Round and round

[NanaCC179]

had last O treatment end of June. I have been sick since 3 rounds of upper respiratory which has turned to pneumonia I can’t get out of this cycle. Supposed to see ms dr tomorrow to discuss pushing O back to 6 months I’ve been on 5 month. X-ray showed Mass on lungs which is either pneumonia or the big C. I am at er because meds for pneumonia aren’t touching me, primary wants me to get iv antibiotics. Worse yet a biopsy of lung. How do I navigate crap gap, my head is spinning. Suggestions welcomed

[DM0329]

I'm sorry you're dealing with such stressful and physical reactions to Ocrevus. I was leary to even try it but I know it's the "gold standard" in MS treatments.

I'm "lucky" as I was dx at age 26; started Avonex at age 29 and continued it until March 2022. I switched to Aubagio in March 2022. My first year of Menopause and after 25 years of intra-muscular injections, I had horrible needle fatigue.

Aubagio; I love the once a day pill simplicity, but the hair thinning and loss along with the hair thinning that comes along with Menopause, my hair is looks "quite old" and "sick" but I have lots of hats. Adapt, right?

I just wanted to say to hang in there. Don't let this MonSter get the best of you. I know drugs are the best option, but as my late mother would say, if the disease doesn't get you the medication will (she had rhematic fever as a child and wasn't supposed to live past age 12 due to the damage to her heart). But, she lived until age 63. She was on tons of cardiac medications for years.

Then she developed breast cancer. After her lumpectomy and radiation she developed type two diabetes. Lipitor (for her high cholesterol with her heart medications) had been known to cause health problems too. She took that for years.

She started on a Type 2 Diabetes medication (I can't recall the name) but it was found to cause increased stroke risk (and she had a valve replacement in 1986 to repair the damaged heart valve from her rhematic fever as a child).

Ultimately, the diabetes medication caused a major stroke two weeks after her 63rd birthday. Yes; she wasn't supposed to live past the age of 12. But she overcame all those odds to have to be on a boatload of cardiac medications, and then breast cancer, and then diabetes, etc. Yes; the drugs ultimately killed her, but how long would she have lived without them?

It's a tough choice. Everyone needs more palliative care too with chronic progressive diseases. I have empathy for your situation. I am sending you positive energy and cyber hugs. Please try to focus on the "end in mind" keeping your MS as stable or as less active as possible. The "means to achieve that end" (Ocrevus) can sometimes deplete our body, but I hope that our soul remains unscathed.

Blessings to you. 😇🙏🤗😽

[goatgal]

Oh gosh. You don't need this piled on you, not now, not at any time. All I can do is tell you I'm thinking of you, wishing I were there to help in any way possible, holding you in the Light, and sending big virtual hugs, tea and a slice of pumpkin bread.

[ahrogers]

I would focus on recovery from pneumonia as that is making you feel poorly I am sure. Praying the lung spot is just pneumonia but if it is the C word just know it is possible to cure if they found it early enough, which I am guessing they did. Having pneumonia may have saved your life by finding it early!Keep us updated, please.

🙏🙏🙏

[Tazmanian]

So sorry

[kdali]

No idea where I read this, but someone out there gets steroids to manage crap gap. I have also read of people increasing their meds for fatigue during this time. This could probably be its own thread "how do you manage crap gap?", because many experience it.

I hope your pneumonia is treated well and quickly! 🙏 I'm sorry to hear you have been sick for so long 😞

[AquaZumbaFan]

Hoping your pneumonia just needed iv antibiotics, iv steroids they are probably giving you good breathing treatments as well.. get better and have another scan.. possibly your doctor can do a pet CT before the lung biopsy to see if it comes back as a “hotspot.”. this is often done if patient needs to know whether or not the biopsy is necessary. Sending good healing thoughts and best of luck!