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Does symptoms with No enhancement on MRI mean PPMS
I had balance issues lasting 5 months...had my MRI showing 10-15 lesions two were 10mm , none of them enhancing, but I am still feeling dizzy at times esp outside , malls etc. My legs are somewhat tingling...and I am noticing a leaky bladder ...scared to death it is PPMS. I am 45 female, still waiting to go to the Nuerologst .
glad to hear that. should put your mind at ease. Get a copy of your MRI and put it away should you ever need it or move.
Said it was probably CIS, but didnt seem to push that because my symptoms didnt last for 24 hours? It was about 10 minutes of vertigo about 5 times over 4 months. Still dont know what to think...have to wait 6 months now to find out I guess.
FINALLY went to the Nuerologist. I am showing no signs of MS neurologicially. When he looked at my MRI of my lesions ..there is only one that doesnt look like migrane lesions. I had blood work everything negative ( Lyme, Lupus) except me Sed rate is 28 and marked high and my B12 level was only 346. I have to go back in 6 months for a second MRI. Was told to take B12 tablets daily...and that was it.
Thanks!! it is just all so confusing...I am trying to diagnose myself and I know that is wrong ...but cant help it. Just scared .
Alex gave a nice summary explanation but MS isn't an easy disease to understand - even for those of us who have had it for a long time.
You don't really need to think (or worry) about a specific SUB-category of MS until you know if you have MS at all. No one 'type' of MS necessarily presents with worse symptoms or lasts longer. It is an haute couture disease - made to order for each specific customer. Nobody knows exactly what their personal design looks like until they try it on.
You could also be dealing with some other disease entirely so try to hold back any panic. Hey, even a MS diagnosis doesn't call for panic mode! I think that is the other thing Alex tried to show you. She is one of many here who lived successfully with UNdiagnosed MS before doctors finally were willing to give a name to her lifetime companion.
You should know more about your specific case once you see the neurologist. In the mean time, keep a written log of your symptoms. It can be difficult to distinguish a true disease flare from symptoms that increase with stressors like heat, exercise and highly charged life events. It takes a year or more (minimally!) for most individuals to learn their own pattern. IF THIS IS MS, it is entirely possible for symptoms to last months before they start to diminish or stabilize and establish a new baseline normal. Understand? If you still have the original symptoms..... you can't mark a relapse. That DOES NOT mean this is PPMS. Again, you should know more about your specific case once you see the neurologist.
If you want to learn lots (and I mean LOTS) more about MS, check out our Health Pages. They are written by forum members and most are easy reading (even if some of the info is hard to hear). You can get a start on one of the most frequently viewed articles by click choosing it from a short list you'll find in one of those boxes that run down the left side of each page.
Of course you should still feel free to ask questions - some are sure to come to mind as you read and learn. There's nothing like education to spawn questions :)
I sure hope this isn't MS but I'm glad you joined us here either way.
Mary
You don't really need to think (or worry) about a specific SUB-category of MS until you know if you have MS at all. No one 'type' of MS necessarily presents with worse symptoms or lasts longer. It is an haute couture disease - made to order for each specific customer. Nobody knows exactly what their personal design looks like until they try it on.
You could also be dealing with some other disease entirely so try to hold back any panic. Hey, even a MS diagnosis doesn't call for panic mode! I think that is the other thing Alex tried to show you. She is one of many here who lived successfully with UNdiagnosed MS before doctors finally were willing to give a name to her lifetime companion.
You should know more about your specific case once you see the neurologist. In the mean time, keep a written log of your symptoms. It can be difficult to distinguish a true disease flare from symptoms that increase with stressors like heat, exercise and highly charged life events. It takes a year or more (minimally!) for most individuals to learn their own pattern. IF THIS IS MS, it is entirely possible for symptoms to last months before they start to diminish or stabilize and establish a new baseline normal. Understand? If you still have the original symptoms..... you can't mark a relapse. That DOES NOT mean this is PPMS. Again, you should know more about your specific case once you see the neurologist.
If you want to learn lots (and I mean LOTS) more about MS, check out our Health Pages. They are written by forum members and most are easy reading (even if some of the info is hard to hear). You can get a start on one of the most frequently viewed articles by click choosing it from a short list you'll find in one of those boxes that run down the left side of each page.
Of course you should still feel free to ask questions - some are sure to come to mind as you read and learn. There's nothing like education to spawn questions :)
I sure hope this isn't MS but I'm glad you joined us here either way.
Mary
I still kind of dont understand, not to be stupid..I am new with all of this ...could I have had a relaspe and not know it ?? I got the MRI three months after my intial symptoms
Only a MS Specialist can say if you have PPMS and they usually follow you a year to decide. The stages are not hard and fast even to them, just guidelines.
According to my MS Specialist at Duke PPMS usually has very few brain lesions. I have had it for over 40 years and have three. It is very subtle you almost do not notice changes. I did not even know I had a problem it was Doctors over the years who saw things. I do not have attacks, excaserbations, relapses. The key for PPMS is you start with PPMS and that is the only kind of MS you ever have.
RRMS eventually goes into Secondary Progressive MS or very rarely Secondary relapsing MS. Most people go into SPMS which sounds scary but in some ways it does not have the dramatic ups and downs RRMS. Many on the forum have SPMS. Many Neurologist treat it no differently than RRMS. Most try to treat PPMS the same. I am offered any drug I want with PPMS. It was my decision to go off DMDs.
Also no two cases of MS are the same. I have had PPMS since I was at least two. I ride horses and work around the barn. I train dogs. I hike. I have issues but I live a good life.
Alex
According to my MS Specialist at Duke PPMS usually has very few brain lesions. I have had it for over 40 years and have three. It is very subtle you almost do not notice changes. I did not even know I had a problem it was Doctors over the years who saw things. I do not have attacks, excaserbations, relapses. The key for PPMS is you start with PPMS and that is the only kind of MS you ever have.
RRMS eventually goes into Secondary Progressive MS or very rarely Secondary relapsing MS. Most people go into SPMS which sounds scary but in some ways it does not have the dramatic ups and downs RRMS. Many on the forum have SPMS. Many Neurologist treat it no differently than RRMS. Most try to treat PPMS the same. I am offered any drug I want with PPMS. It was my decision to go off DMDs.
Also no two cases of MS are the same. I have had PPMS since I was at least two. I ride horses and work around the barn. I train dogs. I hike. I have issues but I live a good life.
Alex
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We've had a good discussion here recently about the benefits of improving general aspects of life -- diet, physical activity, relaxation/meditation -- to bring us to a better general balance. It may not cure but it almost always improves quality (and often function as well). These are areas you can concentrate on now, BEFORE you see the neuro. I think it will help you and also believe it relays a powerful statement to a doc when we show we don't intend to wait and rely on prescribed pharmaceutical help alone.
Try to channel your diagnostic desires in a direction that will help the neuro when you see him. Here are direct links to two of the HealthPages that many people have found helpful.
One about how to prepare for your visit:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Doctor-Visit-PREP---Be-Prepared/show/156?cid=36
One to help place your symptoms on a timeline:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36
Channel those anxieties into useful outlets that empower you rather than drain energy. And let us know how you're doing along the way.
Mary