I still feel that the past has come back to haunt me (see my previous column of Oct. 14 for more information).
I still do not have a medical answer to my health issue. I have met with my PCD (primary care doctor) and my wife. My PCD has taken a skin sample from an infected area and sent it out to a diagnostic lab. I have gone to a blood lab and given blood twice. Still no answer back from either.
My PCD has sent a referral to the allergy and immunology program at St. Joseph’s Hospital in London. I have received a letter back from them that they may be able to see me in 12 to 18 months. I wonder what my PCD put on the referral form supplied by the hospital on their Request For Consultation form?
I hope she checked ‘Urgent.’
I still feel that Angioedema is the prime cause of my health issue. And it may be a similar to what I experienced 70 years ago. I still believe in ‘self-care’ so I went to see our pharmacist. He looked up. in his large database, ‘angioedema’ and found the treatments to be steroids and antihistamines. This is what the Emergency Doctor prescribed for me three weeks ago. I felt better already. There may be light at the end of the tunnel. I was on prednisone for about three weeks (no improvement), an antihistamine for two weeks (now off – no improvement). Plus, for about six weeks I was on four different prescription mouthwashes (with no improvement). Still looking for answers!
In the last two weeks my strength has gotten worse; I get fatigued easier and seem to run out of breath quickly when I get even slightly active. I was just out in the garden trying to get end of season work done. It didn’t take 30 minutes for me to have to quit, exhausted. I went back in an hour, but again was quickly fatigued. When I am in my own house I feel that the floor is vibrating. I know it isn’t – my wife tells me so. Why is my brain feeling this vibration? It grows stronger as the day goes on. I also wonder why I lose my energy so quickly. Many, many questions. Not like me at all, even at 82 years of age.
You may know, through my columns, that I believe in ‘self-care.’ This means that when I have issues to which I see no solution, I put on my consulting cap and go looking for solutions. I am my own client.
So, I have entered my health issues into Google and searched for possible solutions. The search was for; “itches, tingling, swelling, of strength and fatigue.”
Somewhat surprisingly to me, four diseases popped up:
– peripheral neuropathy: could be worse – balance, muscle weakness and touch sensitivity or tingling;
– multiple sclerosis (MS): this would not be good – a major disease;
– Guillian-Barre Syndrome (GBS) – a rare condition caused by a problem in the nervous system (also not good); and
– angiodema caused by swelling of areas of tissue under the skin, fatigue and muscle weakness – best case scenario.
After this research I have began to realize why my PCD is taking too much time to get back to me. Doesn’t make me less patient but now I understand, sort of.
As I have said before, I am lucky. About six weeks ago I signed up to be a volunteer in a research study designed to find out potential solutions for those with neurogenerative issues like me. Well, in about two weeks I should get a full, detailed report all about me. They studied my activity (with three wearable sensors) and had me give nine viles of blood. A lot of my health questions may be answered.
Involved in this project are all the ‘biggies’ of brain research in Ontario – Ontario Brain Institute, Ontario Neogenerative Research Institute and the Alzheimer’s Society of Ontario. The study is called the HANDDS-ONT study.
More to come as “My Voyage with Dementia” continues.
***
Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth since 2015. Murray was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease to AD. He shares his experiences in his column entitled “My Voyage with Dementia.” Follow him on his blog entitled Voyage with Dementia – https://myvoyage553264702.wordpress.com
