Memory Problem Is Scaring Me

[patientnurse]

Hello All,
  I am currently in limboland with a diagnosis. I will try to make this short. I have muscle weakness, twitching, spasms that never seem to happen when in front of my neuro dr. I have recurrent UTI's, migraines (recently went thru a 17 day headache), fatigue, all over body pain, swelling of face, hands,and feet. I started having left eye pain and visual changes after finishing a round of Prednisone prescribed for my migraine. My eyeball aches from behind and my vision gets worse throughout the day.

  Most I am still awaitng my LP results as to if there are any OCB's. I just found out that I had a positive ANA w/speckled pattern which is weird because last yr it was positive w/centromere pattern-go figure my patterns are changing. All of my MRI's and head CT's were negative for lesions so far or at least I think. I do have spinal stenosis C3-5.
  Last week I was told in passing by an attending dr that I had MS, and a nurse in my neuro's office told me the same a few days later. They both realized I haven't received my test results by my reaction to them "I don't have a diagnosis". So now I'm wondering if I do and no one has called me in to tell me yet or is this all part of another auto-immune disease since my ANA is once again positive.

  Recently I've noticed that I am having a problem with my memory. I called my mother the other day to ask why hadn't she returned my call only to be told that we had already had a lengthy conversation-one that I still don't remember. My mom told me to check my call log on my cell and it was there! Then I called a friend thinking I hadn't spoken with her in days...she told me we spoke the day before-didn't remember that either. Today I forgot my landlady's name, and I pride myself on remembering names. I don't know what is going on, I walk into a room and stand there trying to remember why I came in the first place. I go to cabinets looking for things I've already taken out while cooking. Things that I used to "just do" take a little while longer, I have to think hard about it. It's beginnig to scare me because I've never had anything like this happen before.

[patientnurse]

LOL-she went to a hospital in Oakland, and I'm in so cal, but with the special that Southwest Airlines is having I could fly one way for $49! I'm sure if I showed up she would think I was stalking her lol.
  Thanks so much for the links, I really appreciate it. I will let you all know what happens from here...

[sllowe]

Here's another

http://www.medhelp.org/posts/Multiple-Sclerosis/OCT-eye-exam/show/1226009

[sllowe]

I'm so glad to hear they are beginning to use OCT this as an investigative tool - we have quite a few discussions on it and I'll dig for them, but quickly, here is an oldie but goodie with a link from back when they were beginning to use it....

http://www.medhelp.org/posts/Multiple-Sclerosis/Vision-Test---Optical-Coherence-Tomography-/show/366336

p.s. don't add nobody's to your screename, lol Find out where she's going!

[patientnurse]

Since my last post the nurse called me...the docs want to do an OCT- I don't know what the heck that is-but I looked it up and it's something like taking pictures of the inside of the eye. SO maybe, just maybe I'm making progress here. I can't seem to have a full length conversation with the nurse though so I still have a lot of questions. Most of all- "Who is my dr now?" My dr left after finishing her residency so I'm nobody's patient right now.
   Sidesteps-yes I was in a full out flare last yr when my ANA was drawn. Now I'm wondering if the first lab botched the results because it just doesn't seem right with patterns changing.
   And I do agree that it was very unprofessional! I have decided that until I am seen in someone's office and told to my face that it's MS then I'm not going to worry about it. Worry just adds to all the other crap I deal with on a day to day basis. So denial it is :)

[Dee5112]

Please tell me why and MD or Nurse would discuss this in a hallway with you? This is not very professional of them!!! I could not imagine how you felt at that time!!

I have had two ANA test: one negative/one positive. MD told me difference in labs. Postive one was low. Not sure about the ANA stuff?? I do not have Lupus.
  
I would call to get your appointment moved up because it looks like they have already given you your DX.

Good luck with nursing school!!

[Sidesteps]

PN,

My mom was tested for lupus last year. She is also ANA positive (as is my sister) am as negative as someone can get!!  

This is what I know and what they told my mom.  She has all but 2 markers. She doesn't have enough to diagnose her with Lupus but the doctor indicated that sometimes false negatives occur when someone isn't in a flare.

Some of those tests are best to take when you are in a flare, I guess.  Surprisingly, this is what my new Neuro said about my LP. She won't give it to me until I'm sick. I'm OK with that. Really. :)

Were you tested when you weren't sick last year? What would be the difference between the two tests?

[grannyhotwheels]

I take lots of notes for sure... I keep a small day calender with me and write everything on it... I also have problems when cooking about already having ingredients out but still looking for them... It's very frustrating to say the least...

I think I would call my doctor and ask if he could give you the results over the phone of the test... September seems like forever when your waiting on news that could effect the rest of your life... He may not be able to tell you a diagnosis on the phone but at least the test results... I know the waiting part is the hardest...

I wish you the best and please keep us posted on what you find out... Also, we are here any time you want to talk...

I'll be praying,
Carol

[patientnurse]

Thanks Shell!
  I agree that making myself notes will help, otherwise I will absolutely forget. The scariest part of all is that next month I am heading into my last semester in the RN program and I would hate to have to drop out because of all of this. I've been an LVN for 12 years now and that's exactly how long I've worked at getting my RN...so to come this far and have all this physical stuff happen is disheartening.
  My LP was done on 6/23. I know the results are in, but my f/u appt isn't until the end of Sept. :( I go to a county hospital/clinic because I had to let my full time employee status (along with my insurance) go in order to be a full time nursing student. So I am pretty much at their mercy at this point.
  Has anyone every heard of their ANA pattern changing? Last year Lupus was ruled out. My RA factor was negative, and I've been tested repeatedly over the years-always neg. But now my pattern is indicative of Lupus, RA, or mixed connective tissue disease. So I don't know what is going on. I know Lupus can mimic MS and the symptoms of both are sometimes identical. I think my docs are just as puzzled.

[sllowe]

Hi there,

Yup - it can be scary. Well, sounds as if they are trying to get to the bottom of the inflammation - and hoping something shows in your CSF.

The others in the office could be mentioning due to codes used on test orders. Or, they are just assuming by the protocols the docs are using.

Your dx will come to you directly by your doc. When did you have your LP? Does take awhile most times for the o-banding results.

Try to stay calm when the memory glitches hit - makes it worse when it works you up. For names, just repeat in your head, and other things write lots of notes. Do some reading, even if you don't remember what you just read, lol ( I know that sounds silly) but just have to keep that brain active.

Hopefully the doc is putting this all together - the csf results could potentially rule out MS as well, depending on what is found.

Thanks for joining us - hope we can help you through this step.
-Shell