Doctors are confusing sometimes

[Ditto]

What a relief that they got good samples and that this part is behind you.  Hoping answers come quickly and treatment is started very very soon.

[Catwoman]

I'm glad to hear the surgery is behind you, and I'm hoping for definitive answers and a solid treatment plan to get you BETTER!!!

[mom31257]

I'm so glad that is done, and I pray that a treatment plan can begin very soon!!! 

Thank you for keeping us updated!  

[Melissa in Australia]

Couple of days 

[Catwoman]

8 hours ago, Melissa in Australia said:

Couple of days 

Waiting for results is always so difficult, but it’s even worse when you’re already in the hospital because it’s harder to find distractions than when you’re waiting at home. 😞 

[ktgrok]

How is your breathing? O2 saturation? Any other lab abnormalities like anemia or anything that are impacting fatigue? Or just from the (presumed) lymphoma itself? I know fatigue is a big symptom for lymphoma. I guess you don't have to answer that, I'm just wishing there was a way to help you have less fatigue. 

[Melissa in Australia]

Just got the results. It is sarcoid, but the most severe version. 

Just saw my new doctor. He said good it isn't cancer but it is still a serious desease. He said he will be back first thing in the morning. Treatment will be complicated aparently. He will tell me in morning as he has to study all the tests I have had over the past few weeks

[Acorn]

I am glad you have results and hope that you can begin a treatment plan to ease your symptoms. Hugs and best wishes for fast healing.

[popmom]

Goodness! I’m so glad you finally know! Thank you for updating. I will keep praying for a good response to a good treatment plan. 

[bookbard]

1 hour ago, Melissa in Australia said:

Just saw my new doctor. He said good it isn't cancer but it is still a serious desease. He said he will be back first thing in the morning. Treatment will be complicated aparently. He will tell me in morning as he has to study all the tests I have had over the past few weeks

I am so glad you have finally received a diagnosis! It sounds like you're in the right place at this hospital and you've got a doctor committed to helping you. All the best for the upcoming treatment, I hope it makes you feel better soon. 

[LifeLovePassion]

Thankful you have an answer and can begin healing. 

[Laura Corin]

I'm so glad you have an answer and knowledgeable care.

[Ausmumof3]

Im so glad you have an answer. I think I’m glad for you it’s not cancer though I don’t know enough about sarcoid to know. I hope you are able to start treatment quickly.

[Kanin]

Wow, finally an answer! I've been reading this thread and feeling just so miserable for you. A quick google search said that swelling and pain in the ankles is a symptom... wasn't that one of the first things that happened to you, that the doctor didn't check?

Phew. Fingers crossed that treatment starts making you feel more energetic really soon.

[Melissa in Australia]

Yes

[ScoutTN]

Praying for excellent treatment and good recovery!!

[Ditto]

So thankful you finally have answers and a solid diagnosis.  Praying treatment starts soon and is very successful.  

[Kassia]

I'm so glad you finally have a diagnosis and it seems like your doctor will be very thorough.  Hope treatment starts very soon and you start feeling better.  Sending hugs.

[Faith-manor]

Wow! I am so glad you finally know what it is, and they are developing a plan. It has been such a long road. I hope you feel so much better soon. If this helps, anecdotally, I had a boss once who developed sarcoid, a very bad case of it, and they were able to treat it, and he did recover and go on with a normal life. That was over fifteen years ago, so I have no doubt they have better treatments now or at least enough research and information to make treatment more efficient.

Many hugs, Melissa.

[mom31257]

So glad you finally know that it isn't cancer! Praying for a clear path to the best treatment to help you recover quickly! Hugs! 

[cintinative]

Grateful that they finally know what you are battling. Praying for effective treatment to begin as soon as possible and for returning strength.  

[Spryte]

So glad that you have an answer. And hopeful they will make a solid treatment plan, and that you feel better soon.

[mominco]

So glad you finally received a diagnosis(((hugs)))

[Innisfree]

I’m so happy there’s finally a diagnosis, so they can start helping you get better. And it’s wonderful to know it’s not cancer. I hope the treatment plan helps you feel stronger soon.

[Corraleno]

I'm so glad you have a definitive diagnosis (and that it is not lymphoma)!

Have you had your Vit D levels checked recently? A 2020 article on "The Role of Vitamin D in Sarcoidosis" discusses several studies showing "an inverse relationship between the level of vitamin D and severity of sarcoidosis." They discuss the role Vit D plays in sarcoidosis and state that although some clinicians are reluctant to treat sarcoidosis patients with Vit D due to concerns about hypercalcemia, studies show that "sarcoidosis patients with vitamin D insufficiency do not seem to be at a higher risk of developing hypercalcemia than other patients commonly administered vitamin D." They conclude that "the study showing that repletion of 25-(OH)D may reverse some underlying pathophysiological abnormalities was compelling; the associated lowering of serum angiotensin-converting enzyme (ACE) and serum γ-globulin, both surrogate markers of active sarcoidosis, supports the suppression of granulomatous immune activity."  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7886067/#:~:text=Repletion of vitamin D in,-(OH)2D12.

