My diagnosis
Jun 12, 2016 6:39:34 GMT
Post by shannon on Jun 12, 2016 6:39:34 GMT
Hi everyone!
Getting this diagnosis has been a long and tretorous road. I feel that I had some early signs of of PID over the years. My mom was an RN and she suspected I might have had health issues that were more than what the Drs told us. She was very good at keeping symptoms at bay but I was sick a lot when I was a child but I always recovered fine.
As an adult it always seemed that I needed more sleep than others. I did keep active and healthy and have been in martial arts over the years which I think helped. My mom got me onto vitamin suppliments and I kept it up with adjustments and researching even some herbal remedies for fatigue and immune support. I feel it all helped hold it back at least for a while. I know the drs don't feel that way but I think it did.
I started with extreme fatigue about 20 yrs ago and eventually I was told I had fibromyalgia. 2 yrs after that I was hypothyroid.
I've always been active, ate healthy and kept household chemicals minimal.
Then over the last few 5 or more years the fatigue returned but it would wax and wain without explanation. Then 2 years ago I noticed a small red rash on my cheek. After about a couple of months I began with spots on my arms. It eventually spread to my chest legs torso and it was all over my face. It burned and itched terribly. The drs were lost initially. They thought I had lupus but no matter how man tests they did it was always negative. Finally a research dermatologist ordered the right tests and it was in fact tinia or commonly known as ringworm (not actually a worm but a fungal infection). They treated me for that and cleared it up. Soon afterwards my mouth became hyper sensitive to everything acidic and it was painful to eat. I had chronic thrush...another fungal infection but this one was resistant to meds. I found something called Alpha Lipoic Acid suppliment and it actually gave me some relief but I had to take a lot if it.
Then last summer (after seeing many specialists) my regular dr decided to order tests for immunoglobulins. I was having several odd symptoms which didn't make sense. I was getting yeast rashes anywhere that I'd sweat, extreme fatigue, low mood, shortness of breath, sweat easily, couldn't stand heat, couldn't do anything active, blepharitis, tingling in my feet and unexplained weight gain- 20 lbs in 2 years and soreness in lymphnodes.
And there it was!!! So I was booked into a clinic where Hematologists, Immunologist, Rhumatologists and Allergists all work together. They sent me for more specialized tests that had to be sent to one if only 2 labs in Canada that do them. What they did find was all the Ig's were low but IgA was non detectable. After they finally narrowed down the type of deficiency I have and they had some examples of a pattern of its fluctuations they put me on the SC Ig. I'm 3 weeks in and I'm feeling better. I know this is a lifelong thing but I'm so glad to have answers and treatment.
Thanks for reading! Don't give up!!
Getting this diagnosis has been a long and tretorous road. I feel that I had some early signs of of PID over the years. My mom was an RN and she suspected I might have had health issues that were more than what the Drs told us. She was very good at keeping symptoms at bay but I was sick a lot when I was a child but I always recovered fine.
As an adult it always seemed that I needed more sleep than others. I did keep active and healthy and have been in martial arts over the years which I think helped. My mom got me onto vitamin suppliments and I kept it up with adjustments and researching even some herbal remedies for fatigue and immune support. I feel it all helped hold it back at least for a while. I know the drs don't feel that way but I think it did.
I started with extreme fatigue about 20 yrs ago and eventually I was told I had fibromyalgia. 2 yrs after that I was hypothyroid.
I've always been active, ate healthy and kept household chemicals minimal.
Then over the last few 5 or more years the fatigue returned but it would wax and wain without explanation. Then 2 years ago I noticed a small red rash on my cheek. After about a couple of months I began with spots on my arms. It eventually spread to my chest legs torso and it was all over my face. It burned and itched terribly. The drs were lost initially. They thought I had lupus but no matter how man tests they did it was always negative. Finally a research dermatologist ordered the right tests and it was in fact tinia or commonly known as ringworm (not actually a worm but a fungal infection). They treated me for that and cleared it up. Soon afterwards my mouth became hyper sensitive to everything acidic and it was painful to eat. I had chronic thrush...another fungal infection but this one was resistant to meds. I found something called Alpha Lipoic Acid suppliment and it actually gave me some relief but I had to take a lot if it.
Then last summer (after seeing many specialists) my regular dr decided to order tests for immunoglobulins. I was having several odd symptoms which didn't make sense. I was getting yeast rashes anywhere that I'd sweat, extreme fatigue, low mood, shortness of breath, sweat easily, couldn't stand heat, couldn't do anything active, blepharitis, tingling in my feet and unexplained weight gain- 20 lbs in 2 years and soreness in lymphnodes.
And there it was!!! So I was booked into a clinic where Hematologists, Immunologist, Rhumatologists and Allergists all work together. They sent me for more specialized tests that had to be sent to one if only 2 labs in Canada that do them. What they did find was all the Ig's were low but IgA was non detectable. After they finally narrowed down the type of deficiency I have and they had some examples of a pattern of its fluctuations they put me on the SC Ig. I'm 3 weeks in and I'm feeling better. I know this is a lifelong thing but I'm so glad to have answers and treatment.
Thanks for reading! Don't give up!!