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Sjogren's Syndrome Support

Hi there, Edou from Hong Kong. Welcome to the community!


#1

@SSJollof

Hi there, Edou

My name is Danielle and I am a Ben’s Friends intern. I wanted to take a moment to welcome you to Sjogren’s Syndrome Support.

I understand that you were recently diagnosed with Sjogren’s Syndrome, Rheumatoid Arthritis, and Fibromyalgia. I am so sorry to hear that you have dealt with asthma and a dislocated shoulder, as if the other issues are not enough to deal with. How did your most recent appointment with a rheumatologist go? How are you feeling today?

If you have looked around the site, you might have discovered the search icon (magnifying glass, top right). This is what I use to browse through existing topics. I always encourage new members to create their own discussion posts as well by clicking the + New Topic tab. This is one of the best ways to share your story and ask new questions.

Hope to hear from you soon,

Danielle


#2

Dear Danielle,

Thank you for your preply. I wasn’t having worries after the diagnosys but my Doctor isn’t as attentive as I would have hoped for. He flips thru his text messages while listneing to me or talking (with every notification form his gadget). That was two months earlier.

The medicines he gave caused me total pain in my upper jaw, teeth and gums. inner Ears got inflated too. I stayed with the pains without pain medicatin but only anti-inflamation (and a nerve medicine because of the football traumer injuries).

He’s changed the medicine (celebrex which I read should be gradually discontinued) to 4 pills weekly Methotrexate 2.5mg tablet. This medicine is causing so much pain after 5 hours of sleep at body areas that never ached before.

I am worried he intends to induce severe symptoms in me for his own financial gain as a serious case (and long term patient) whereas my intial SS symptoms were:
1- dry mouth (excessively) followed three weeks later by
2- jaw pain (which I think was brought about by the Celebrex capsul’s side effects)
3- stiff left thumb. Mild inflation on my right index finger. both I had 4 months prior.

I read everywhere there are certain food /things that aggrevates symptoms but he’s been teling me I can eat anything (asked twice the past two months and he gives same answer).

I am worried if to stay with him or not.

My Rheumatoid athrititis
Troponin T (TnT) is <14
Rheumatoid factor 24.5
Disease actitivity score: at 4

I am lost right now cause more questioning about my concerns can be seen as a challenge.


#3

I’d consider someone well versed in Sjogren’s. And Never put up with a doc scrolling through his phone while in the room with you. That’s beyond disrespectful and he isn’t listening to a thing you say.
An yes, my rheumy has outlined things that help to keep down inflammation. Diet does make a difference.


#4

Thank you dear,

He’s Rheumatologist. I thought they also cover Sjogren’s. But giving attention is primary requirement regardless of relation/ sector service. I’m glad I noted the lacking of it in him in our first encounters.

He’s the only specialist in RA in that hospital (private and expensive.
Their reports (MRI, Scans and blood tests) are dispatched much faster than other private clinics that take a week. I’d finish an MRI and find another DR mosdef.

We’re trying Methotrexate (from this week) to treat the Rheumatoid Arthrititis and Sjogren’s S. Will helve the dose next week cause 10mg was breaking me down with pains in areas that never give pains before I started these medicine (methotrexate & Folic acid).


#5

I’m sorry you are going through that. I have been lucky so far that Plaquenil is holding things fairly steady. I haven’t needed to go to methotrexate, thankfully.
I totally get appreciating fast results to tests. LOL.
Nice to meet you though. Please keep us posted on how things are going!


#6

Hi Edou,

Great to hear from you.

I am sorry to hear that your doctor has not been especially attentive or empathetic. How awful that he seems more interested in viewing his messages. That is truly unacceptable.

I cannot be sure of why your doctor prescribed the medication he did, but it sounds like it is worsening rather than reducing your discomfort. If you are worried about your doctor’s motives and integrity, I wonder if you would consider meeting with another healthcare professional. I think there is a lot of value in getting a second opinion, and you should not leave medical appointments feeling unheard or disregarded.

How are you feeling today? Have things improved since we last communicated?

Danielle