I need answers

[vikkigirl]

Have lupus for 12 years  and  2 years.sjogen's. .Have had very blurred vision for the last 18 month off and on. When my vision get worse my memey and concentration get really bad. Have to take off work.Had lumbar puncture and MRI about 1 year ago. Negitive on LP. Said MRI had some white matter but that was "normal for my age".  Just had blood work again and dr, said test for lupus and sjogren's was normal. Could this be MS.

[vikkigirl]

Thanks for the info. I will start keeping a time line, I'm am still hopeful that things will turn out ok.

[Johnny Utah]

  Hi!

  Welcome to our group. I'm not a doctor but I can share a little with whats going on between you and your neuro. The MRI can provide a wealth of information including MS lesions. The power of the equipment being used will somewhat determine your results. More power=better results.

Anyone that has neurological issues that haven't been diagnosed should never have lesions cast aside as insignificant.

The LP looks for infection and some specific MS marks. A normal LP does not rule out MS because you can have MS and have a normal LP. Somewhere around 5% of those with MS will have a normal LP. How lucky do you feel?

Blood work checks for other markers that may be causing your issues. If everything falls within normal parameters it rules out several other medical conditions that could be causing your symptoms.  Blood work does not check for MS.

Even seemingly insignificant things like touching a finger to your nose can point your neuro in a certain direction. If he is suspecting MS a lot of what he will be doing will be done to exclude other causes. There is not one single test that confirms MS. Thats important to understand.

Unfortunately like most of us here you are showing symptoms of MS. They may be caused by a host of other conditions so don't get all worked up yet that you might have MS.

What you do need to do is to be your own advocate. You know when your not feeling well, everybody does. So when you don't feel well follow-up and ask for answers. It is possible to float around in the system for 10-15 years without any kind of diagnosis which can be extremely frustrating.

Start keeping a time line. A record of when you haven't felt well, what the symptoms were and when it occurred. Month/Year should be fine. Try to go back as far and accurately as possible. Keep it readable. Some day you may want someone to read it, and just like a resume they may skim more than read. I see you are from the US and part of our & my older generation. Make sure you have documentation in your medical records on how these symptoms effect functionality. Can you brush your teeth, drive, do you suffer memory loss/recall issues.

It is important to remember that Social Security does not just take the doctors word that you are disabled. They have their own criteria and they make the determination. And I am not trying to sound like bad things are coming. But as you know first hand, after dealing with Lupus for 12 years, you don't know where you are going to be tomorrow and how healthy you will be. Be your own advocate.

Johnny