Seeking Help for Unknown Medical Issue

@chris47 Wow, I love your strong determination! I keep trying to talk to myself and say the same thing, but I haven’t been very successful.
Do you remember the name of the show?

The show was New Amsterdam and it was a conversation between the Psychologist character and a woman patient who had recovered from cancer that was complaining about her family members who had recognized her talents while ill, but now had regressed back to expecting her to fall back into her role as their mother. This discussion with this patient, triggered the gay MD to realize that his male partner relationship was based on the partner controlling him and his anxieties and not loving him for the person he was. Once he fully realized the basis for his partner’s intentions, he ended their relationship.

Comment: This episode was the last of the season so it clearly was compressed to add to its drama. But it reminded me of the recommendation I gave a friend. She was a highly successful business woman who was struggling with the possibility that she had ovarian cancer and dealing with her traditionalist husband who expected her to maintain their relationship of putting his needs first. Finally after multiple late night phone conversations, my final recommendation to her was ‘Divorce Him!’ She was angry with that recommendation and stopped calling me. But I learned later that she had in fact divorced him and eventually found a partner who loved her for the person she was.
Chris47
PS - My approach toward that friend was based on my upbringing as a Quaker and their 200 year old treatment of women as equals. My current break away from my multiple autoimmune diseases ‘partnership’ came as a result of understanding that my damaged body’s demands need to be addressed but also secondary to my goals and abilities - which had become secondary to my medical needs. Basically, my body’s multiple autoimmune needs are not going to change significantly and an emphasis on my emotional and intellectual needs will not change that reality. But it will
definitely make me feel better and hopefully allow me to obtain many of the goals that I have had all my life!

@chris47 I really like this. It will give me some determination to try quilting again. Before my autoimmune disease, i was an excellent (if i do say so) quilter, but it all evaporated. I’m going to try thinking your way and get busy! Thank you! Becky

Becky -
Being creative is very important and has been a guiding force at the heart of my medical management, but more importantly at my intellectual well being too!

Be it as small as learning how to wash clothes so that my underwear does not turn pink. Or singled handedly build and install a large shed door.

Or figuring out how my medical dots are connected!

Or writing a new business plans for a large corporation.

All have one thing in common - they were all driven by a joy in creating work arounds to solve a specific problem - be it not having to wear pink underwear to making the financial argument for a new business model for a company stuck in 1950’s business practices.
Chris47 -

I see you said she most likely has myeloma, why that? I was diagnosed with smoldering MGUS in 2005 in a routine lab, and see the cancer Dr every yr for labs, but so far numbers are fine. Other places I lived I saw a cancer Dr twice yearly. But I have so many other problema, like lupus that's not been active around 2006. Yrly see rheumatologist.
Also sjogrens, lip biopsy it's my primary disease not the ms. Because sjogrens can rupture the organs. I have had so many tests, unbelievable. Not ever been depressed.

I knew I had ms, I looked for 16 years. I have every symptom mainly falling. I have used a walker for over 22_years. But it has calmed down. I finally found a Dr after asking a woman with progressive ms, & saw him for 8 yrs. He diagnosed it even though my MRI was normal, he said you can still have ms. When I moved out of state I looked him up & found out he died of cancer in 2011, heartbroken! Found out he was world famous in adult MS & children's neuro diseases. I never knew. He wrote papers & discovered something about the MS that was new around 1999. I loved him, he was so nice. My family Dr first told me she said I think you have ms. I couldn't believe it, then ordered an mri. I think it was my eyes, not sure what she saw. But then I found him at the largest MS clinic in Mi. You just have to do your research online. I found him in 2000. I knew I had the sjogrens, it took 6 months of telling the rheumatologist I wanted a lip biopsy, he called me at 7:30 pm to apologize yes I had it.

Have they checked for PMR or Giant cell Arteritis. I had log covid and a regeneron infusion then a vaccination and have had severe pain in hip ,shoulders feet ,hand etc. Also e c periencing severe headaches different from my migraines along with eye sight nlurry at times and intermittent jaw pain. Have been on prednisone for about 6 months and cannot get below 15 mgs. I would definitely be checked for this, my Dr said I was 4th patient of his to contract PMR after having vaccination and he has a small practice. Good luck

Hello Amy,

I feel for you as I have been through this no-man’s-land of diagnosis.

