Not MS after all?
 

My neuro put me on steroids for a "possible flare" but my MRI showed I was stable. She tried steroids to see if they would help, but at my appointment Thursday she said that if it didn't help then this is not Ms and I would need a different doctor to figure it out. I don't know if she meant I don't have MS at all or that this just isn't a flare and these symptoms are something else.

I had my last steroid infusion last night in the ER.

My Mom was taking me to the out patient appointment, we were 10 minutes from the hospital and I started having severe pain in my left shoulder and arm. She was worried about my heart so we went straight to the ER. This was the same doctor from when I went in for my side pain, can't stand her. There are plenty of great doctors at this hospital, just not her.

If she tries to give you morphine and you refuse, she pretty much sends you home right away because she figures your pain must not be that bad I guess.

So I reluctantly excepted the morphine, it only takes the edge off and makes me feel high, I hate that! I was in there for three hours when she came in and was going to send me home and said, "It's too bad you couldn't get your last steroid infusion". I asked her why, she told me it was an out patient order so she couldn't do it in the ER. I told her the out patient nurses told me it could if I couldn't make it there in time! I swear I knew more about her job than she did.

So they finally got it done then sent me home after telling me my potassium level was fine. I asked for printouts of my blood work to take to my pcp. They sent them with me. I was reading the results and noticed several thing that said either high or low. Including slightly low potassium. Well, when I got back to my mom's house (I'm staying here while my husband is gone hunting, he almost wouldn't go because of how I'm feeling and this was the only way he would ) and I was looking for the doctor's name on the paperwork. I couldn't find her name, but I did find that the blood work they sent me home with isn't mine!

I will be complaining to the hospital about this woman!

So she sent me home with no idea why my shoulder hurts, it is positional. I have to go to my uncle's celebration of life today and I will be bringing lots of pillows and my zero gravity chair!

So I guess I'm back in limbo land because the steroids didn't help, in fact I feel worse.

I feel like that was a lot of rambling and I didn't even say what I wanted to. But it's 4:30 am, I feel like crap, I can't think clearly and I'm tired but wired!

I'm going to try and go back to sleep for a little while.

Sounds like you need a second opinion.....and possibly a new neurologist. Was this the neuro that diagnosed your MS?

I'd make sure what they gave you in the ER was the correct steroid and the correct dosage.

And the ER giving you someone else's blood work results???? That hospital is in some deep doo-doo because of that......unless you help them keep it "quiet". I hate ER's....I try not to go to them if I have any other choice. All the doctor's I've seen in the ER are clueless about MS and just want to give pain meds until you're unable to argue back then send you home.

I hope you're feeling better after some rest.

Yes, I'm going to see a new neurologist on November 10th.

I will be taking the blood work that they sent me home with to the hospital administrator, no covering that up. They didn't even put a stupid bracelet on me last night!

I'm hurting again just as bad tonight.

I will probably be at urgent care tomorrow, I don't think I will be able to wait for Monday to see my pcp.

Hi nemsmom,

MS pain isn't usually positional. It would be a good idea if one of your Drs. did an x-ray and/or MRI of the shoulder to check for an injury.

I am rather surprised your Neurologist didn't do that before prescribing steroids as a way to "rule out" MS as the cause. Even if it's MS steroids are not always helpful so your Neurologist's thought of throwing steroids at it won't necessarily rule out MS as a cause.

I am so disappointed in the medical field. I'm not talking about my current Neurologist....he's wonderful......but the ER doctors and nurses and some of the "specialists" who give up after one or two tests when nothing seems concrete for a diagnosis. We deserve much better. :Soapbox:

All of the times I've been to the ER I've had to explain what MS is to numerous staff members. I've pretty much had to coach them along the way. I leave feeling like they owe me money! :rolleyes:

As MS gains "popularity" you'd think doctors would want to become more familiar with it and some of the more common symptoms.

I hope your new Neuro visit on the 10th proves to be successful. And I hope you give that hospital a reason to be fearful of you! Not giving you an arm bracelet and then giving you the wrong blood test results.......that's worth a call to a lawyer IMO. Wonder who got your blood test results? :shocked:

I feel the same way about coaching the hospital staff. On top of MS I have Hypokalemic Periodic Paralysis and Postural Orthostatic Tachycardia Syndrome. So I really feel like I'm giving a seminar when go to the hospital.

The new neuro has really great reviews and comes highly recommended. If he doesn't know what is going on, maybe he will know who can help me.

Yes, the hospital is going to catch all kinds of flack on this. I had the same question of if they even read the right results!

The shoulder pain wasn't the reason we started steroids, it started on the third day of steroids.

I'm still doing worse each day right now. My lips are tingling, I feel like passing out and my left arm feels like there is pressure in it and it's half numb, besides the pain. So I'm going to urgent care after they open.

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.:hug:

Just an update...
 

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.