Lesion filled brain... Diagnosis

[Cann1980]

So my story stared with an eye doctor and optic neuritis... Currently waiting for a neurologist appt....

Between there was an MRI:
I was not told the number of lesions just that there were many, lots, multiple lesions.. Etc... I have talked now to someone who seen my scans and the truth is they are not countable bc there are so many. :/ the largest is 12 mm

So I know the truth is .... it means nothing... Right? It is all about where they are and if they are symptomatic etc...I know one lesion can be worst than a whole bunch...... . But really that does not make me feel better. :/

So my eye doctor assumes the neurologist will diagnose me with ms... The eye doctor can't diagnose me but in not so many ways he prepared me for what is to come.
The lesions are in the typical to ms spots.

So I am here for the long run everyone! :) you have all been so helpful to me.. Weather you know or not... I have read posts from years ago even that have helped me tremendously!
Thanks to all here's to a positive future!  

[HVAC]

Every case of MS is different. I have seen people's whose MRIs look like Swiss Cheese and these people have few symptoms. I have seen people with one or less lesions who have a lot of MS symptoms. The good thing about the brain is there is a lot of real estate for new pathways if signals get cut off. I have had MS for 48 years and I only have 4 brain lesions. I have had cognitive issues my whole life but I have compensated.

Humans are adaptable and resilient. I won't lie and say I was happy to be diagnosed with MS. I have learned a lot about myself, my marriage has gotten stronger, and I have made a lot of new friends.

I started training Service Dogs. I started riding horse again. I put an ad on a local board and five horse farms replied. I love riding and I have made new friends.

I have started taking care of myself. I cleaned up my diet and lost weight. I also started Yoga. I also started gardening.

I took a MIndfulness Meditation Class at a MS workshop. Now I am taking a class called "Everyday Matters" through the NMSS. It is on the Psychology of Happiness.

I am pretty happy these days. I have a bucket list. I went up in a hotair balloon. I am going ziplining. This summer I am going to my first Bed and Breakfast and then camping at the beach.

I thought my diagnosis of MS was the end of the world. I had to go to counseling. The first year was tough. It was a roller coaster of emotions. Life still is.

I am fortunate because all though I have MS and stage III ovarian cancer I have great friends, a wonderful husband and family, I love where I live, I have two great service dogs, and I can do what I have always wanted to  do be an artist.

MS can be a lousy hand but all I am asked to do is play the hand I was dealt.

Alex

[Dolphin_44]

I would think lesions caused by migraines would not be symptomatic, except the migraines of course. How bad are your migraines?

[Dolphin_44]

Hi Cann,

Apparently the area my lesions are in is the subcortical white matter which are atypical for MS, but not rule it out either. I'm not sure what all this means yet. Apparently MS lesion favor certain areas like the periventricular area.

Although I had the MRI due to numbness, twitching, pins and needles and other symptoms, the neurologist is telling me I have migraines. I have never had issues with migraines.

At least my family doctor is testing me for autoimmune disease and other things that can cause similar symptoms.

I'm 44 and have had these symptoms, which last a few months, about 3 times over a 10 year period. I started developing some weakness in my left leg now too. All this is really freaky.

I too cannot understand why some people get multiple lesions, like us, and others will only get a couple. I don't have a diagnosis yet, but my family doctor says they have to rule out everything else first.

[Cann1980]

Dolphin... Subcortial areas? I don't know what this means ...  Is this a "ms area"?
I have had migraines a lot !!!! But I have braces for a year now and I blame them!!

[Dolphin_44]

I just joined this site a couple days ago and, I too, was told I had multiple lesions in the subcortical areas. I was told over 30 and the largest was 8mm.

I have been experiencing twitching muscles, jerking muscles, pins and needles and numbness on and off for 10 years. Oh yes, a horrible memory too:(

The neurologist I saw thinks the lesions are caused by migraines, but I have no history of such. She is sending me for another MRI with contrast on July 4th. Although, she thinks this is not MS I know it is something serious, since I live with the symptoms.

I do hope they find out what is causing your lesion since there is apparently many possibilities. The neurologists do not always have an answer either, which is even more concerning.

[Cann1980]

Thanks Dennis!!!
I just can't wrap my mind around why some of us have so many and others only a few ... I get location means everything though.
I only know mine are in the locations typical of ms that does not mean bad necessarily ... There may be some in non ms areas too.. I won't know any more until I go to the neuro :)

I have read about ppms and thought that may be where you are at as I seen u are not on medications (dmd) in another post.... I love your descriptive posts... I may not have the same problems but I have so many questions and worries it helps me to hear a real life person version instead of google and textbook material.

[Sailorsong]

It depends on your priorities as to if a spinal lesion is worse than a brain lesion.  In my case having one in my spine I consider as worse since it is very large (cuts off 1/2 of my spinal cord) and I am always worried about how much longer I will be able to get around on my own since it is effecting both of my legs. I suppose if I had one effecting my vision to a great extent then brain would be my answer. So I guess it comes down again to location as to what is worse.

I would think that having numerous lesions does not mean that you have had MS for a long time. My first MS symptoms start back around 1988 (25 years) but still only have the four lesions.  But I also have the rarer type of MS (PPMS) which is usually a slow progression of symptoms over the years. From what I have read of people saying here it seems like the RRMS type does produce more lesions over time. So that may mean that you will be DX'ed with that type and will have treatment options to slow down things. With PPMS there are no DMD treatment available.

Dennis

[Cann1980]

Yes sailor I have followed some of what you have gone though since coming here for the past couple months... And I know that a few are sometimes worst and it is all in location... Which hearing again is good for be thx.
Is having one in your spine worst than brain? I will probably be going for a spinal MRI now too.

Poppy... My thing is that I can come up with a million things that are symptoms.. However I don't know if they are/were or not... Since i have numerous I am 33 does it mean this has been going on for a lot of years?
I would say I became symptomatic at age 22/23 that's the first time I can think of anything being off with me.

[Poppy7402]

My MRI used the word 'numerous' so I'm taking it that I too have loads of lesions.  If there's a lesion for each thing that's going on with me, there must be lots!!

[Sailorsong]

Yes it is all about location! I only have 3 lesions (atypical ones) in my brain and one in my spine. But I am messed up with lot of symptoms.

Dennis

[Cann1980]

Anyone else with me? Lots and lots of lesions?