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Do anyone struggle with a foot or leg, etc?

I got the CM type 1, as a bifind when they were more concerned if I had a CNS-vasculitis after a MRI, where the neurologist who had sent me for it, suspected that (vasculitis) from the symptoms that bothered me, despite going there for the foot that had been bothering me for years with discoloration, swelling and pain. But also mentioning pressure and pain in the ears and pain going deep into one or both eyes, light- and sound sensitivity in periods, pain in different spots in the head, feeling like someone used a knitting stick stabbing into it, or just areas with extreme pain. The room spinning around, and goosebumps on my legs, despite bloodflow and 25C in the room. I struggle with the vision being good one day or week, the bad the other.
I had swallowing troubles most of my childhood, with tablets, etc, then got better and some years ago was surprised that I didn't manage to swallow the water or juice in my mouth.
What I forgot to mention (I think) was when I struggeled to sleep, I did fall asleep, but could wake up not understanding why I didn't fall asleep again, until I long after started to think if it could be that I needed to pee, I didn't get any signal that I needed to pee from the bladder, but when I pushed it, then I got the response,and understood it was the case. In another period it was because of bad backpain, that let me sleep when I used a TENS on my back until it went to sleep mode, which helped with the pains.
Also not managing to move my arms, or my eyes suddenly closing, no matter how hard I tried to keep them open, after awhile, one at a time, which is, and was horrible when it happens, mostly when I've done much (which isn't much at all), sometimes like my body falls asleep but not my brain, other times, I'm just totally gone, and by time after I've fallen asleep in the wheelchair, on the toilet, in the shower, and standing leaning towards the wall, until I start freezing, or my leg is about to give in. Sometimes not able to move my legs, especially when tired from doing stuff.
I have RA (Rheumathoid arthritis) and B12 deficiency in addition to CM1, so in the end the neurologist meant it could come from the RA, but I don't know anyone with RA having the same symptoms, and I've had b-12 deficiency since I was 19, (37 now), and been very low, but not had the same symptoms except for a few, at the time it was discovered back then I was pretty low on it, and iron, and had  too low or too high TSH and some gammaglobulins, but not the RA on that time.
These things started some years ago, with the pressure in the ears not wanting to go away, then other things have came after. The last MRi I took showed earlier arthritis in the Atlanto-axial joint, and several white T2 high flair spots in the frontal and pariteale lobe (more than the norm for the age). It also showed some of the white spots on the first MRI. In addition to the Chiari malformation type 1, which they didn't bother much about, only if I had severe headaches...but not sure if she asked related to the possible vasculitis or the CM. And also remembered then that I had had trouble with whisteling, which I never have troubled with, it has occured after too, but not when I was there, and trouble remembering.
The last year had more trouble with tinnitus.

What I'm wondering on is:

* Have anyone experienced trouble with their foot or leg? Pain, especially from pressure (stepping down, walking), swelling and discoloration when active? It gets worse when being active, it calms down when I rest or elevate it. No difference if cold or hot water on it.

* Does anyone else have RA or b12 deficiency (shots)?

* Does anyone have white spots in the brain too (white mass)?

* And has anyone experienced memory loss (short term memory for weeks and months, it improved, but I didn't remember what to ask the doc right after thinking about it), and fatigue and back pain after spinal tap?
After the hospital I started mixing languages, which I had no trouble with separating before I was admitted.

* I read that some of you drink very much, does anyone have it the opposite way?

I've figured out the last 2 months and more I get better when lying down or resting...means I get to do very little, which is depressing...but at least I experience less symptoms, as long as I rest and are careful with the position I sit in or how fast I turn my neck. I bought a light ball one day, and kicked it while on crutches for a short while, then when sitting in the wheelchair... and the symptoms came back, I fell unvoluntarily asleep in the wheelchair, since my eyes denied to cooperate, and my body shut down. My mom didn't understand that I didn't want to sit in the wheelchair sleeping (everything but comfy)...neither that I really wish to do things and help, or have my old active life back, I had a active job before/while I got RA, and have always been active and loved challenges. When driving past a temporary amusement park with thrills I really love/loved, I ended up crying, because I miss stuff like that so much, and I don't take the chance now, as how my body is, but also that I can get dizzy just turning too fast in the wheelchair some days, and the neck is unstable.
Having RA was a challenge in itself, but at least I managed to do more than now, and already then they talked about getting me on disability, which I was very against at the time, when starting getting trouble with the other things some years back was an even greater challenge, as I've never managed so little, even though I try, so now I'm glad I have it, despite wishing for a normal life, I at least don't need to worry about having economy for food, etc.
But how to explain for the family when no one seems to understand much, no matter how many times I try to explain?

Sorry for this looong loong post, taken me some hours with breaks.


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620923 tn?1452915648
COMMUNITY LEADER
Hi...it sounds like you possibly have a neurogenic bladder......something to have tested. I had times where I would wake up either very warm to hot...but no sensation to relieve my bladder...but once I had I slowly returned to a more comfortable temp and was able to go back to sleep. Sometimes I would get a shooting pain up and down my spine to the point I was hunched over....again no sensation to relieve my bladder, but once I had the pain subsided.
You mentioned your TSH levels...many with Chiari also have Hashimoto's thyroiditis...so do have more then just your TSH checked....Free T3 and Free T4 levels as well as getting a ultra sound of your thyroid to make sure you do not have nodules forming.
I also deal with tinnitus , it  seems to be common for those of us with Chiari.....
Have they ruled out POTS and Ehlers-Danlos? These conditions can account for some of your other symptoms too....
We tend to have more then just Chiari...and they can be autoimmune disorders so, there is a gamut of testing to rule things out and determine just what is going on.
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