New Member... possibly. In need of an expert in the field.

[Gab122]

HI Hope,
I just read your whole journey on this thread. I'm new here. How did your July appt go? I'm hoping you are feeling better!
Gabrielle

[Hope003]

Hiya Gabrielle,

The appointment didn't go well. I ended up in the hospital from exhaustion, we think. Dr. Specks is very nice but he did say we did not have any unifying answers because all my blood work came back normal. The same thing happened here in New York. The lung doc said it was my heart, and the heart doc said it was my lungs. Then a Rheumy was involved because I had a positive ANCA and sed rate and all the other tests were elevated.

The doctors at the Mayo Clinic said my case is very complex and unclear. I was there a little over two weeks and they took blood that first Monday. All the test for vasculitis and Lupus and I honestly don't know what else they tested me for but Dr. Specks told me I should be reassured because none of the tests were positive.
He sent me to the EP - heart doc, who told me my heart is weakening but he admitted it has nothing to do with why I keep getting pleurisy and coughing up blood, beside all the other symptoms. I was really frustrated but Dr. Specks told me to be reassured I was fine. I was feeling horrible and so discouraged but I did listen to him. I thought, maybe the tests in NY were wrong and this is the Mayo Clinic! Turns out the EP doc sent me to a Rhemy, who decided to do more blood and then they sent me home. I wake up Monday, at home in New York to find out my blood work is now abnormal again! And they never even called to let me know. That really annoyed me. I know I'm a difficult case but at least call the patient and let them know what's going on.

I didn't bother calling them because I was told again and again, how complex my case is. Then I even asked if the blood work could fluctuate and Dr. Specks said no.
Several docs did not give me correct information and their consults notes on me are wrong as well. I sat here wondering, how in the world they're considered the best. They put things in the consult I never even said! And all my records I sent and brought, well they didn't look those over either. The only reason I know this is because the doctor order a sleep test for me and after I had it, he told me it was abnormal. I explained I already had two sleep test that are abnormal and I had told him that already! I personally handed it to Dr. Specks on my first day there! He asked me if I was sure I gave it to him and just went on to something else. I made the mistake of expecting an answer, treatment, or just some help. The lung doc blamed my heart. The heart doc said autoimmune. The Rhemy tried to tell me I had fibromyalgia and by this time... I was cooked! Ohh, and the neuro-Optho said I was fine! LOL And I'm still seeing double and my eye is still hurting and Jerking uncontrollably... and they call this normal! I'm editing this just in case anyone may have some helpful info. So my ANA came back high, Hep 2, came back high. My iron, ferritin and Vit D is low and I'm anemic. The results for the ANA read: cells look heterogenous, consistent with lupus and the second read few dots... cells look PBS - Primary bilary cirrhosis. I have been complaining of liver pain and back pain for a year now. A sono showed my bile duct was enlarged but I was told it's nothing to worry about, my liver enzymes are fine. I went back to my Rhemy here in NY and he read all the reports and said we are no further along. I asked what I could do to help myself and he said to stay out of the sun. I was stunned, and thought the sun was good because my Vit D is low. He asked if I feel tired when I'm in the sun or after a hot shower. Yes! He mentioned lupus but said it's just not clear yet. No diagnosis but will continue to treat me with steroids as needed.

Gabrielle, truly, thank you for asking and sorry for the rant! It's been a tough few months. So... How are you doing?

Hope

[Gab122]

Hi Hope,

I'm soo soo sorry you aren't getting any answers and yet having so many symptoms!!! That's truly frustrating and discouraging!

I wish I had some answer to give you medically. Some clue... some rock to look under.

All I can say, all I have to give you, is what is so helpful to me personally. That is: I'm certain that in the midst of all of this, God is with you and completely loving you. That may sound crazy to most. Maybe it's too religious to post? I don't mean to belittle what you are going through. It sounds incredibly difficult. For me the deepest reality, (deeper than my GPA or its treatments or my future, or the impact on my child ... ) is that God is Love. When I hold onto that, it helps me. It brings me peace. I entrust myself to God. I don't mean that you need to be brave and strong. I'm just sharing that bringing my doubts and suffering before God, and putting my trust in Him helps me.

