I may have MS~that's why I'm here~but I'm still in limbo land as it were.
Now that I'm reaching the point where I can somewhat formulate linear thought patterns, I'm going to try to write out what my day-to-day life is like and ask you all kindly if this sounds familiar to you.
First, I have pins and needles sensations in my feet always, shins always, hands sometimes, lips sometimes, breasts sometimes, knees, etc. It changes from from burning to buzzing to prickling, but what it really reminds me of is being a kid and you and a friend would squeeze your wrist to prevent the blood flow and hand would go numb and then a friend would touch the palm and release the wrist pressure, and as the circulation would come back to the hand, you could feel all the blood in the vessels/veins/arteries filling and moving through the hand as sensation would come back. That is the feeling--that I can FEEL the movement thru the veins. Of course, if you never played that game, you won't know what I mean!!
It is bilateral, and I am concerned that this would mean I do not have MS. Does it? I want to be diagnosed and treated and I'm closest to an MS diagnosis.
Other than that buzzing sensation, other sensations come and go. For instance, I just felt muscle tension and pain in my right forearm and right shoulder is heavy and hurting. While not gone, it is only quite bothersome for moments (usually) then fades into the background. My left jaw hurts. My jaw has been hurting on and off today and past few days but I have not had much jaw pain for the past year.
I'm trying to paint the picture that I just have these random sensations throughout my body from time to time--ALL the time. I just felt a stabbing in the back of my left eye. The eye is sore but it will be okay in a minute or two (usually).
There are times when I can barely feel the lower half of my body or it hurts but I can barely feel it too, which I know makes no sense. There was a period that I went through last year that the only way I was able to walk was because I told my leggs what i expected them to do--I could not feel them exactly, but I figured they should know what they were doing and I just started moving. THe right leg felt like it weighed a ton and the left leg was much better, but they were both problematic at that time. I could feel my hand when I touched my lower extremities but it felt light and after a few days I was able to feel just fine. However, I did have to have my daughter push me in a wheelchair because of instability when I went to the mall. Humbling, let me tell you.
Brain fog is the worse, and I get migraines/headaches. I was diagnosed with hemiplegic migraines in my early 20s and my brother gets them too. Inside I have to wonder if it is not MS, then it is something else neurological and genetic.
When all is going pretty good, I still fall every few weeks to months.
I also get sores on my tongue/painful swelling of tongue sometimes without visualization of anything and often with hard spots. Dentist and physicians have said it was nothing, but of course it is SOMETHING because it hurts so dang bad.
Eyes blur up. I've seen in black and white before. I have had everything go black and lost all vision for about 30 minutes.
I don't know how to put all the symptoms smoothly together to explain it. I have had incontinence problems on and off, unexpected and not related to lack of Kegel exercises. I have always been able to stop and start the flow. This time in 2006, I was in my car laughing and I started going, and did not stop until my bladder was empty. I was mortified. I have had bowel times like that too. Of course I was diagnosed with a spastic colon/irritable bowel syndrome. The funny thing to me is that I primarily suffer from chronic constipation. The thing about the bowel thing though, is one of the times that I lost that control, I was not aware I had. I said, "What is cold on my calf?" It was not diarrhea though soft. I was not sick; it just happened. At the time, I had a headache and back pain. So this was a period of time where I was not feeling the functions happening, though I did feel that I needed to go; I did not know I had already gone.
Sometimes showering is a nightmare because I have to on purpose lift my legs up over the tub, which is very high (not really, just sometimes feels like that) and sometimes I lose my balance when I wash my hair/close my eyes. Usually I'm just unsteady but sometimes it is a real task to try to manage.
I broke my ankle last year because the step was not where my foot landed--I failed to lift it to the right spot. I also have plantar fasciitis-type pain. Of course, some things are just what they are.
My hip, my left hip particularly, causes me no end to grief. I have had x-rays, cat scans. They determined I had scar tissue in the hip bone and that was the cause of my pain (from what I do not know).
17 years ago, I was in an auto accident, very mild but it was horrific for me. My body went into spasm in every part, and I got these shock sensations all over. I don't get them anymore except as above. These shocks were like being electrocuted. I was diagnosed with "whiplash and pinched nerves up and down the spine" and after a year of chiropractic care, I was assessed to be 11% permanently disabled. I'm wondering if I really could have just had MS. That accident changed my life, T-boned at about 15-20 mph, in that I have been plagued by down times since then. Prior to that, I had the buzzing sensations throughout my limbs on occasion, sometimes quite bad, but I never had horrific debilitating symptoms until that accident. For several years, I could no longer put my chin on my chest, but I can now.
Oh, another thing, when I get the bad episodes that last for a long while, weeks to months, I will be having headaches which I thought were hemiplegic migraines as I was diagnosed with those, but H.M. are not supposed to last more than a few days I read in some medical papers. ...oh, what was I saying... oh, in 2002, when I was having problems with blindness/color blindness, pain, enuresis, auditory problems like I could not hear but I could-like I was in a tunnel, ... and ADHD symptoms magnified, I was also having notable problems with my menses in that it was unusually heavy. I woke up in a puddle, for instance. I was really not doing well. At that time, the ARNP diagnosed with me with anemia, gave me B12 injections for a while, and was told if I had insurance she would have suggested and MRI.
I eventually got better, much better and forgot about it except that I always feel stuff in my body, like I've been saying. This year I have had a really bad episode that I went through last month, a lot like in 2002 but more cognitive problems, like really having dementia. I could not drive because I was overwhelmed by the complexity of understanding how to drive. I mean, I forgot how to use my computer mouse. Language skills were hard and I also had much difficulty reading. I was dyslexic-like in that I could not figure out if i typed words in order or not and I was having trouble reading them from left to right, like we do here in America. Fortunately, at the doctor's office I began having trouble saying what I was thinking, and she ordered the MRI with and without, did that 06/30/2011 and expect results in a week. Don't know if that will be all it takes, my symptoms and the MRI to diagnose or not... just trying to figure it all out.
I am in limbo holding on and wondering, does it sound like anyone else's course of events? Am I in the right forum??
Sometimes, that's the word. Sometimes this, sometimes that. I just feel crazy-
To be honest it sometimes sounds MSish and other times not, remember there are MS mimics that need to be ruled out, it could be one of those. The first part doesn't sound the way MS usually presents, and it does sound more like a circulation problem but still it could be nerve related.
I dont really know what to say, your definitely dealing with something thats not right and i have to wonder if these migrains are more complex and causing some of the problems, stranger things have happened.
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