Edited August 24, 2023 by Corraleno
link

[freesia]

Wow! What a relief to get a diagnosis! I hope you respond quickly to treatment. 

[WildflowerMom]

I’m so glad you have an answer!    Now, treatment so you can get back home with your family!  💛

[Hannah]

I'm relieved for you Melissa that you have a diagnosis.  It has been such a long ordeal.  Hopefully now things will speed up and you will start feeling better really soon!!

 

[prairiewindmomma]

I'm glad you have a diagnosis, I'm sorry it's not an easy one.

The standard treatment for sarcoidosis uses the same drugs that they do in rheumatoid arthritis: TNF blockers, antimalarials like Plaquenil, methotrexate, and steroids.  When I was new to those medications, Chris in VA from here on the boards gave me the most comforting advice: know that there are thousands of people, like me, who have been on these drugs for decades and have had a good life. I think she'd been on them for 25-30 years at that point.  I haven't seen Chris around for a bit, but her advice to me was long enough ago that I can add my own voice in saying the same thing. 

I'll add two bits of my own advice: if methotrexate pills tear up your gut, take the injectable version instead. Second, push for pulmonary rehab and physical therapy once you are stable.  Exercise helps you use oxygen more effectively, and keeping muscle tone in your body improves quality of life. 

[Catwoman]

7 hours ago, Ausmumof3 said:

Im so glad you have an answer. I think I’m glad for you it’s not cancer though I don’t know enough about sarcoid to know. I hope you are able to start treatment quickly.

Same here! I'm very relieved it's not cancer, but I don't know enough about sarcoid to know how difficult the treatments will be.

I'm so glad you finally have a diagnosis. At least now you know exactly what you're fighting and will be able to get started on the treatments on your way to getting well again!!!

[Melissa in Australia]

I don't know much about sarcoid either. Only what I googled. I had never heard of it before getting this illness

[Melissa in Australia]

My vitamin D levels are very high 

[ktgrok]

It is an autoimmune disease, so treated with many of the same drugs as other autoimmune diseases. Interestingly, like other AI diseases it can be triggered by an infection - so it is possible when your son was sick you were infected and your body overreacted and triggered it. But it's impossible to know what the trigger was for sure. 

 

[Melissa in Australia]

My son was sick from a prescription overdose misdespensed by the pharmacist. I couldn't have caught it from him. 

[DawnM]

Oh my gosh, my mom had that!  It is extremely rare and not much was known about it in the early days.   It is the reason she couldn't walk for over a year in her 20s, the reason she got into a car accident and never drove again.  It affected a lot of her life.    She was diagnosed in the 1950s!

 I rarely heard many talk about it until that show called House where every time he was trying to figure out the malady of the patient they would go through several possibilities and sarcoidosis knowing that most people have never heard of it and wouldn't notice that it was mentioned almost every single episode as a possibility before they figured out the real diagnosis. 🤣

But my mom did have some major times in her life where it affected her lungs specifically, but also her muscles/dexterity.   She was on prednisone a lot of her years.   It was rough.

[ktgrok]

13 minutes ago, Melissa in Australia said:

My son was sick from a prescription overdose misdespensed by the pharmacist. I couldn't have caught it from him. 

Oh, that's right. I'm sorry! I misremembered. 

6 minutes ago, DawnM said:

 

Oh my gosh, my mom had that!  It is extremely rare and not much was known about it in the early days.   It is the reason she couldn't walk for over a year in her 20s, the reason she got into a car accident and never drove again.  It affected a lot of her life.    She was diagnosed in the 1950s!

 I rarely heard many talk about it until that show called House where every time he was trying to figure out the malady of the patient they would go through several possibilities and sarcoidosis knowing that most people have never heard of it and wouldn't notice that it was mentioned almost every single episode as a possibility before they figured out the real diagnosis. 🤣

But my mom did have some major times in her life where it affected her lungs specifically, but also her muscles/dexterity.   She was on prednisone a lot of her years.   It was rough.

That had to be hard. We have SO many more options for treatment of autoimmune drugs now, but back then yeah, I bet prednisone was one of the only options. 

[Melissa in Australia]

1 hour ago, DawnM said:

 

Oh my gosh, my mom had that!  It is extremely rare and not much was known about it in the early days.   It is the reason she couldn't walk for over a year in her 20s, the reason she got into a car accident and never drove again.  It affected a lot of her life.    She was diagnosed in the 1950s!

 I rarely heard many talk about it until that show called House where every time he was trying to figure out the malady of the patient they would go through several possibilities and sarcoidosis knowing that most people have never heard of it and wouldn't notice that it was mentioned almost every single episode as a possibility before they figured out the real diagnosis. 🤣

But my mom did have some major times in her life where it affected her lungs specifically, but also her muscles/dexterity.   She was on prednisone a lot of her years.   It was rough.