I will be praying for you that your NY Rheumy doc be inspired and enlightened as to how best to help you in a way that leads to a confirmed diagnosis and helpful treatment for ALL of your symptoms.

As for me: my journey is posted in this link below. Symptomatically I'm improving on the meds and ritux. I still have some breathing, sinus and ear issues but they are all slowly improving. I have med side-effects but I know it's part of the treatment.

https://r.tapatalk.com/shareLink?url...4&share_type=t

Praying for you for answers and helpful treatments and sending (((hugs)))

Gabrielle

[Hope003]

Hey Gab!

I feel like we've been friends for a long time! How funny is that but when I read your post my smile went ear to ear! Possibly wider!!!
Your words were truly encouraging! Hey Gab, Jesus is the only reason I'm still walking around! Each time the doctors tell me I shouldn't be here I chuckle and point upward. "Well... I think HE has something to do with my still being here!" God is Good!

I'm on disability due to my heart condition and couldn't afford the trip. My church family came around me and then my sister with a go fund me page! God made that all possible! He laid the groundwork for me and I'm still amazed and in awe! He is Amazing! I don't want to come off like the Mayo Clinic didn't help me, they certainly did. And there was a reason God made this trip possible for me too. The doctors here in NY wanted to give me Rituxan. Dr. Specks said it may have killed me. He said it is contraindicated in people with arrhythmias and HF and disease like I have. But... I was too busy wanting help. An answer. Something. And I lost my focus and became discouraged. I just couldn't see how God just saved my life! I was too busy looking for my cure, my answer! And there's so much more! All good that the Mayo Clinic helped me to understand. Dr. Specks said from day one, "We may not be able to diagnose you." So he did warn me and so did Dr. Spiera and so did my Cardiologist. Hey, I'm God's mystery!

And while I was there, I did get to tell all the doctors and nurses and techs, the ambulance driver, the people at the hotel, some other patients I met and the maid who took care of our room... I got to share how God used my church family and my sister and some people on facebook, who I didn't even know! How God made it all possible... because the love coming at me was extraordinary! It was like nothing I have ever experience in my entire life! I was so overwhelmed and so humbled by the love of strangers! I knew it was God at work! It was His agape love that just surrounded me and covered me and kept me standing at every turn! I'm so blessed and I'm so thankful to God! It was a beautiful testimony God gave me to share with so many, of His amazing love!

So thank you Gab, fo being Jesus' hands and feet to me! I'm still smiling and I may not know what tomorrow holds but... I know who holds tomorrow.

I thank everyone here for all their love, prayers and support! I thank God for each and every one of you and I pray, He gives you comfort and His peace that surpasses all our understanding. I pray He gives each of you a double blessing, for the beautiful blessing you have all been to me! Amen!

Thank you for loving me!

Forever Hopeful!

PS. Gab I borrowed your huggies! Hehehe!

[Gab122]

Huggies for everyone!

[drz]

I felt bad reading your post in that you did not get the answers you wished for. I understand your frustration about the doctors not agreeing about things as I experienced that in my treatment and it was a full time job for my daughter to help the doctors sort out their conflicting recommendations during my intense treatment as it was often difficult to get any consensus. The interesting thing to me was the final say on conflicting recommendations was a third year resident who ran the ward i was on and not any of the recognized specialists. The resident did listen to my daughter's recommendations since she was my health care director but the resident and only him or her wrote all the orders for my treatment.

Your case is the kind Mayo often gets and they generally enjoy the challenge. I do know that some times doctors don't get all the info down correctly. Often they don't dictate their notes right away and some times they don't hear what we said or some times what we meant to say.

I wish you had a clearer path to better health and wonder where this long consultation leaves you now. What does the doctor think now who recommended Mayo? Is there another expert he suggests you see or other tests and monitoring they can do now that some things have been been ruled out or clarified. John Hopkins, Cleveland or some big university clinic looking for a challenging teaching case?

I wonder if Specks was aware of your last test results. maybe those abnormal test results might change their analysis about what is wrong with you? Could your referring doctor cal him and discuss your case and ask for his recommendations now for further care and monitoring?