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Autoimmune something: Struck with extreme fatigue
I know this will be a long read but please bear with me.
In 2014 I suddenly was stricken with extreme fatigue, my body racked with severe pain and strange swelling in the right arm. After fighting doctors until 2018, I was finally sent to orthopedics. Orthopedics, did the initial evaluation and found my tendons and muscles were crystalizing as well as full disc degeneration from C3 to the coccyx. He ordered an ANA panel which came back with a titer of 1:1250 with a nucleolar pattern. He diagnosed me with systemic sclerosis. I was then sent to rheumatology where he reran the ANA panel using a different method which costed me 3800 because the method he chose was not covered by insurance. It came back with dual 1:1250 nucleolar pattern and 1:80 speckled pattern. He said it was fibromyalgia and outright called me a liar and that I was drug seeking. At this point I had not been prescribed anything. He put me on gabapentin 600 mg nightly and said he would see me in a year. Even though it relieved the pain at night, the swelling and loss of use of my right arm continued. In the meantime, my kidney functions decreased and breathing issues started. I also started having blood pressure issues and through all the testing found I had latent TB. I was sent to nephrology, cardiology, pulmonology and infectious disease. Even though I have told all my physicians of the diagnosis, showed them the labs and many scans I am being treated with skepticism. Pulmonology does annual scans which show interstitial lung disease but says that since I am a smoker it is the smoking and cannot be scleroderma. Cardiology which I just fired says it is just all the drugs they have me on and the harden arteries are from smoking. I have a new rheumatologist who is trying but says it is unspecified systemic connective tissue disorder and probably rheumatoid arthritis because of my age. I also have been diagnosed with Hashimoto Disease, peripheral vascular disease, ground glass in my lungs, severe asthma and COPD. I realize I need to quit smoking but at this point, I am allowed nothing for pain and as much as I hate it the nicotine does ease the pain. My medications are many. I am lost to what my next move should be or what direction I should be going or if I should just throw in the towel. There is no quality of life and I need a new direction.
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Did you need a prescription for the edibles. and if there is any thc in them then it is illegal for use in my state.
It took over 4 yrs to get a diagnosis but now the fight for proper treatment. The gabapentin helps with the night pain so I can sleep but with nothing during the day the struggle is real. I have been told that I have less than 5 years and less if progression keeps going as it has been. I do not put a grain of salt on their time lines as this is not the first time I was told the end was near and bypassed it totally. I am just tired and frustrated.
Ginger, Thank you. I would never ask for a diagnosis from any online forum. I have dealt with 5 rounds of cancer. Unexplained infections, read my last rights 3 times and died twice. I cannot talk for others but since I have a medical record from birth to date and can show documentation for everything it irritates me that to date, no one doctor has bothered sitting down and going through it to get a full and accurate picture of what is happening. Putting the puzzle together as I am sure all the pieces are there. It takes a lot to push me to seek help and when you do and you get no where it is hard.
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2 ReactionsThank you. The swelling was first the hand, then moved up to the armpit. With two diuretics, two blood pressure pills, it is now only in the hand. I have one leg that swells also. I have been told so many different things it is almost a game now each time I go to what will it be this time.
I am the opposite, I have a very high crp but low sed rate. I am on levothryoxine for the Hashimoto and with the history of multiple cancers will not use biologicals. I did not tolerate methotrexate and am having issues with the new medication Arava. Plaquenil and steroids have proven to be the best so far but because of the failing kidneys they wean me off, try something new then put me back on it. At this point I am willing to chance dialysis and have a quality of life then feeling like crap all the time and no quality of life. At least dialysis can be done at night in your home while you are sleeping.
I have to see if there is a Mayo clinic near me. I do have insurance but also have to verify that which ever place I go is covered. I have not tried cannabis as it is illegal in my state but at this point and looking at going to my other home where it is legal to try it. Covid just has travel almost impossible right now for me.
I will look him up. Thank you
Travel definitely is iffy due to COVID. If you do get some cannabis I think an edible form is preferable to smoking just for the sake of your lungs. You can make a tincture. If you need to know how to do that, let me know. The THC is drawn out of the leaves by oil or alcohol (like whiskey). I think with the oil route the leaves need to be cooked in oil for a certain number of hours. There are MJ cookbooks.
No you do not need a prescription for the edibles and NO THC at all or I wouldn’t take them. Please try the site I posted earlier or contact the “UPSTATE CBD OIL CLINIC” online. A Nurse practitioner is always there. She will answer all your questions about CBD and it’s benefits . Her name is Renata. She’s wonderful. They ship products for 5.99$. You tell her your problems/afflictions and she will instruct you to the proper dose and if an edible or tincture is better for you and what dose. It really “ saved” me.
@devonsnana There are three Mayo Clinic Campuses - Minnesota, Florida and Arizona but Mayo Clinic also has a Mayo Clinic Care Network of associated hospitals that also provide excellent care. Here is the page with more information and a number you can call to find out more - https://www.mayoclinic.org/about-mayo-clinic/care-network/members.
Also, if you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
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