hello everyone

i was just wondering how long  everyone who has ms or any type of muscle disease it took to find out what it was?...and how hard is it to diagnose some of these diseases... I have been going to docs for awhile about two years and my doc say it maybe a rare form of md or ms my symptoms  are muscle pain and it feels like pins and needles through out most parts of my body and muscle weakness along with when i flex a muscle in my arms or a leg muscle it hurts really bad and feeling really tired most of the time or fatigued  and if i exerciser the worse it becomes around the muscles and the joints i used to be very active and in good shape is this normal for this type of disease? or muscle diseases?  

[Lulu54]

Hi CJC and welcome to the MS forum.  I hope you will hang out for a while and learn more about this MonSter disease from our members and our health pages. None of us here are doctors, just patients in one form or another, including lots of people in limboland like you are, waiting for answers.

Has your doctor referred you to a neurologist, preferably one who specializes in MS or MD?  I know little about MD.  What types of tests have been done for you so far - MRI? LP? VEP?  Blood workup? Have you been tested thoroughly for Lyme disease?

The symptoms of aching muscles you briefly mention don't sound like MS to me.  But that's just my reaction and I may be totally wrong.  Perhaps your muscles hurt because of the types of exercise you are doing? Can you be referred to PT for appropriate exercises for your condition?

My apologies that there are more questions here than answers - that seems to be how this dx process goes.  

I hope you will return here and join in the conversations.

My best,
Lulu

[Heather3418]

Hi cj,

Lulu is right...we need a few more details about what testing you have had and possibly why your doctor feels you may have MD or MS?  With MS it's all a matter of dozens of tests, MRI's and sometimes a spinal tap, to clinch the diagnosis.  MS is also a disease (usely) that can be identified as relapses and remissions.  Relapses meaning a worsening of symptoms lasting at least 48 hours, to weeks, possibly months, with no improvement in your symptoms.  A remission is just that.  It may be a total remission of your troubling symptoms and possibly some of the symptoms remaining, but your functionality is much better.  There usually has to be at least a month between such attacks and remissions.

Joint pain is not usually associated with MS.  MS is a disease of the central nervous system only, which includes the brain and spinal cord.  If you exercises are making your pain worse, it may be a good idea to slow down on the intensity of your work out, to see hwo much improvement you get.

As Lulu says, Welcome to the MS Forum and I hope that you will find many answers here.

All the Best,
Heather

[sllowe]

Hi there,

Adding on a welcome.  

Hope you are in good care and that the Dr. runs the proper test like mentioned by Lu and Heather.

For me, dx came quickly, and I didn't suffer long without knowing what I was dealing with.  My 1st attack was in March of 07, and my confirming dx came by Jun/Jul of the same yr.  

For many though dx is not so quick.  The work up is a long process and even then some are not dx'd.  You will find that here as the rest of us pop in to welcome you.

Thanks for coming along, and see you around.