MS Diagnosis

[Jodiet69]

I was diagnosed with MS by a nurse practitioner in September of 2011 from one MRI test which showed 4 lesions on my brain. She indicated she was 80% sure I had it.  Since then I went to see a neurologist and he ran a second MRI. The second MRI showed that I had still 4 lesions and that the one large lesion had decreased in size and that I didn't have any more.  He said yes, you have MS and handed me a pamphlet for medication and stated that a nurse would call me and show me how to give the medication to myself.  I walked out of his office and said that I was going to get a second opionion due to the fact that he had other theories and just ruled them out and handed me medication.  I chose a MS specialist for my second opinion.  During my office visit with the second neurologist, we went over my test results.  He asked me if I was challenging my diagnosis.  I stated that I was and that I felt not enough tests were done.  He agreed with me.  He stated that one strange issue with my diagnosis was that my vitamin D level was normal, and in the high range.  He asked me if I took a supplement, and I stated no.  He stated to me that if I was diagnosed with MS that I would be one of the first patients in 20 years that had a normal D level.  He then ordered some more blood tests and a lumbar puncture.  I underwent the puncture yesterday and had had all the blood tests, my appointment is scheled for next Friday.  I am at loss of words as to what is going on and feel very confused about the diagnosis. I feel like I am at square 1.

[kwarendorf]

"elevated levels of something-or-other"

This is how I feel about most of the lab/radiology reports, and there have been more than a few lately :-) Radiology reports are the most fun to read, at least with blood work there are numbers and ranges :-)

If your LP confirms MS, you need to find a specialist that you like. In theory you will be married to that person. My first specialist was a nightmare. I was looking for divorce lawyers before the end of the first visit. I found a new specialist that is so amazing I think my girlfriend may leave me for him :-)

Trust your gut! You have every right to be comfortable with the doctor you are seeing and the information they are providing.

Kyle

[sllowe]

Hi Jodie,

Sounds like you saw a jem of an NP 1st. They are fab, and she quite possibly caught this early for you. It's good the doc ran the extra tests - my bet is you will be on your way to treating MS soon.

I'm sorry you had the CSF leak. I had one too. They are horrible, and the vice-like pain in the neck that goes into the head is so painful. You did the right thing by getting the blood patch.

Glad to have you with us :)
-Shell

[Jodiet69]

I'm in Washington State, not too far from you. My neuro didn't offer me a pill form, I am so worried about giving myself shots every day, but will get used to it if I have to.  Want to stop this disease in its tracks if I can.

[JaneK1975]

Oh, not at all! You didn't upset me in the least. You asked an excellent question, and I think it's good for those of us in the choosing a medication stage to talk about our decisions.

I'm in California. You? I understand that Gilenya is only available in certain areas (certain countries, maybe?) It seems as though the drug is new and many medical practitioners are worried about the serious side effects. That's what I'm gathering from reading various sources.

[Jodiet69]

I hope I didn't upset you.  I was just stating there were other medications that can be chosen from. I have never heard of Gilenya, that wasn't an option for me, what state are you from?

[JaneK1975]

At first, I thought I would choose Gilenya since it comes in pill form, but my neuro talked me out of it because there are some pretty dangerous side effects with Gilenya. My understanding is that Copaxone is the only one that doesn't come with flu-like side effects, and that's the main reason I'm choosing it. It is a daily injection, but I think I'll have an easier time remembering to take it on schedule than I would with a three-times-a-week medication.

To each his own, as far as the meds go. I think every person should make their own medication decision with the help of their doc.

I'll be thinking of you, Jodiet69.
- J

[Jodiet69]

Copaxone is once a day have you looked at the other medications.  I have loked at Avonex , Reibif, and Copaxone.  Avonex is once a week, but seems to destroy your liver, Rebif is the medication I would choose because it is three times a week, and has less more flu like symptoms and lsess elevated liver enzymes and deceased white blood cell counts.  I looked at all three and if I do have it, I will choose this as my medication.

[Jodiet69]

I went to urgent care because after a camping trip, I went back to work and I literally would loose my open toed shoe wouldnt know they werent on and and my typing wasnt normal, I couldn't keep my concentation on the home row and I have been typing for years.  

[Jodiet69]

I will definitely keep you posted on my diagnosis. I know that MS is not the worst disease we can be diagnosed with, they rule out a tumor, which I was thankful for. I believe in God and I have put this in his hands.  I have 4 kids and am about to be a grandma, and I want to be able to be there for the early years of my grandkids.  My youngest child is 10 and plays soccer so I need to be there for him also to go to the games and bring snacks and stuff.  So I do pray that he will have pitty on me.  