Couldn't walk for a year!😲😞

Thank you for sharing about your mum

[DawnM]

33 minutes ago, Melissa in Australia said:

Couldn't walk for a year!😲😞

Thank you for sharing about your mum

It was before I was born so I really don't have a lot of information about it.  She would talk about it, but not a lot because it was a difficult time in her life.   

She was pretty low energy most of my life and would get out of breath easily.   She napped almost every day.   She got sick easily and it would go to her lungs.   

But she ended up living until just shy of her 89th birthday, so she lived a long life in spite of the disease.

[Melissa in Australia]

Thank you so much Dawn

 

[DawnM]

Just now, Melissa in Australia said:

Thank you so much Dawn

 

Feel free to PM me, not sure I can offer too much, but I did live with it all my life second hand.

[Melissa in Australia]

I have developed a tremor in my right hand/lower arm. It is very shaky. I have to clench something to stop it. 

I am scared

[DawnM]

2 minutes ago, Melissa in Australia said:

I have developed a tremor in my right hand/lower arm. It is very shaky. I have to clench something to stop it. 

I am scared

I can see where that would be scary.   What are they doing to treat the tremors?   Or have they addressed that yet?   I know there can be Parkinson's like manifestations in some people.

[Faith-manor]

5 minutes ago, Melissa in Australia said:

I have developed a tremor in my right hand/lower arm. It is very shaky. I have to clench something to stop it. 

I am scared

Melissa, I wish I was there and could hug you! Please tell the nurse, and just hang on tight. I really think you will feel improvements once they establish the treatment plan.

[Melissa in Australia]

The tremor started 2 days ago. But it is now at the stage where I dropped my phone. And can hardly balance food on a spoon

[Arcadia]

7 minutes ago, Melissa in Australia said:

I have developed a tremor in my right hand/lower arm. It is very shaky. I have to clench something to stop it. 

I am scared

I get those kind of tremors when I am highly stressed and extremely exhausted. Steroids also give me tremors most of the time. For me, electrolyte drinks help so I guess mineral deficiency comes into play for my case. I’m so sorry, would you be able to use your left arm for eating for the time being? 

[Just Kate]

2 hours ago, ktgrok said:

It is an autoimmune disease, so treated with many of the same drugs as other autoimmune diseases. Interestingly, like other AI diseases it can be triggered by an infection - so it is possible when your son was sick you were infected and your body overreacted and triggered it. But it's impossible to know what the trigger was for sure. 

 

I was diagnosed with sarcoidosis in 2021. My local doctor had trouble diagnosing me so I traveled to the Cleveland Clinic and was quickly diagnosed. I met with another doctor a few months after my diagnosis, who is with the Sarcoidosis Center at the Cleveland Clinic. One of my first questions for him was - is sarcoidosis an autoimmune disease and he told me that sarcoidosis is not considered to be an autoimmune disease. I just looked at the Foundation for Sarcoidosis Research website and it supports what my doctor told me. I don’t know how much it matters, but just thought I would share this info here.

I haven’t followed up with my doctor like I should (it is a 4 hour drive to the Cleveland clinic), as I have never had any symptoms. I do think I will call next week and make an appointment though. 
 

[Pawz4me]

I've most often seen sarcoidosis referred to as an "autoimmune related" disease. It seems like the jury is still out on whether it should be classified as AI or not.

Melissa, I don't know if you like hearing anecdotal stories or not. But this is a good one so I'll share -- I know someone from another board (and who is also a FB friend) who was diagnosed many years ago with sarcoidosis. She was quite ill at the time. I no longer remember what treatment she received, but I know that after her initial treatment she's never had any more serious issues with it. I'm hoping for the same for you.

[prairiewindmomma]

About % of people have neuro symptoms/neurosarcoidosis. I’m going to share this link here because it has a good graph of how the brain can be affected:

https://www.sarcoidosisuk.org/information-hub/sarcoidosis-nervous-system/

Edited August 24, 2023 by prairiewindmomma

[DawnM]

10 minutes ago, Pawz4me said:

I've most often seen sarcoidosis referred to as an "autoimmune related" disease. It seems like the jury is still out on whether it should be classified as AI or not.

Melissa, I don't know if you like hearing anecdotal stories or not. But this is a good one so I'll share -- I know someone from another board (and who is also a FB friend) who was diagnosed many years ago with sarcoidosis. She was quite ill at the time. I no longer remember what treatment she received, but I know that after her initial treatment she's never had any more serious issues with it. I'm hoping for the same for you.

Flare ups can come and go too.   

[scbusf]

I have a good friend that has Sarcoidosis. I don't know the details of when she was first diagnosed, but she is living a great life and doesn't have many issues due to it.