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No Doctor can figure out what is wrong with me
Infectious Diseases | Last Active: Feb 14 8:15pm | Replies (34)Comment receiving replies
Dryness of mucus membranes; eyes, throat, with muscle pain to me makes me think of showgrins. But also there are HUNDREDS of types of arthritis. Have you seen a genetic counsellor?
I recommend studying human anatomy and physiology as much as possible to track down leads for them to follow. Doctors are so overworked they don’t have time to treat us holistically. I have a lot of similar experiences. For me tho I don’t relate to the trunk numbness but I get numbness. Got tested for MS but all my scans come back fine and all my blood tests are within normal range.
For shitty hair I always think of thyroid and hormones. So much of our oils or lack of are related to hormones; think acne for example.
Take all your blood test results from the last few years and put them in a chart and track the changes. I’m sick of being told my numbers are within normal range if I flare up and notice ok I’m still in the normal range but I just saw a huge spike within that range at the same time as I feel ________. Doctors don’t track everything we think, and they also know very little outside of their speciality and sometimes they’re so busy they don’t even know the recent research theories.
Subscribe to medical journals. Learn to interpret studies. Connect with people in your area. Figure out where the gaps in your healthcare are and imagine ways to solve them. We have to go ALL in to get help. We need to work together wherever possible. We are all trying to get help on these isolated islands so we reinvent the wheel every time. I believe in you. I’m so sorry for your experience. No one should experience all that and not get help. I can only imagine how hard it’s been. You can do this, you can figure it out - DONT GIVE UP
Replies to "Dryness of mucus membranes; eyes, throat, with muscle pain to me makes me think of showgrins...."
Thankyou so much for responding!I am sorry that you are going through this as well.I was looking at Sjorgens as well as Mythias Gravis and LEMS.These three autoimmune diseases have many similarities.That is the difficult part is that there are so many autoimmune diseases and so many of them are similar.There are so many people in our Family with Lupus and I already have thyroid disease.The only thing I can think of is that the iron infusion,exercising in the heat and possibly covid set this off.I was so tired from those heavy periods for years and working in Healthcare during Covid it would not have taken much.It was like my whole body shut down and went into permanent fight or flight.I remember years ago before I was diagnosed with Thyroid disease my whole body pretty much shut down too.I know extreme stress can bring all of this on if you have a weak immune system.I just got blood work back and my numbers were high for steatosis,Nash,cholesterol and triglycerides,but I think that probably has to do with weight I put on.I use to exercise all of the time and now I can barely walk.My WBC Esterase was abnormal which could mean autoimmune or possible uti and my complement C3 Serum was elevated which could mean inflammation or infection in the body.I have had so much blood work and so many tests,but they are only finding little things.I am taking another long covid test.I had one through Quest Diagnostics,but apparently there is another one through labcorp that tests for more specific findings.I still have to go through genetic testing.Thankyou so much for letting me know about the podcast and Vectra blood panel.I have never heard of that kind of blood panel before.You are correct about the Doctors.They just don't have time because they have too many patients so you have to pretty much figure it out yourself.I have been trying to do my research.Before I was diagnosed with Thyroid disease I had been to about 15 doctors.Even the Best Doctor at John's Hopkins could not figure it out.Luckily a local doctor listened to me and put me on synthroid.I was better in a couple weeks.
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in reply to @kcalby Yes, I get newsletters from many "reliable" sources. I totally understand that lab tests, which may be "normal" are not "normal" for everyone, and I got into a discussion about this very same thing this week with my PA. Yes, the results are "abnormally high" but they are still "normal." I give up. Not literally. I faithfully attend my medical appointments, knowing full well I will never be given the correct response, and I accept this.
I am far from giving up or giving in. However, I have given up any hope of getting a diagnosis, and I accept this.