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Old 07-13-2012, 10:12 PM   #1
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Question New Member, questions, questions!!

Hi all!
I thought that I had registered here a few years ago, but I guess not.
I will warn in advance - this is a long post of history and questions........
I have NOT been diagnosed with MS, but I have thought for several years (12+) that something was going on........and it apparently "runs" in the family!

First ME....I am 51 yrs old and a female....all the weird things started in 1996, when we got our first home computer and the internet......

I began to have what I described to my doctors as all of a sudden one eye would go dark for a few seconds to a minute and then it was as if a wad of cotton was over my eye and it was being pulled apart to allow my vision to come back. It would NEVER happen to both eyes at the same time, but it DID happen to both eyes....this went on and off for 5+ years......I was told it could be occular migranes but never had a headache...a couple of years ago, I found (on the internet) an exact description of this....it is called AMAUROSIS FUGAX.......it finally went away...I dont remember when,..

In 1999, someone at my office commented about how purple my arms were....my legs had purple marks too..I went to my PD and he had another doctor come in and at first they thought I had Beurgers Disease.......he sent me to a Rheumatologist who diagnosed Raynauds and Livedo Reticularis.....he put me on Norvasc, which I took for probably 10 years....I live in the south, so the Raynauds isnt as bad as it could be...even its kind of disappeared.....

I was tested for all the autoimmune diseases and have been several times since then.....

In 2008, all of sudden, Vertigo hit me with a passion....it lasted on and off for about 18 months....I never got sick but there were times when I could NOT function....the worst time, I was standing on our porch, having a normal conversation with my DH, when suddenly, I grabbed him by the collar with a DEATH GRIP.....I thought I was falling.......and I was standing perfectly still!
And again, that went away....I had an MRI, was told the results were normal, but later I read my insurance diagnosis and it said brain disease.....poor blood flow to brain....

In 2010, I woke up one morning and thought that I had slept wrong. My shoulder ACHED! I thought I had pinched a nerve in my neck.......after about 3 weeks of that not going away, and numbess and tingling down my arm and into my fingers, I made an appt with a Neuro.....I had actually been to him in 1996 for the eye thing, but they had disposed of all their old records....
He did all the nerve conduction tests and he said they were ok.....when he saw what I had put down on my history, he had me do another MRI and a ton of bloodwork. In the meantime, he had me go to PT for six weeks, which helped, so I figured I had pulled a muscle...

When I went for the followup, he said "lets talk about all these STROKES"......I was like *** are you talking about......he said the MRI showed that I had had 8+ lacunar strokes (small vessels deep inside the brain)......he has me on a baby aspirin and thats it......I have since gone back complaining of brain fog, depression, anxiety, not sleeping, ect.

Tonite, I had something else weird that happened and that is what brought me to this forum.....for years too I have had toe cramps...The kind of Dr. Spock spread your toes type without your permission! Tonight, it started in my toes, then my ankle started cramping and turning in, then it continued up the TOP of my lower leg (not the muscle side or fat side).....it was EXCRUTIATING..........I ate a banana whild my DH was aggressively massaging my leg............I have NEVER had it do anything more than my toes......

So, now to my "family history" of a disease that supposedly isnt inherited.........

My half sister lost her eye to Optic Neuritis in the early nineties....had to have the eye removed.....she tried to take her life in early 2000s by an overdose of Tylenol and something else ( I cant remember)....she almost suceeded, but thank goodness she didnt.....she developed Necrosis in her bone joints because of that and the years of Prednisone from losing her eye....she took in for almost 20 years (the max doses) until she passed in May from a heart attack......she was never actually diagnosed with MS (or she didnt tell us - we now have come to believe that she did have it).....

In 2010, my full sister was finally diagnosed with MS definitively)....she too had Optic Neuritis about 15 years before, went through the steroids, but never fully regained her vision in that eye)....one day, she just said she had FIRE start at her hip, run down her leg, over her foot and back up the other side........she knew what she had.....went to the Neuro, told him she had ON, and he did blood work and an MRI....one of the blood labs was sent to Mayo because he wanted to rule out something more serious! than MS.....
She takes the Avonex shot once a week and Trileptal daily....

I TOLD you this was long......anyway I just wanted to share, seek out opinions and have someone tell me if this leg cramp thing is yet another sign that I need to remember to bring up to my Neuro visit in October..........

Thanks for listening!
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Blessings2You (07-14-2012), Dejibo (07-14-2012), Judy2 (07-16-2012), SallyC (07-13-2012), yeti (07-14-2012)
Old 07-14-2012, 09:30 AM   #2
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Hello and welcome. I am soooo sorry that you are struggling and the medical community hasnt been able to give you real answers, or real support.

Is there an MS center near you? these folks are expert at sorting out what is what and what isnt what. many of us go, even if we have to travel and get our dx and then we use a local neuro for follow up care. Your problems sound multi level and you may need multi level care.

Let me warn you in advance, there are more than 100 diseases that can mimic MS including the brain lesions. Your MD will take that 100 (its actually more like 400) and start ruling out the easy ones. Vit D or B12 def or other vit stuff. Red cells, white cells, plasma counts, thyroid levels adrenal levels...once they move past those they start looking at things like Lyme, lupus, Sjoghrens, and so on. Once they get to the lower end, they start looking at migraines, visual or optical migraines and the like. Finally they will move into the "cant prove or disprove" them catagory. There are a handful of disease that cannot be proven till autopsy and since we dont want one of those just yet its a guessing game as to which of these diseases fit YOUR pattern. Everything from where your lesions live to how often you have a head. they take all into account. Then when they think you are IN a flair (you rarely gain any answers when not in a flair) they will do a spinal tap. If there is inflammation in your brain, it will show up as O bands in your spinal fluid.

There is something called CIS or clinically isolated syndrome. This means you have a lot of symptoms that could fit in one or the other catagory but they cant place you there just yet. Some folks end up on treatment anyway, and some folks are told they have to wait for their disease to turn the corner and identify itself.

I wish you the best of luck. let us know how it goes. As for your tootsies it could be a potassium def. or you could drink tonic water at night for the quinine which is well known to help muscle cramping.
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Old 07-16-2012, 05:55 AM   #3
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Hi MDL and welcome to the group! Sorry you have to be here, but it's a great place for info, support and genuine caring. I suppose at this point your symptoms could point to many things, but hang in there and keep reading and possibly seeing a new doctor. Some here took years to get their "official" diagnosis. For me, after optic neuritis twice, fourteen years went by before more symptoms appeared and I was diagnosed as "probable MS". Now thirty-six years later, I'm secondary progressive, but everyone's disease course is different.

When my ms started advancing, my toes would do what you describe. As time has passed, those "cramps" have turned into spasticity throughout my whole body......Ouchers! Just my experience. Take care and good luck. Stick around and let us know how you make out........

SPMS -- FIBROMYALGIA -- Ouch! and Ouch!
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Old 07-16-2012, 01:31 PM   #4
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Welcome MDL..
~Love, Sally

"The best way out is always through". Robert Frost

~If The World Didn't Suck, We Would All Fall Off~
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