[JaneK1975]

I'm curious now... What made you get the MRI in the first place, Jodiet69?

[JaneK1975]

Mine was perfectly clear, which I thought was cool and interesting. My neuro said it's supposed to be clear, and if it wasn't it would probably be a sign of bacterial infection.

It took seven days for my results to come back (although for many people it takes much, much longer- three weeks or more I've heard). It showed oligoclonal bands and elevated levels of something-or-other (can't remember), which (if I am remembering what my neuro told me correctly) indicates that my problems were coming from my central nervous system rather than somewhere else. He said the LP, combined with the MRI results, confirmed MS. I asked him if there was anything else that could be causing him to see those results. He said "Not in this combination".

I don't believe it's possible to ever be 100% sure of a diagnosis. For all we know, there is some as-of-yet discovered disease out there that mimics MS and that's what I have (or you, or any of the rest of us). But after going through multiple test and talking to my neuro one-to-one, I feel confident that I am receiving the best healthcare possible and my diagnosis most likely correct.

I'm going on Copaxone soon, even though my symptoms have been pretty mild so far. Sometimes I feel like daily injections are a drastic measure considering how mild my MS symptoms are, but I've done a bunch of research and everywhere I look, from a statistical and scientific standpoint, it seems to be the best thing I can do to improve my chances at retaining the excellent quality of life I have enjoyed all these years.

Please keep me posted on the outcome of your results. I know how hard the wait is, and I know how hard it is to decide which would be worse- having MS or landing in limboland where no one can tell you what's going on with your body.

Best wishes,
- J

[Jodiet69]

Im sorry about that, wow what a bummer to have to endure that without a patch, I couldn't imagine. May I ask what your LP showed?  Was the fluid clear when you had it done.  The person who took mine, said it was beautiful and perfect.  

[JaneK1975]

Oh, I am so sorry to hear about your headache. I had my LP on December 21st. Like you, my procedure was a breeze. I was fine until I woke up the next morning. The headache was unbearable unless I just lied down flat.

My poor fiance had to do the last of my Christmas shopping, and then had to take charge of the long drive to go to see my family. It took six hours, and I felt like poo-poo the whole time. The movement of the stop-and-go traffic we endured to get out of Los Angeles made my headache even worse!

My headache lasted 5 days without the patch. It was the pits. I'm so sorry about your bruised and sore back. Hope you feel better really, really soon.

- J

[Jodiet69]

I had the last of my tests yesterday, which was the worst test I ever had. I feel sorry for anyone who has had to endure the spinal puncture.  I had the test which went great and wow what a delight that it was without pain.  Much to my surprise, was the two hours after the test.  I got a slight headache which would subside everytime I laid down flat.  I went to sleep thinking it was just part of the test.  When I woke up the next morning, I had the worst headache of my life, everytime I barely sat up my head hurt from the pit of my neck and worked its way up.  My husband took me to the hospital yesterday morning at 9:00 and a blood patch was performed at noon.  What a nighmare.  Now my back is so sore and bruised.  I have enough holes in my skin to become a strainer.  This isn't what I expected.  

[JaneK1975]

I agree that you are doing the right thing in asking for a second opinion and being part of the decision making in your own healthcare. Sometimes it is difficult to be confident when asking questions of doctors and other healthcare professionals, but in the end, it improves the level of healthcare you receive.

It is not easy to critically assess the opinions you receive from healthcare professionals without sometimes making them feel like you are questioning their abilities, but it sounds like you're doing a good job so far. It *is* possible to trust their opinion while also taking part in your own healthcare. Kudos to you and good luck with the upcoming testing!

[Jodiet69]

I wouldn't necessarily say that he disagreed with the diagnosis, but that I hadn't underwent enough testing. One nurse, my family doctor, and a neurologist all said that it's more than likely that I have MS.  What I don't understand is that I am a legal secretary and have a job that requires me to be on my toes at all times, and I don't miss a beat.  I lift boxes, run upstairs, and do my daily tasks as needed of me.  I am a pretty healthy woman and I work out every other day.  I don't see anything wrong with me except some occasional loss/weakness in my right hand and foot.  I don't say that I don't have MS, I just want a neuro to tell me why he thinks I have it.  Is that too much to ask?

[Sumanadevii]

I don't use PA'a or NP's ever.  I hire a doctor.  If I need to see him/her, I see HIM/HER not his/her PA or NP.  Some PA's and NP's practice on their own.  Personally with the prices they set why not see a real doctor?  The whole thing makes no sense to me.  

So you saw a neuro then disagreed with the dx and now are getting a second opinion.  I would say you are smart to do so...even smarter if that neuro is an MS specialist connected to a large hospital.

I think you are on the right track.  Keep us posted.