Steroids

[Qt314grl]

When a relapse hits, so you wait it out or do you get steroids?

I’ve got terrible numbness in so many new spots for last two weeks and getting bad migraines. Thinking of asking for iv steroids when I talk to ms Dr tomorrow about DMDs.

[Nom_De_Plume]

@Qt314grl

Yes, I would certainly discuss this with your doctor. You might want to notify him/her before two weeks have elapsed next time? In fact, you might want to roll this into the same conversation, “when should I call to report new or worsening symptoms?“

Welcome to the group BTW! 😊

[Qt314grl in reply to Nom_De_Plume]

Thanks! We did talk right after I ended up taking ambulance ride to Vandy for right sided numbness. New MRI showed 3 new lesions. We spoke on the phone and she said she would “overbook” me into my appointment that I have for tomorrow and we would discuss DMD. She said to wait on the steroids....no idea why. I’m definitely going to ask for clarity on this stuff tomorrow. It just sucks it’s so hard to get an appointment but I always have a list with me. Sigh. It’s stressful.

[Nom_De_Plume in reply to Qt314grl]

Qt314grl It sure is stressful.

So sorry to hear about ambulance ride, etc. I hope your appointment tomorrow helps to clear up a lot of questions and puts you on the path to good treatment for MS.When you have time, please update us on what your doctor said.

Incidentally, you mentioned "getting bad migraines" and "right-sided numbness." My niece (14 yo) had a "hemiplegic migraine" this summer and it scared us. Just sharing because it may be that your numbness is not MS-related at all. Obviously the 3 new lesions are reason for concern, but this additional piece of info may complicate things.

Best wishes for tomorrow!

[Qt314grl in reply to Nom_De_Plume]

Oh yes. In fact two other neuros had said migraines for years. It does complicate things for sure.

[Doubled51 in reply to Qt314grl]

Qt314grl good luck with the steroids.I went to my doctor last week. After 5 days of extreme fatigue leg pain and head aches he said I was just recovering from a hunting trip. I mentioned steroids and he acted like I'd asked for iv pain meds or something. I didn't understand. I had steroids when I was in the hospital but that was April and nothing since so I don't understand the problem. I just had to suffer. So good luck at your Dr appt .

Donnie

[kdali]

I'm suppose to call when I have a new symptom or worsening old symptom for over 24hrs, and then she will decide if it warrants offering me steroids. This question comes up often and everyone has different answers. Please let us know how things go! I'm sorry about your migraines and numbness.

[Qt314grl in reply to kdali]

It’s been two weeks since this started. When I spoke to my MS doctor after it happened she said let’s wait. I’m not sure how long she meant. It’s all very frustrating as it is super hard to communicate with my dr.

[kdali in reply to Qt314grl]

Isn't it frustrating! Wait for what exactly? 😵 I'm sorry that your MD is hard to communicate with, but I hope you have contacted the office regardless to voice your health concerns.

There's a window for giving steroids, but I've forgotten what the cut off is. I believe I've read that there's a 50/50 chance steroids will shorten your relapse, and I've seen a study where heavy use of them was correlated with higher number of "black holes".

[Kenu]

Maybe a new doctor might be in store 🤷🏼‍♂️ My old doctor I had for twenty years always said to call after new or old symptoms acted up after 24 hours and she started my on steroids same day 👍 It always spead up recovery 🙏 Lucky with new doctor I have not had any new problems to call for 👍 My so called normal problems are slowly getting worse, but I’m still getting out, driving, and using a walking stick with a AFO. After 22 years I feel very blessed.🙏 We are our own best judgement on what’s going on with our body. Stay after your doctor for right answers or maybe move on. 🙏🙏🙏 are with you ❤️Ken

[Qt314grl]

It did not go well in my opinion.

Back on the merry go round of doctors I go!!

My Vandy MS Dr is still hesitant to give me the diagnosis of MS in my chart and start immunosuppressive treatment. Understandably so as it is a permanent label. And immunosuppressants are....unpleasant.

I have about 25-30 brain lesions that have mostly been stable since 2013 and they don’t follow the typical location pattern for MS. I may or may not have 3 new lesions but since they were done on different MRIs it is hard to tell.

When I asked what else could cause them, I was told vascular events from high blood pressure or diabetes (don’t have either of those), afib (only had one known incident of that long after the lesions appeared on MRI and 30 day halter monitor is good), Lupus vasculitis (ana is normal so that’s not it either) or *perhaps* my moderately elevated antiphospholipids (treatment for that is....immunosupression)

So I have to see a neurosurgeon later this month to see if my thoracic herniated discs are affecting my spinal cord and possibly causing my foot pain.

I have to go see a neuro ophthalmologist as I have had episodes of double vision.

I have to go see a neuro something something (can’t remember the designation) to see about my feet and other nerve pain issues. A nerve specialist basically.

I have to do a visual evoked potential test with neurophysiology.

My ms Dr is following up on the only other autoimmune issue we have found which is moderately elevated antiphospholipids.

And finally a repeat MRI in May.

I continue to struggle with neuropathy, numbness, migraines and fatigue on a daily basis. I’ll do the best I can for now I guess!

Over and out.

[Nom_De_Plume in reply to Qt314grl]

@Qt314grl

Meanwhile, if it is MS, you could be benefiting from DMT. So sorry this is such a struggle for you. 😑

[bxrmom]

Qt314grl Sorry your appointment didn't go well. I hope that with the testing that the different doctors that you are going to be seeing, you will get some answers. Please keep us updated.

Jessie