him about the research I had done and the interviews where MANY PALS had bad pain with ALS. Two people in my local group were on pain patches long before their limbs were paralyzed. He actually said, "I doubt everyone you interviewed actually had ALS if their pain was that prominent and especially those in other countries."
He then went on to suggest I get further testing to locate the source of the pain because it could be an autoimmune disease (since I already have one) and have a strong family history of autoimmune diseases. He said another specialty might be able to help my pain. He also said I needed another complete Pulmonary function test because of the multiple breathing issues I have had since onset. I agree with him on that.
So basically my diagnosis remains the same but now I have "other medical problems" on top of a motor neuron disease.
I watch other PALS do things, go out, travel. But I'm telling you I was a very tough push through it type of person who was extremely active and robust. Gaining 30 pounds probably didn't help much but this is the most horrible pain I've ever had and I can no longer tolerate anything other than slippers and socks. I seem to walk better in them. My back hurts even with Oxy.
I guess I should have put this in vent. Feel free to move it. He didn't think I was depressed but I am.....I just hide it well so my pain won't be dismissed as depression. I wasn't depressed before the pain started.
Since my dx I've been to three ALS Specialty Clinics. One was strictly for a second opinion and it was out of state.
Two weeks ago the doctor I ended up with (since my diagnosis) told me that the level of pain I was experiencing did NOT happen in ALS and said "pain other than cramping comes at the end of the disease when the muscles have atrophied a great deal and patients become unable to move at all." I told him the pain in my trunk coincided with overuse and weakness and my sprained ankle was not getting better even though the swelling had gone down. He said "he didn't think it was the ALS". I told him about the research I had done and the interviews where MANY PALS had bad pain with ALS. Two people in my local group were on pain patches long before their limbs were paralyzed. He actually said, "I doubt everyone you interviewed actually had ALS if their pain was that prominent and especially those in other countries."
He then went on to suggest I get further testing to locate the source of the pain because it could be an autoimmune disease (since I already have one) and have a strong family history of autoimmune diseases. He said another specialty might be able to help my pain. He also said I needed another complete Pulmonary function test because of the multiple breathing issues I have had since onset. I agree with him on that.
So basically my diagnosis remains the same but now I have "other medical problems" on top of a motor neuron disease.
I watch other PALS do things, go out, travel. But I'm telling you I was a very tough push through it type of person who was extremely active and robust. Gaining 30 pounds probably didn't help much but this is the most horrible pain I've ever had and I can no longer tolerate anything other than slippers and socks. I seem to walk better in them. My back hurts even with Oxy.
I guess I should have put this in vent. Feel free to move it. He didn't think I was depressed but I am.....I just hide it well so my pain won't be dismissed as depression. I wasn't depressed before the pain started.