Told undiagnosable, hospital file says diagnosed MS

[mokibear]

Hey all. I ended up at the hospital yesterday due to extreme lower back pain. Imagine my surprise when I was talking to the registering nurse and she states "so you are diagnosed MS"!!!

For those who don't know me, I've been on this journey a long time now and finally was told I'm undiagnosable. The belief is that whatever I have is in my CNS but that I have something completely new.

So I guess the stunned look on my face made the nurse inquire more and I told her as far as I knew, I wasn't diagnosed. She said someone must have thought so but now she didn't know whether to take it off my file or not. Sheesh. Since our health care in Canada is covered, it wouldn't be for insurance purposes so I'm at a loss as to how that got put in. Maybe it's there as a sign to me that my journey may soon be over???

Anyways, my lower back in full spasm for no apparent cause so got some meds to try to get it to ease up. So I guess my question is whether this unexplained sudden onset of lower back pain could possibly be related to MS?

Thanks all
Moki

[jensequitur]

Foot pain was a symptom for me for about three months.  I had the worst pain when I walked - it was like both feet were broken.  Turns out that the bottoms of both feet were spasming.  When hubby rubbed on them, they felt better, although sometimes it would set off a spasm.  I have to wonder if spasticity in your foot is causing your toes to feel sprained.  Maybe you can talk somebody into rubbing your feet for you?

[cainer]

ya- i landed in hospital with it- it was worse than giving birth! oh i didnt see if you female- sorry- but ya i really couldnt move -horrible pain

[yorkieville]

Hi, Baby Bear.

You know, I agree with doni-PPMS and I think you need to call the Neuro that believes you have it and tell him that it is in your file.

Love,
      Mama Bear

[doni54]

Hi Mok,

You already know my feelings on all this, PPMS!!!  I'll be praying that the dx is for real this time and that someone just let this fall through the cracks and never contacted you.  It would be wonderful for you to finally start getting treatment!!!!

Love you much!!!!

[mokibear]

I appreciate all the responses for this.

My lower back is feeling better but still a bit spazzy. It was so bad that like Shell said, even a breath hurt. It has caused though my neck and shoulder to start their thing which in turn has gotten my head jerks going so sleeping has been pretty tough.

I called my family doc and the thought is that someone accidentally put me in as diagnosed MS. As far as they are aware, I'm still undiagnosable. They are looking into it and will let me know this week if they find anything out.

I keep hoping though that it's a sign that my journey may be coming to an end with all this crap. Here's hoping.

Anyways thanks again for all the support you give me. It truly is appreciated.

Hugs
Moki

[Lulu54]

moki,
I'm still trying to figure out what to say to you about this mess.  I have read your post with disbelief multiple times.  

I'll stay tuned for the next update.
L

[SarahL2491]

Am sure your doc could get a copy

[sllowe]

Moke! Did the meds help? Is it still spasm'd up?
What a way to find out what they have in those files of yours! You must of been shocked. aaah
Tell us if you are doing any bettter.
I've had serious bouts of back spasms said to be my MS. Difficult to say the least to even get a full breath w/out horrific pain/spasms.
Thinking of you,
-Shell

[rendean]

Moki,

If you have an altered gait due foot pain, you could very well have low back pain and spasms due to the altered gait.

As for the "sprained toes" , I was told at least 3 diagnoses for the pain in my left foot which now I know to be MS symptoms. Had bone scan to look for stress fracture, sent to an orthopod for fitted "corrective shoes" and a surgeon for a Morton's neuroma. None of the above.  

Keep track of EVERY symptom. The ones that see,least likely may be the culprit that leads to the right diagnosis.

As for the MS on your chart, I would request a copy of the entire chart and find where the dx o f MS came from, nurse or doctor.

I hope your back feels better soon!

Ren

[mokibear]

Suman, thanks for you response. I've been gimping the last two weeks due to a couple of toes feeling sprained but aren't. Maybe that has thrown my back out? I just wondered about it as I get spasticity in my leg for no reason and wondered if the same cause could do this to my back?  I'm hoping to get answers too some day and hopefully sooner then later. It's been a long road already.

DV, I didn't get a copy of the file as at the time I was in too much pain to think of much else. The nurse saying I was diagnosed MS blindsided me so I wasn't thinking. My family doc thinks too that it was someone's error due to all the complications I've had and the docs at the hospital all believing I have MS. It's the neuros who say no but he's looking into how it got into my file. I know the nurse said she couldn't tell at the time who put it in there.

[doublevision1]

Wow, that is crazy.  I hope you got a copy of your entire hospital record.  Did it specify a date of diagnosis and diagnosing physician?

You said the diagnosis wouldn't be for insurance purposes because health care in Canada is covered.  I just wanted to point out that physicians in Canada do bill insurance (eg: OHIP in Ontario) for services rendered.  A key difference here is the single payer system VS the labyrinthine system in the U.S.   Insurance fraud does occur in Canada, though I suspect it's a lot less profitable than in the U.S.  Provincial health ministries undertake audits from time to time which include requiring patients to confirm that services invoiced were in fact delivered.  So while I highly doubt it's the case that MS showed up on your record due to insurance fraud, it is possible.  

My guess is  that it's more likely due to error due to the complicated nature of your case and the many physicians who have been involved.  Unless god forbid something fell seriously through the cracks and someone did determine you do have M.S. and did not inform you!  

[Sumanadevii]

Moki, my biggest symptom was lower back pain.  I didn't know my legs and feet were numb because the only thing I could feel was the horrible pain in my lower back.  Of course, xrays were taken as well as MRI's of my lower back....finding little if anything to cause it.  This went on for years and years until I could no longer walk but in a wheelchair for any distance.

I know today it was MS.  MS does not present as lower back pain.  My neuro explained that my legs were too weak to support me and my back was doing her best to keep me upright....Just causing yet more pain.

I hope you get answers.