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No Doctor can figure out what is wrong with me
I had a one time 1020 mg Iron Infusion after being diagnosed with anemia after 3 years of severe periods.I had a reaction days later and have never been the same.The day I had the reaction it was hot and I had been exercising on the bike trail in the heat the day before.I was also at the Beach a week prior to my reaction.I had the Pfizer vaccines,but it was the first time I let my guard down around people by not wearing a mask. Months after the reaction I ended up losing strength/sensation in the trunk of my body and can barely walk now.At the beginning of my illness I could hardly swallow and had to live off of ensure for months,trouble concentrating where I would have to walk away, dizzy after eating and my breathing was not natural where I feel like it would pause at times.Hair on my head was coming out too.My hair basically ended up fusing together where I had to cut it short.I had long straight hair and it changed into a frizzy texture.Someone that I know that had cancer compared my hair to their hair after they had chemo.It has barely grown since cutting it last year and it does not grow down,but outward.Some of my other symptoms are trouble swallowing,difficulty getting up from a seated position,extreme constipation,not feeling food going down in my belly or signals that I am full,head feels like a bobble head because of loss of strength,severely dry eyes that feel like they are being pushed out of my head and extremely sensitive to sunlight.My smiling,laughing,chewing and swallowing feel like they are in slow motion from lack of strength in my facial muscles.Originally I could not cough,sneeze or yawn.These sensations are slowly coming back,but they are not as productive because of the lack of strength in the trunk of my body.From the research I have done it seems like the vagus nerve controls many of these functions.We have alot of Family members on both sides of the Family with Lupus.I have had several positive ANA's with 1.80 speckled titer,but the rheumatologists tell me it is not Lupus.I have met with Neurologists,Rhuematologists,Endricinologists,GI Doctors,etc.These specialists can not find much of anything.High Epstein barr titters,little things with my spine and neck and a few vitamins on the low side and extreme constipation.I have had an emg,muscle biopsy,Brain mri,neck and spine mri and nothing.I also had a long covid and Lymes test and thise came back negative as well.The only medicine I take is synthroid for thyroid diseases I have had since my 20's.Does anyone have any ideas what this could possibly be?
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Yes!You are correct.When my illness came on I told my Family a typical doctor would probably not be able to figure it out.I know what is going on in my body and what I am dealing with is very unusual.I need to meet with doctors who have seen something similar to what I have.The specialists I have met with are trying to help but a couple of them told me from the beginning that my case was way out of their league because they have not seen anything like it.Hopefully I can get into Mayo Clinic or Hopkins.Thankyou so much!
You are not limited to the Mayo Clinic or Johns Hopkins. What you need to look for is a "teaching hospital", where medical students (called “residents”) learn to be MD’s. All our states probably have at least one teaching hospital.
in reply to @j77 For what it is worth, I just got some labs back, the ones that show all the IGg levels, lambda/kappa ratios etc. They are alarming, as was expected. Knowing I will not get any answers from my doctor until January 8, I found a great non profit, HealthTree, and have given them access to all of my medical records. I will call them after the first of the year and have them explain my lab results to me. The organization has a very good reputation, and I remain hopeful that I will get some very good information. You may want to check it out, if you suspect multiple myeloma or something similar. Peace to you, and love and all that good stuff.
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1 ReactionGood for you. Most academic medical centers not only have fine professional staff, they attract very imaginative and enthusiastic student interns.
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1 ReactionThat is what I need.People who are interested in figuring it out.Thankyou
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1 ReactionThankyou so much!I am going to look into that.I hope you get some answers soon and Happy New Year!
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1 ReactionTry a Naturopath. They actually heal the sick rather than prescribe meds or treat and prolong…
Thankyou for responding!That will be my next step.I keep on having tests run and they just can't find a thing.
I’ll probably get kicked off for saying it but look into Barbara Oneil’s videos. A lot in tiktok. Mainstream wants to keep the money making pharmaceutical industry going but nobody will get better this way. I bet you will find ways to heal. Not a diagnosis necessarily but healing. We were created to heal ourselves if we could just get away from the poison in our food and air…
I completely agree with what you are saying.The problem is that I really think I got hit with covid too and it did such damage to my body.I do not want to take any kind of medicine if I don't need to.I am a very natural person and am trying to do so much research to find out what in the world happened to me.I think it was a perfect storm.Tired from working in Healthcare for years during covid,extremely heavy periods along with anemia,gut problems and I think the iron infusion/possibly covid attacked my whole body including my central nervous system.It is just so weird because it really damaged the trunk of my body I have weakness in my arms and legs,but it is really bad in the trunk.I think because those muscles are so weak it is causing GI issues and difficulties walking because I need that to balance my body.I knew something was wrong when I could not walk on the bike trail anymore.My neck became so stiff and pushed forward along with weakness in my torso made it impossible.I could not even carry my purse or lift a window.It was so weird.I pray I can find someone who can help me.Maybe a naturopath has seen something like this before.The problem with conventional doctors is they won't look outside the box.