Multiple autoimmune conditions and too many meds

Posted by t2swim09 @t2swim09, Aug 20, 2022

I an a 60 yr old female with out any underlying medical problems (diabetes, heart problems, high, cholesterol etc)
I was diagnosed and treated with early stage Melanoma in 2004, treated by surgery with clean margins downbtobtje fascia.
I 2005 I was diagnosed with Crohns disease, no one else in the family has it although we believe my deceased grandmother (1961) that was raised in an orphanage was of German/Jewish decent. She passed from ovarian/stomach cancer at the agebof 48.
Moving forward I then was diagnosed with rheumatoid arthritis, then, Then got a P.E. out of no where and was diagnosed with antiphospholipid antibody syndrome (a clotting disorder) then Fuch's corneal dystrophy (had to have both corneas replaced in 2019, and Idiopathic Intracranial hypertension (where the cerebral spinal fluid builds up in my skull and causes severe migraines, memory and Word recollection problems, balance issues, vision disturbance(this can make you blind due to the optic nerve swelling and is irreversible) gait disturbance( I fall all of the time and fatigue. Usually they put a shunt in your brain to drain the excess fluid but bc of my clotting disorder an Crohns not a candidate (I was seen at John's Hopkins)
Is there any ONE doctor that specializes in auto immune diseases that i could see? I have to take 26 pills a day and know a I am having difficulty swallowing, food and pills are getting stuckninmy esophagus so I'm basically on liquids and have lost 40 lbs in less than a year .

Does anyone know of any such Doctor that will take on all auto-immune diseases/disorders and try to reduce the amount of medication on. Cause and effect! I don't know if all of the drugs are helping or hurting me!

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gillysmom | @gillysmom | Aug 28, 2022

A friend has been recently using Cymbalta to treat years of neuropathy, and for the first time in decades says she feels relief. She passed on her good news to three friends suffering frm arthritis who were also experiencing significant relief.

jilliemo12345 | @jilliemo12345 | Aug 28, 2022

Hi, I can sympathize with you after coughing for months I was diagnosed with ILD (lung) AFIB, and finally the root of all, RA rheumatoid arthritis!
I understand your frustration, It seems that we aren’t heard by some of the medical professionals.
I am fortunate to have a good team now. I encourage you to seek second opinions and if you can see a specialist at the Mayo Clinic.
I have a suggestion for swallowing pills, take a sip of water place pill in you mouth take another sip turn your head to the right and swallow. It work for me and for many others I taught this to. I hope you find a great doctor. Best Jilly❤️

chris47 | @chris47 | Aug 29, 2022

Jilliemo -
As an advanced Celiac Disease sufferer of 40 years and with 10+ autoimmune symptomologies I can sympathize with your situation!

There are not many matches between your list of symptoms and mine. But there is an absolute agreement about finding an MD that can deal with multiple symptoms.

That said, I was very lucky to find a GP that specialized in Allergy patients AND was always looking for the causes and not just treating the symptoms.

That said, I do have a few questions.
- have you been tested for your vitamin B12? Gut damage can dramatically limit your ability to absorb B12.
- are you regularly tested for CRP or CReactive protein a good indicator of inflamation. Regular B12 injestions can dramatically reduce inflammation.
- have you been tested for a symptomology called Histamine Intolerance? Leaky gut conditions caused by gut damage can limit the body’s ability to produce its powerful natural antihistamine called DAO or diamine oxidase.
- finally have you been tested for Adrenal Fatigue? High histamine levels can over stress the Adrenal’s ability to produce hormones Cortisol and AldoSterone. Cortisol is an anti inflammatory and Aldosterone controls sodium that helps maintain body water content and it’s vital availability for proper nerve function.
Unfortunately none of these tests will provide a cure for your AI symptoms, but they can point the way toward a set of tools that you can utilize to better manage your causes.
Chris47 -
PS - if you are not already gluten free, strongly suggest that you do so - and that applies to your food and medicines!!! For food check labels and try organic foods. For meds find a local Compounding Pharmacy that you can work with to provide you technical meds ingredients without any additives.