How do I get help?

Posted by jdombek1019 @jdombek1019, Sep 12 12:51pm

I need to be seen ASAP but don't know what to do. I have been through the ringer with local doctors and specialists who all tell me to go to the Mayo clinic. They tell me the process is simple, I would be admitted, and then see a panel of doctors who will do extensive tests and help me discover what is wrong.
Let me begin with, I am a 40 year old mother of two grown children, 20 and 17. I work in the hearing healthcare field and cannot take much time off due to my being the only provider for my office so taking time off for my health is been an issue. I have saved my vacation for a stay at the Mayo Clinic but that has been an issue.
Last year I woke up with pain in my right arm that radiated up my shoulder. Thought it was a pinched nerve and went to my doctor. She said I needed to see a neurologist as I have a history of MS in my family. I went to the neurologist weeks later and had an MRI, Spinal tap, blood work, and nerve conduction test done. It all came back normal. They referred me to a primary doctor who was a internalist. They could not figure it out either and only did blood work and Ct scan. Then they sent me to my OBGYN as I had a cyst or mass on my remaining ovary. I had it removed and it was attached to my kidney but it was benign. All tests are normal every time I go to the doctor.
My symptoms:
Severe weight loss without intention (over 120 pounds from 240 to 120. Size 20 to a size 2) within 18 months.
Severe chronic pain all over
Generalized neuropathy
Severe fatigue
Muscle Weakness
Insomnia
Brain Fog
Knuckles, knees, back, neck swelling and pain
Severe headaches
Body vibrating and shooting pains
Hands, feet, extremities that turn blue randomly
Burning sensation that flows all over
Vision issues
Stumbling and running into walls
Low heart rate, irratic blood pressure
I am scared because of the rapid unintentional weight loss as I was told by a bariatric doctor that I would never lose weight. I have always been a heavy person. They told me I would have to eat less than 100 calories a day to lose weight. I even tried shots to lose weight without any results. I have not changed my diet or exercise any more than yard or house work.
My family is scared and I feel like I am dying. My doctors all have pushed me onto others. Even my primary doctor asked me "What did I expect from her, she only treats normal things like diabetes or high blood pressure?"
All my tests are normal that they have run. Thyroid, hormones, scans, CBC, CT scans, MRI, spinal tap, Nerve test, ultrasound of the heart. But I am worried they are not sure what to look for or what they are doing.
I have tried 3 times to get an appointment to be seen. They scheduled me with one doctor and then said if they didn't find anything they would schedule me 3 months later with another doctor and so on. I was told that I would be admitted and seen by a panel of doctors all at once to get to the root of things. I am running out of time and money and patience.
Someone please help!!!!!

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emo | @emo | Sep 13 1:42am

In reply to @jdombek1019 "Jacksonville, I live in South Carolina about 8 hours or more away from the location." + (show)

I was also seen at Jacksonville, and I experienced a similar situation. My appointments weren’t coordinated for me. It was also a challenge for me to communicate with Neurology, but I hope that when you’re able to call them, you’ll receive more clarity.

jdombek1019 | @jdombek1019 | Sep 13 6:42am

Thank you all for the support and advice. We aren’t sure what doctor I need to see that is the issue I believe. One doctor says neurology and another doctor says general or internal, another says it could be blood related. I am literally so confused. I have the portal and have been reading all I can for the Mayo Clinic. It definitely has been a hard journey. When your local specialist and primary doctors don’t understand, don’t listen, or are misinformed. I have had to google symptoms just for my primary doctor to order tests and when they come back normal then we have to take 3 steps back. I have lost 30 pounds just in the last 5 months and my mom even said I look like Celine Deion now. It was hard for me to get out of bed this morning the pain is that bad today. This is not only physically draining but mentally also.

emo | @emo | Sep 13 9:24am

In reply to @jdombek1019 "Thank you all for the support and advice. We aren’t sure what doctor I need to..." + (show)

Yeah, it can feel like going around in circles.

One good thing about Mayo is that if you get yourself to the initial appointment regardless of your starting point, there is a culture of understanding that a health condition can be intertwined requiring expertise in multiple stasis at first to rule out diagnoses to get to the diagnoses and then eventually to come up with a treatment plan.

So perhaps if you can focus on getting in communication with the initial department where your initial appointment was to take place and get that scheduled, that will ultimately get things going and you’ll be able to see the other specialists. But if you have all the orders, you can probably get the schedule coordinated. I know it’s a challenge if you have to do the legwork; it’s but a small thing, but the good thing is you’ve got your foot in the door now.

emo | @emo | Sep 13 6:57pm

In reply to @emo "Yeah, it can feel like going around in circles. One good thing about Mayo is that..." + (show)

Eep. @jdombeck1019 FYI, I meant to say, "It's *not* a small thing" to coordinate the appointments. Sorry, that totally changes the tone of the sentence. Wishing you all the best.

walkinggirl | @walkinggirl | Sep 14 10:49pm

Have you had Covid? If so, ask doctors if long Covid can cause these symptoms. Some people react negatively in different ways to the shots. Just adding an idea to your questions to ask.

rozy288 | @rozy288 | Sep 15 9:12am

Took me 8 months to get into Mayo Jacksonville. I was on waitlist 4 months .
Kept having to call 📱 them .
Eventually had televisit then 3 big tests done in 2 days there . Had to get air b&b and paid 4K out of pocket w/ insurance including $800 for staying up at air b&b.
They couldn’t even help me .
The diagnosis 6 of them were same as 4 other Gastro Dr’s .
So it was a waste of time and money .
My newest Gastro ( from a year now ) is 1 hr 15 min away in Orlando. She redid colonoscopy and endoscopy in Mar 2024 . Same results and still nothing has helped . I’m chronic 11 years and suffer every single day. I’ve tried everything.
I have no real life anymore.

I hope you find out what’s wrong .
Praying 🙏 for us both .

jdombek1019 | @jdombek1019 | Sep 15 2:15pm

Hey all, so I have been working with my primary to see if we can get a general consultation together. I have requested a reschedule for the neurologist. I was reviewing my labs and my albumin is high. Something my current neurologist failed to mention. And since he found lesions on the mri I feel this is the starting point. Went for a long walk with my family yesterday and I was stumbling around. Had to take frequent breaks which isn’t like me at all. One day at a time I guess. Hopefully the primary comes through with the referral. And I get an appointment with Mayo for the neurologist

jdombek1019 | @jdombek1019 | Sep 15 2:18pm

In reply to @walkinggirl "Have you had Covid? If so, ask doctors if long Covid can cause these symptoms. Some..." + (show)

I had my first bout of it ever a month ago. So unfortunately my symptoms aren’t from long covid. Even my obgyn tried to tell me it was menopause but I had a complete hysterectomy last year after all the symptoms as a way to treat the symptoms I was having. They found a mass on my ovary which prompted them to remove it and it was attached to my kidney but was benign. Leaving us at square one.