General Discussion -  newbie to PPs (73 views) Notify me whenever anyone posts in this discussion.Subscribe
 
From: DoriK5/21/17 2:05 PM 
To: All  (1 of 4) 
 1525.1 

Hi All,
I am new to this forum and new to PPS...although I have not been successful so far in getting my doctor to actually agree with my own diagnosis...I am fairly sure that all I have been complaining about for many years boils down to PPS. I have all the symptoms, including blood tests always coming back normal. Extreme fatigue that sometimes by afternoon at work starts to seal my eyes up (and I could just lay down on the floor and go to sleep). I have a terrible time with cramps in my legs and intermittent swelling and pain in joints and legs. All is exacerbated by stress and over activity. What I use to be able to do easily now puts me to bed for days. All viruses I get are twice as long and more severe than others getting that same virus. I have times when I am doing good and am able to run around in my normal routine. For a long time both my doctors felt I had some autoimmune issues (as my thyroid is already capoot) maybe MS or another such ailment...problem is that nothing ever comes up for those maladies and I only have "some" symptoms of each...including Sjogrens as I have dry mouth, dry eyes and throat etc...it seems like I started to see things going wrong about 20 years ago...but over time I blew it off and enjoyed my times of relief and didn't think much about it. However, in the last 3-4 years my symptoms have been increasing in strength and duration...I have complained to my doctor that it was impossible that nothing comes back on tests and yet I feel so badly every day...she started to treat me as if I was faking or overreacting...it was finally my sister who lives far away from me (and who has acted as a health advocate) called me and told me to look up the symptoms of PPS, saying she had a patient whom the doctor asked if she had ever had polio...and discussed with her the possibility of PPS. She immediately recognized the symptoms I had been complaining about for years.

I also have silent migraines and sleep problems which my headache doctor has helped me deal with by using Magnesium and Melatonin although the Melatonin doesn't work as good as Xanax (which I take occasionally when I just cannot stop my thinking brain)... I have a stressful job and often engage in physically demanding events etc...so they thought I was just stressed and in need of rest (which is true but not encompassing enough to explain everything I endure. When I first mentioned the PPS to my doctor, she looked at me and said " I did not realize that you had Polio" even though it is in my records. I wrote her a list of my symptoms and asked her to peruse it at her leisure to see if anything clicked as to what my problem could be. I am sure that went nowhere as I have not heard form her in 4 weeks now <wryly smiling>...

So am just wondering if others here have experienced these same kinds of things and what you might recommend as to how to get doctors to pay attention to what I am saying???
DoriK

 
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From: Sally (SARABOWLDEN) DelphiPlus Member Icon6/1/17 11:53 PM 
To: DoriK  (2 of 4) 
 1525.2 in reply to 1525.1 

Hi DoriK! I'm sorry I haven't answered sooner, but I was dealing with a string of medical and PPS issues myself, one of which landed me in the hospital for a couple of weeks I'm just now catching up with forums and emails (don't ask--I'm getting multiple copies of post 10 days old an newer, and I mean multiple--I've gotten over 600+ non-spam ones in a day). I'm glad you read the earlier posts--my advice is the same--I hope to see you sgsin in the Coffee House!

Sara

 

 
From: DoriK6/2/17 2:04 PM 
To: Sally (SARABOWLDEN) DelphiPlus Member Icon  (3 of 4) 
 1525.3 in reply to 1525.2 
Hi
I have moved to the Coffee House Facebook closed forum for PPS...have found an amazing amount of info there and some very active sharers of experiences...I posted a question and received 122 responses from room members...thanks for responding here though...just never could get any one to answer here <3
Dori
 

 
From: Sally (SARABOWLDEN) DelphiPlus Member Icon6/4/17 7:15 PM 
To: DoriK  (4 of 4) 
 1525.4 in reply to 1525.3 

Eve3ryone is gone to FaceBook. I keep this one open just in case someone needs help.

Sara

 

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