← Return to Chronic Fatigue: Finding someone who can help me

Discussion

Chronic Fatigue: Finding someone who can help me

Just Want to Talk | Last Active: Oct 19 6:15am | Replies (11)
Comment receiving replies
@statenislander

I'm not in a position to pay out of pocket medical expenses. For the last two years I've only worked two days a week, and my problem keeps me from working a full schedule. So that has put me in a difficult financial position as it is.

I have a few issues I haven't mentioned, but since they manifested years after that day in September 2003 when my fatigue (or weakness) started, I don't consider them primary causes of the problem.

My bout with COVID-19 seems to have caused me memory problems. Especially short term memory problems. So, I can't remember everything that was done as far as medical tests over the las couple of years, but the idea was to get my records and have the right individual pore over them to determine the next steps.

So I have to figure out how to find an "Integrative medicine" or "Infectious Disease" doctor, and determine if my medical insurance will cover that.

Here on Staten Island most of my appointments have been with medicine practitioners associated with Staten Island University hospital. (But I'm a 25 minute ferry ride from Manhattan). I'm not sure what a university medical school is.

I'm also not sure what going to a "clean air environment" entails, but I guess I'll have to look into finding an Immunolgist, that is knowledgeable about chemical sensitivities.

Thanks.

Statenislander

Jump to this post

Replies to "I'm not in a position to pay out of pocket medical expenses. For the last two..."
hjb123 | @hjb123 | Oct 19 6:15am

I have had a very similar experience. It's been going on since 2015. I have secondary adrenal insufficiency, is the diagnosis the endocrinologist gave me after doing a acth stimulation test. It measures how your body responds to cortisol. I have to take hydrocortisone or prednisone the rest of my life, wear an alert bracelet, carry an injection of steroids with me in case i start to go down hill fast. You can die from not receiving proper care and its very scary how many trained medical professionals have never heard of it. If I don't take the steroids my legs burn,can't walk at all,sleep 16 hrs a day, had a heart attack, left ventricle leak now, gained 60 lbs, use oxygen at home, chronically ill...the list is long, but the leg pain was the worst and not being able to work. I got covid when it first came here and I just kept telling the doctors, family and friends, that I feel like I have the flu from the waist down. I have since lost most of my friends, family and husband's support. I have spent all my savings on medical, living and alternative health services to try to find an answer to get back to myself. I ran a very successful sports therapy clinic with 6 doctors, massage therapist, acupuncture, chiropractic, sleep apnea. So I also had a lot of resources to try. I have since had to stop working due to not able to know if I can get out of bed. It's devastating, I spent 25 years mastering my sports therapy skills, grow a woman owned small business to watch it fall apart as I am not able to be there. I had to reinvent my office to renters to cover the mortgage. I am only 43, used to play hockey and compete in women's powerlidting, work out 6 days a week, in amazing shape. I don't even recognize myself mentally or physically. The steroids help a lot, but they come with their own set of problems. Anyways, hope my story helps in some way. I wish you the best of luck. It took me years and many er visits, specialist and money. Check out addison's disease and secondary adrenal insufficiency. I knew with taking prednisone I felt my"normal". So I had started researching on my own medical stuff related to steroids. There is one test only that confirms it. So to me I thought, might as well try 1 last test.

An ACTH (cosyntropin) stimulation test assesses how well your adrenal glands respond to adrenocorticotropic hormone

VIEW AND REPLY