Why was steroids started nemsmom?

Have you ever had steroids before? Did you have any problems? Steroids can have some nasty side effects and it is possible you may feel worse before feeling better.

Steroids were started because of extreme leg weakness.

I have had them, the last time thy aggravated my Periodic Paralysis. My potassium is slightly low, but it can even be in normal limits and cause me problems. I just went to urgent care. I think they are going to give me potassium and see if it helps.

Is the shoulder pain in the same arm that you had the IVSM in?

Yes it is. I didn't even think about that being connected!

I went to a different hospital yesterday. After five hours there I walked, or rolled actually, out of the hospital with a doctor suggesting that maybe it's somatic.

I'm done with hospitals right now. The only way I'm going back to one is if I have to by ambulance!

They are trying to move up myself appointment with the new neurologist though.

If I may make a suggestion? Ask for Physical Therapy(PT). PT can help leg weakness, strength and endurance.

When I was diagnosed one of my many symptoms was bilateral leg weakness.

My Neurologist told me the best thing I could do is Walk. Although my walking ability was severely compromised at this point. I started out taking multiple walks around the house and slowly built up to walking halfway up my driveway and back; to the whole length of the driveway and back. After a several weeks of this I was able to test my limits beyond my property.

nemsmom, it took a year to fully regain my mobility to what is my now my "limit" of 2 miles.

Since then I have always exercised and truly believe had I not listened to my Neurologist I would have been in a wheelchair very early on. I have also been in PT a few different times with positive results.

I definitely would complain to the hospital about getting someone else's lab results given to you, on paper! That is a huge HIPAA violation. There are some serious, and costly, consequences for violating HIPAA.

From your first post, it sounds like the neuro was saying the weakness may be from something else other than your MS. It didn't sound like she was saying you don't have MS. I would ask her about that. Steroids don't always work well for exacerbations. My old neuro doesn't use steroids for spinal flares. Apparently, they are not as effective. From what I understand, they are most effective for ON. If anything effects my eyes, I will definitely use steroids. So, the weakness may continue for you and still be an MS flare or pseudo-exacerbation.

I am glad you are going to see a new neuro. Hopefully, your appointment will be pushed up to a closer date. Hang in there and let us know how you are doing.

Sorry it's been so long.

I did see the new neuro, he is actually an MS specialist. He says there is no question, I definitely have MS. The reviews online about this doctor were right, he is great! I've seen him twice now. He actually does neurological exams every time I come in, my last neuro didn't. He's also keeping a closer eye on my labs and wants MRI's yearly, instead of just when I'm having a major issue.

He also got me set up with a neuromuscular neurologist to hopefully get a better understanding and handle on the periodic paralysis. So right now we are waiting on genetic testing to come back.

I also have a new primary care provider who is in close contact with all of my specialists. Since seeing her it does seem like a lot of things have been diagnosed. I've only switched to her almost two months ago but since then I have been diagnosed with Raynauds (unsure whether it's primary or secondary), Fibromyalgia and Interstitial Cystitis. She also did blood work for Lupus that came back negative. Although I'm not sure if I should ask her to dig deeper into that.

I'm extremely happy that my pcp keeps in close contact with my specialist and that the two different neuros keep each other informed because they work out of the same hospital.

From the appointments my previous doctors had got started I was sent to a urologist who wants to test for neurogenic bladder.

It has been several months of major up and down swings. The last week has been very bad again. But I'm starting to have a little more energy.

I get to go on my yearly sort-of-vacation with my husband next week. He has to go to a conference for work in a resort town a few hours from here. So his work pays for the room and I get to go with him. He has to go to classes and conferences all day but for the weekend before and then all evening each day we get to just relax together!

Thank you to everyone for all of your insight! Oh and the information about me getting the wrong labs and not having a bracelet did get to the administrator and as far as I know three people were fired. It's not that I wanted anyone fired (except maybe that doctor) but those were major mistakes and I'm glad somebody actually did something about it.