Diagnosis

[Midsomer1]

I had an appointment with a new neurologist. It went well; I really like him. My diagnosis is RRMS. At this appointment, the doc looked over my MRI. I told him that I had more nerve pain in my lower body. He upped my gabapentin.

A few days after the appointment, I got on the hospital's patient portal to look over the chart notes and patient notes.

I see that he wrote in the chart notes that one of my lesions was more "pronounced" which he didn't tell me at the appointment.

The most disturbing thing I read was that my diagnosis was upped to moderate progressive! Why wouldn't he talk this over with me at the appointment. Or did he decide this all after I left the appointment.

What are your thoughts?

[greaterexp]

I'm sorry about the diagnosis, but glad you have one and have your symptoms treated. I forget - are you already on a DMT (disease modifying treatment)?

I think it's important to remember that labels don't mean a lot with MS. Even if yours is progressive, there is no commonly used way to determine your own actual prognosis. Progression never seems to follow a set schedule. If you are treating your MS with the best DMT you can tolerate, progression can be slowed greatly in many cases.

I think it would be good to have a frank discussion with your doctor about communicating directly with you what his findings are, and let him know that you want to know everything. He may have thought he discussed everything with you or felt that he would overwhelm you with too much information all at once. I can't know what his thinking was, but you must be your own advocate and request that he give you as much information as possible. Doctors, for the most part, try to sort through all the test results and findings and relate what is most important. One lesion being more pronounced may not mean a great deal in the long run.

I wish you the best, no matter what your diagnosis is.

[Midsomer1 in reply to greaterexp]

See my response to RoyceNewton. I have been through so much in the past five years since being diagnosed with transverse myelitis and MS. Nothing could overwhelm me now! I will talk to my doctor. Thank you for your response, it was really helpful to get your point of view.

[CrazyCatWom in reply to greaterexp]

Absolutely true! I can't say I really feel any different now knowing I'm Secondary Progressive than I did when I thought I was still considered Relapsing Remitting. When I went to get my flu shot, my doctor's assisstant asked me, "What is the difference between Primary Progressive and Secondary Progressive?" Ticked off that I'd waited over an HOUR in the empty clinic for a FLU SHOT!!!, I told him, "It depends what and how much sh__ is fu __'d up."

He laughed. "That's a blunt, but accurate way of explaining it!" he said.

[Midsomer1 in reply to CrazyCatWom]

😂😂😂 Thanks for that!

[Kenu]

I think he evaluated your situation after you left and added to his notes 📝. Hopefully you do well and get along with him🤞👍🙏🤗 Ken🐾🐾🐾🐾

[RoyceNewton]

Get on the strongest Disease-Modifying Therapy (DMT) now. I believe it is called Ocrevus for Relapsing-Remitting ms (RRms) if this is what "YOU" have. Good luck, "YOU" will be okay maybe just a little different. Have a good long cry, we mostly all do.

[Midsomer1 in reply to RoyceNewton]

No crying for me! I have been through being paralyzed from the waist down with transverse myelitis, diagnosed with MS, now walking with a cane. I have come a long way. This diagnosis won't break me. Keep calm and carry on.😀

[Midsomer1 in reply to Midsomer1]

Yes, Ocrevus is what I am on now.

[Neworleanslady]

I think he came up with that after your appt. i would ask about it in a reply on the portal if it was me

[Midsomer1 in reply to Neworleanslady]

That is what I thought about doing. Thanks for your reply!.

[Hidden]

I am sorry to hear you had this experience, but I read greaterexp response and I think she nailed it best wishes Robert

[jfalasco]

The diagnosis is good to have sorted out, but don't let that define your path with MS. As the others have said, get on the strongest DMT you can tolerate. Stay active! My neuro said my lesion load was heavy and if we went by appearances, I shouldn't be walking or working. But he encouraged me to fight, because all MS cases are MonSter. I am on OCREVUS and Gabepentin for nerve pain. You can fight the MonSter.

[Midsomer1]

I was first diagnosed with transverse myelitis which paralyzed me from the waist down in three hours. (TM is a symptom of MS.) That was five years ago and now I am walking with a cane. I feel that my MS went in reverse. I am also on Ocrevus and gabapentin. I have been through so much, I am not scared about the new prognosis.

[kdali]

I think being on the appropriate treatment matters more than which category you are in at any given time.

[Sukie427]

Midsomer1 , welcome to the club of which nobody wants to be a member. So sorry about your dx. greaterexp is correct. I was diagnosed 10 years ago with RRMS and went through several DMTs before Tecfidera came out and I went on that. I stayed on it four about 6 years, but last April my neuro told me that the number of brain and cord lesions had increased so much that I had "broken through" the Tecfidera and was now into SPMS. I freaked out. He put me on Ocrevus but the listed soide effects scared me, so I did a ton of research along with a friend who is a breast surgeon, her partner oncologist, my brother who is a PharmD, and my prior treating neuro from another state. Out of all of the drugs for SPMS, Ocrevus actually looked like the best option, despite the scary listed side effects. I had to wait 4 months before starting it because of the pandemic, but the decline in my physical functioning for which I was trying to prepare myself never happened. I kept up with my exercise, including daily horseback riding, PT, gym and aquatherapy (as much as COVID-related protocols and shutdowns would allow). I finally started the Ocrevus in August of this year, and I honestly began to feel better and stronger--until I broke my stupid foot and had to have surgery. But even during the 8 wks of down time, I still feel better and can't wait to get rid of this klunky boot so I can get back to being active! The moral is, don't let the labels get you down, always expect the best and go out and live your life with whatever adjustments you need to make!🌺🌷🌼