corleone
New member
- Joined
- Nov 16, 2020
- Messages
- 2
- Reason
- CALS
- Diagnosis
- 11/2020
- Country
- CA
- State
- ON
- City
- Mississauga
Hi all,
My wife was diagnosed with ALS on 12-Nov-2020, and her condition deteriorated pretty quickly.
I was aware of her condition since August, but unfortunately we have to go through the proper channels, in order to get the appointment at the ALS clinic (we live near Toronto, ON; by that I mean she had to be seen by her GP, who disagreed on the diagnosis, delayed the referral to neurologist, finally she was seen by the specialist who immediately referred her to ALS clinic. And the saga continues, we still haven’t been able to get an appointment at the clinic). Here we are, 4 months later, when my wife’s condition deteriorated significantly, and still not able to get the treatment. Her disease started with bulbar symptoms: dysarthria, that advanced significantly; more recently she started having dysphagia, and sooner than later she will need a G tube. She also needs a walker; I don’t know her FVC yet; her results are still not available. The biggest problem is that she can’t start Riluzole treatment unless we go to the ALS clinic. The Neurologist cannot prescribe it. Go figure!
In the meantime, here’s the specific topic I would like to hear your opinion.
While the ethology of this disease is not known, one of the avenues I would like to investigate more is the neuroinflammation.
She had a wrist fracture back in 2012, and had a titanium plate put in place. The plate was never removed, and approx. 1 year after surgery, she started having moderate, intermittent pain in/around the joint, going on for a couple of years. At that time, we didn’t consider removing it, which in retrospect was a bad decision. The pain subsided later, with occasional bouts of moderate pain in the same region.
So the question comes to this: knowing that local inflammation can trigger increased levels of TNF alpha production which is one of the major players governing the inflammation in the central nervous system, would it be reasonable to consider removing the plate? What is your experience in this regard?
Please let me know your thoughts.
My wife was diagnosed with ALS on 12-Nov-2020, and her condition deteriorated pretty quickly.
I was aware of her condition since August, but unfortunately we have to go through the proper channels, in order to get the appointment at the ALS clinic (we live near Toronto, ON; by that I mean she had to be seen by her GP, who disagreed on the diagnosis, delayed the referral to neurologist, finally she was seen by the specialist who immediately referred her to ALS clinic. And the saga continues, we still haven’t been able to get an appointment at the clinic). Here we are, 4 months later, when my wife’s condition deteriorated significantly, and still not able to get the treatment. Her disease started with bulbar symptoms: dysarthria, that advanced significantly; more recently she started having dysphagia, and sooner than later she will need a G tube. She also needs a walker; I don’t know her FVC yet; her results are still not available. The biggest problem is that she can’t start Riluzole treatment unless we go to the ALS clinic. The Neurologist cannot prescribe it. Go figure!
In the meantime, here’s the specific topic I would like to hear your opinion.
While the ethology of this disease is not known, one of the avenues I would like to investigate more is the neuroinflammation.
She had a wrist fracture back in 2012, and had a titanium plate put in place. The plate was never removed, and approx. 1 year after surgery, she started having moderate, intermittent pain in/around the joint, going on for a couple of years. At that time, we didn’t consider removing it, which in retrospect was a bad decision. The pain subsided later, with occasional bouts of moderate pain in the same region.
So the question comes to this: knowing that local inflammation can trigger increased levels of TNF alpha production which is one of the major players governing the inflammation in the central nervous system, would it be reasonable to consider removing the plate? What is your experience in this regard?
Please let me know your thoughts.