MS or Something Else?

[Tylermom]

Hello
I am new to this forum and have found this very interesting as the disease is complicated.

I will give you my symptoms and then, hopefully, someone might have a guess at what is wrong with me.

For about a year, I have had episodes lasting 1 to 2 weeks in duration and separated by 1 to 3 months at a time with the last one in June being the worst.

My symptoms are: Dizzy at times, extreme fatigue, waking up tired not even able to do normal housecleaning.  Being off balance is probably the most troublesome.  Shaky hands at times and a burning sensation down the back of my right leg.  This sypmtom is a new one, yet not painful.

My GP sent me to a Neuro thinking it might be MS, then my MRI and LP last year was normal.  I don't think they really know what to do with me at this point.

The occurrences are happening closer together now and seem to be getting worse.  I have had normal MRIs and normal bloodwork with the exception of my ESR being a little high (34) and VEP was normal as well.

What diseases other than MS come and go such as this?

This is a curious problem and I would love answers, if you have any or have heard of problems such as mine.

Any help would be appreciated.

Kind Regards,
Tylermom

[Quixotic1]

I'm findly getting around to your questions.  Somehow I overlooked them, I thionk because I responded to your request about a neuro in TX.

Your bouts of symptoms are indeed suggestive of MS.  You mentioned multiple MRI's.  When was the last one and have they doen the C-spine and T-spine?  Were the MRI's done with contrast?

Regular neuro's seem adamant that the MRI must be positive in order to continue considering MS.  I think this is unfortunate, because I keep finding people who end up with the diagnosis, which was delayed by having a negative MRI.  But, if the clinical symptoms are really persistent and affect the quality of life, I believe the entire work up must be done.  Sometimes the other tests will give good evidence.  Then the MRI's can be repeated at intervals and the diagnosis made as early as possible.  Unfortunately some people will have towait until there is enough evidence to make MS more probable.  The treatments cost upwards of $18,000 a year abd can have persisting side effects, so the diagnosis is not made lightly.

You've had a VEP.  Have you ever had visual symptoms?

If you would answer these questions, I'd appreciate it and could answer further.

Quix

[Tylermom]

Thanks!  I will try to educate myself on this as well.

[tory2457]

Sorry you are feeling bad. Getting an answer to why you feel lousy is so important.

Please read about lyme disease. And more importantly, read about the poor testing and how "testing positive" is difficult...

There are lyme sites that will help you understand what lyme disease is, and help find the "right" doctor who is educated in lyme disease.

MS and Lyme are very closely related....I say that because I've had MS for 20+ years and after I read about lyme disease,,,,,I found out I really have lyme!  I do have lesions on my brain and spinal cord, and all the classical MS symptoms.

Lyme symptoms wax and wane, come and go....lymenetdotorg is a wonderful site with lots of helpful people.

the very best to you,
tory