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Old 08-20-2010, 03:46 AM #1
Jennyfoo Jennyfoo is offline
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Join Date: Aug 2010
Location: Foothills above Sacramento
Posts: 1
10 yr Member
Jennyfoo Jennyfoo is offline
New Member
 
Join Date: Aug 2010
Location: Foothills above Sacramento
Posts: 1
10 yr Member
Default New here

Hello! My name is Jenn and I was recently diagnosed with mild Chiari malformation after a few months of both me and a few doctors suspecting multiple sclerosis. I already have one autoimmune disease: ankylosing spondylitis, so the assumption it was another inflammatory autoimmune disease was logical. I'm glad it's not MS, but I don't know if this is much better. Lol.*

I had never heard of Chiari. My pcp didn't seem too worried about it, when I went in to review my MRI. All she said was that it can cause excess pressure with CSF, so be sure to let people know I have it if I end up in the hospital or ever need a spinal tap. She assumes my headaches are being caused by problems with my neck; facet arthropathy, arthritis, spondylosis, bulging discs(mostly thanks to the Ankylosing Spondylitis). But, I've had those issues with my neck for years, and the severe headaches are more recent.

I went home from my dr visit and immediately started researching Chiari on the web. I was amazed at what I read. My headaches are pressure headaches, begin at the base of my skull and upper neck and wrap around to my forehead and eye sockets. I can hear the pounding in my ears. I get them daily. and have for months. They are brought on or made worse by exertion, sneezing, stress, bending over. Also, my upper neck, where it connects to my head, is always painful and my muscles in my neck are very tight and strained.

In addition to the headaches, I've got tingling and numbness in both hands and up my arms a bit that waxes and wanes in severity: also in my feet and up my legs. I get sensations of warmth, of bugs skittering on my skin, itchies; especially prickly itchies on my head that drive me nuts. I've been suffering with extreme fatigue for a few months too, difficulty swallowing(pills always get stuck, sometimes food; feels like I have a lump in my throat), I get spacey and dizzy, I get a strange sensation of pressure in my head and ears almost like I'm underwater or my head is in a fishbowl; this almost always happens when I get stressed out, I get tinnitus off and on every day, i've been having problems with horrible profuse sweating that keeps getting worse; mainly on my face and head. I can't go anywhere or do anything without ending up drenched, my hair looking like I just got out of the shower. My body can't seem to regular temperature right. I get chills, but will sweat profusely and I get overheated really easily too. If I go into a cold room from being outside in the heat, it will trigger terrible sweating. It's bizarre and has impacted my life in such a serious way that I avoid leaving my home unless I absolutely have to. It's embarrassing and extremely uncomfortable. Last winter(mild here in CA), I had to wear hats and wrap scarves around my neck because I'd be freezing cold, but sweating like crazy. My doctors have blown off my sweating issues; blaming it on pain or on me being overweight. I've also gained about 20 lbs in the past year despite cutting calories and having stomach problems where I'll barely eat anything for days. I have gastroparesis which causes the stomach to empty slowly and I get nausiated, horrible indigestion, and very sick when I flares up. I just barely eat enough to keep my blood sugar from crashing when it flares up. I should be losing weight, not gaining.

Could Chiari be the cause the profuse sweating? I'm afraid that since my chiari is mild, I'll not be taken seriously. My MRI report does not say how many mm it is. I've got a follow-up with a neurologist next month. He's who ordered the MRI. I'm also trying to educate my pcp on chiari and get a referral to a neurosurgeon at the Sutter Neuroscience Institute that was recommended by the mother of a 4 y/o chiarian who had decompression surgery from my area.

So, there's my intro. Sorry it's so long. I'm 33, a stay-at-home mom with 4 great(most of the time) kids. I live in the foothills above Sacramento. Thankfully my hubby works from home, so when I'm not feeling well, which frankly is most of the time, he is able to help out a bit. All my kids are "special needs", the younger 3 having been adopted through foster care. It's very difficult with me being sick, but my 12 year old daughter has also been a huge help. We'd be in a serious mess without her and hubby's help.

Thanks for reading my novella,

Jenn
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