I know this is not about me but by outlining some of my experience may trigger in you or another reader something which may prove useful.

2006 - I had a dreadful cough for eight months eventually hospitalised and treated for Mycoplasma Pneumonia (a Molliute not a virus).

2007 - 3rd August became very ill with disparate symptoms mostly neurological (extreme fatigue, balance issues, nausea, fasciculations, lancinating pain, electric currents in feet, word confusion etc etc). Bed ridden for four months.

Numerous blood tests (including ANA’s), brain MRI, EMG and nerve conduction tests performed, all NAD.

Early 2008, Developed severe Gastroparesis (diagnosed with gastric scintigraphy) and gut dysmotility. Could tolerate a liquid diet only for four years.

Mid 2008 - cough returned. ANA’s repeated again all seronegative. Diagnosed with bilateral Bronchiectasis with an HRCT scan.

Over the next four years, fatigue gradually improved. One good day in fourteen then one good day in ten. Then eventually the numbers reversed to become one day every fourteen was a bad one, so that was a blessing.

Through these years I just knew there had to be an ‘overall’ diagnosis but everything was divided into seemingly mini-diagnoses. Fortunately I saw various specialists (neurologists, rheumatologists, endocrinologists, pulmonologists) and received treatment for each of these ‘mini-diagnoses’ such as Beta blockers for the POTS, Domperidone for the Gastroparesis, Lyrica for the Peripheral neuropathy, Pain meds for the extreme muscle and joint pain. This made life tolerable even though I just knew, because of the timelines, that they all had to be connected in some way.

2015 - by now it was eight years since developing all these ‘symptoms’. One day I went into my new GP doctor and asked her to repeat my ANA’s, anti dsDNA, anti Ro’s, La’s etc. etc. She questioned why and I laid out my current and past eight years of symptoms. The doctor agreed, then called me back a few days later needing to ‘talk to me’.

At last I had become SEROPOSITIVE for Sjögrens Syndrome.

At last I was believed and taken seriously, although I was ‘lucky’ in that some testing was positive along the way (as previously explained).

Interestingly dry eyes and dry mucous membranes/mouth are usually the preeminent symptoms associated with Sjögrens, however for me, neurological symptoms were my initial and by far the most life altering symptoms.

Post viral and post infectious syndromes such as ME/CFS can certainly occur after EBV and potentially any viral infection, such as Covid.

I’m reluctant to say though, best of luck being believed by the medical profession as the weeks, months and years go by without quantitative proof of aberrant pathology. This seems to be many people’s experience.

I hope something either shows up for you eventually in testing or better still, everything goes away!

I think is side effects from the vaccine, not safe

It took a lot for you to write out your medical history and I for one appreciate that you did so in order to try to help others.

To Amy I want to say I’m sorry for all that you have and are going through. It’s just awful what we have to go through while trying to get diagnosed and treated. I don’t want here to speak about my experience with Sjogrens, RA or Lupus but to shine some light on your covid experience by sharing a little of what happened in October of 2020 with my daughter. Many many people are surviving that horrible disease physically but mentally and emotionally not so much it’s taking a terrible tole on them and we try to move on and don’t realize what it is still doing to us. My daughter got covid the second time that October and was very ill in and out of ER for a week. Finally on a Friday night her husband had to drop her off (remember family could not stay with them) and she was put in a medically induced coma on a ventilator for 23 days. She remembers everything that went on. She was stuck in that state of being she thought for the rest of her life. Hearing everything that was being said around her. All of the people that came in and out around her died but her. We know this for sure not time here to tell how. We are a family that believes in therapy she got in therapy immediately and is still working to some extent on the now PTSD diagnoses. I only wanted to share this because I totally believe that covid has literally devastated us in more ways and it is far reaching. My daughter is a blessed one because she isn’t holding in all the pain grief anger sadness and on and on. If it doesn’t come out in a healthy way it will come out in an unhealthy way and we deserve better. Don’t we. All of us have been through enough trauma trying to deal daily and to get diagnosed. Please forgive the length. Diane.