Hello Everyone....and Welcome Jamie:
I made my first post on June 26. Then, it looks like I lost interest. But No, I think I just don't have my notification settings set correctly. I am struggling more with cognitive skills the last few days, especially anything new (this forum/any social media is new to me). Just getting to the Clippers: Wanting to Connect thread was a struggle today. So I won’t be fixing my notifications right now, but will check in more often.

UPDATE on my JOURNEY with CLIPPERS:
- I am now on Week #12 of Prednisone (Started @ 60mg, now @ 40 mg).
- I am also on Cellcept...Week #6 (Neurologist added this during my 6th week on Prednisone due to slight increase in symptoms, and NO symptom relief).
- I had an earlier-than-planned visit with my Neurologist on July 8th (instead of August) due to continued increase of symptoms. Outcome of appointment.....
- Good news, my recent MRI and bloodwork do not show anything worse than before, just not any improvement.
- I do still have inflammation in my neck and collar-bone area (earlier ER blew it off as edema/weight gain from Prednisone). My neurologist thinks it is not symmetrical (more puffy on one side). She ordered a CT. I will have that this coming Tuesday, 7/23.
- No changes to meds. Next change will be at 30 day mark, to drop Prednisone down another 10mg. Looking forward to more relief from side-effects.
- Best new….No visual difficulties (diplopia/oscillopsia) since May 28th - Get to drive again!!! Yay!

DAILY SYMPTOMS:
- Pressure in my head/neck (ears feel very plugged, but aren’t - No fluid and ears continue to “look” great. When standing after sitting for 20+ minutes, this feeling increases quite a bit in intensity, then drops back to it’s usual pressure/humming within a minute or so. It hits pretty hard though.
- Constant Burning in my skull
- Pain in my head on days when pressure in head is higher (it varies)
- Lots of low, humming/buzzing (Tinnitus?). Makes it hard to hear.
- Still having balance issues, though NOT dizzy.
- Increase in bladder control difficulties (a couple actual accidents) UGH !! 🙁
- Swallowing difficulties and biting my cheek/tongue when eating.a bit better, or I am just more mindful when eating, not sure?

LAST FEW DAYS …..yucky, but no trip to emergency…..not drinking wine, so I need to WHINE a bit:
Greatly increased pressure (I think from Brain Inflammation, not just head and neck, but into chest….I can still breathe and BP is good. No Temp. No extreme pain. I feel like my arms and legs are made of led and my brain is very foggy. And, today, first time in my life, I have dark circles and puffiness under my eyes. My CT is Tuesday, so I will wait for that, unless any of these things get worse. My husband is keeping an eye on me. — If you sense an aversion to ER, it is because they tend to just want to treat me for headache and send me home. They don’t know CLIPPERS and they don’t get it. I need to get better at explaining what is happening to me.
TRYING MY BEST TO STAY POSITIVE - not feeling like a patient-patient.
Anyone have similar symptoms/experiences?