Please help. Not getting answers.

[Col9567]

I am desperate at this point. I have been progressively getting sicker for the past 6 months. My symptoms started as horrible fatigue. Followed by muscle aches mostly on right side, blurry and double vision. Blurry vision almost all the time now. Right hand that tries, severe short term memory loss, my bladder needs emptying every 30 minutes sometimes less. Tingling and numbness in right arm, hand and foot. Now it has begun in left hand. Trouble with balance.
I have been to two neurologist as well as family doctor. They all think I have Lyme disease. However, I did have it 13 years ago. None of my blood test are showing current infection.
I am testing positive for Epstien Barr in the past. I had mono as a teen and in October had shingles.

I am 45 years old and feel horrible since January. I have had a mri with contrast. Dr says it shows a fair amount of lightness but he isn't concerned. I have no Idea what that even means. I have asked could this possibly be MS. All three say no and keep looking at my Lyme has come back.
Any input would be greatly appreciated as I at the end of my rope.

[babymonkey]

Sounds like you have been and continue to go through a lot. You will be in my thoughts and prayers.
First of I am not a DR or Nurse but a long time MSer. I would think that your MRI would have shown lesions if it were MS since you have had symptoms so long. All of these Autoimmune diseases seem to have so much in common that I personally think they are all linked in one way or another.
However, I did find a link between you and I. I had Mono when I was 12. Hum, are we on to something???

Best of luck with your battle to get answers as well as your health stabalizing. Keep me informed!

[onlyairfare]

If your neuro and family doctor think your symptoms have something to do with Lyme Disease, would it help if they referred to you to an Infectious Disease specialist?

I am sorry you are having such a difficult time of things, and not getting any answers. I wish I could do more than just commiserate with your frustration. Most of us with MS have known frustration, too, so we can sure sympathize.

[MSer102]

As the saying goes, when you get to the end of your rope tie a knot and hang on!

I think the first step is for you to go back to your neurologist and get an explanation for what "a fair amount of lightness" means because it isn't a neurological term and it doesn't mean anything. You need a good explanation for what your MRI looks like and what it means. It would be helpful if you got a copy of the radiology report for your MRI to see what the radiologist thought your MRI showed. Problems from MS have a particular way they look on an MRI and the radiology report should say if yours look like that or not.

Have you been to the ophthalmologist to have your vision checked? What did the ophthalmologist say was causing your blurry and double vision? It's normal for vision to be blurry up close but not far away or as much far away after you turn 40. Have you been to a neuro-ophthalmologist to have him/her look at your MRIs?

Have you had a lumbar puncture? Have you had evoked potentials tests? Have you had blood tests to look for vitamin D and B12 deficiencies? Have you had blood tests to check for other autoimmune diseases?

One of the 2 major mimics of MS are Lyme disease (the other is B12 deficiency) so it might not be a bad thing that your doctors are still considering Lyme disease.

If you still have unanswered questions I think the first step is to make sure you ask them of your doctors and then keep asking until you understand what they're telling you. There's already one thing that you said your doctor told you that you don't understand (and nobody else can understand either because it doesn't refer to anything neurological). You can start with that.

The second approach is to take all of your medical records to a neurologist who isn't associated with the doctors you're seeing and get another opinion. A university medical center is usually a good place to go. Be sure to ask that doctor all of your questions too. Good luck!

[Clays meme]

MS and Epstein-Barr virus/mono

I, too, had mono in college and have MS. There seems to be possible evidence of a connection between having mono (manifestation of Epstein-Barr virus) and MS. Google "Epstein-Barr and MS connection". A study was done which revealed that EVERY person in group with MS was also positive for EBV. There were persons positive for EBV who did not have MS but NO ONE with MS was negative for EBV. Hmmm....

[JerryD]

My response is the same as MS102's. You sound like you are trying to decipher your problem without all of the pieces. Get all of the tests and, then, start asking more questions. I hope you get to the bottom of your problems. Good luck