I originally posted this in the neurology forum and it was suggested I try here. I had never heard of Chiari before and would be interested to know if anyone with it has had similar symptoms. Btw my migraines are like a sharp pain on left or right side of my head and at the back of it too and are worse when I tilt head forward if thats relevent. ;
Hi.This is my first post. Firstly I apologise if this ends up being quite long as I have had a range of symptoms for 6 years now. Just so you know, one thing I have NEVER suffered from is hypochondria! If anything I feel bad for bombarding my dr with my list of ailments. But my problems are very real and have had a dramatic effect on my life, before this started I was a normal young woman and now at 25 I am increasingly dependant on my mother and am rarely able to leave the house. Here goes;
At age 19 I developed a severe lower back pain that started worse on the left side and went down my hips and legs. I had suffered episodes with back pain since age 13 although I'd never had an injury, but this time was much worse and didn't go away, spreading further up. A few months' later I developed bowel problems mostly cramps and constipation but again I wasn't worried as I'd had cramps before and always put it down to IBS. Again the problems didn't go away but got worse, causing diarrhoea, occasional blood in stools, fissures, piles, stomach pain, acid reflux, nausea, vomiting, weight loss (I currently weigh 6.5 stone despite trying to eat a normal diet.) I sometimes have 'attacks' of pain+ vomitting that can last for days and cause me to bring up green bile. I had a colonoscopy and endoscopy a few years back, both showed nothing unusual. I started getting numbness and pins and needles/burning sensations on the outside of my thighs esp. when I was physically active. I saw a neurologist about 3 years ago who said this was 'consistant with bilateral cutaneous nerve disturbance' and noted that an MRI I'd had of my lower back showed my spine to be 'absolutely straight without the normal lordosis' he said this could be due to extreme muscle spasm or something else. He said my symptoms were 'nonspecific and probably unrelated' and didn't order any further tests. By this time I had also developed shooting pains in my left wrist and would sometimes drop things without warning, usually with the left hand. Blurred vision, difficulty focusing. Low blood sugar (hypoglycaemia) a few hours after eating which is eased by more eating but tested negative for diabetes. I believe this may be a secondary symptom of the stomach problems. My bowels are now incontinent and I have difficulty emptying my bladder completely. Heart palpitations or 'flutters' sometimes with chest pain. As time has gone on I have developed increasing fatigue, tiredness and weakness. This has been a gradual decline although I have noticed it is worse in the summer. I now have to spend most of the day in bed.
More recently I have developed a constant ringing in my ears which is worse on the left side and when I tilt my head back. Frequent migraines. Jaw pain like toothache but I have no cavities. Poor balance and dizziness which again has gotten worse over time. I use a walking stick to stop me falling over and if I close my eyes I am completely unable to balance, even just standing still! The numbness and pins and needles I felt in my legs is now occurring all over my body, albeit more dispersed. Its worst in my legs, hands and face. These sensations can be anything from numb to prickly to electric shocks or vibrations. My left hand now twitches sometimes as do my legs. I have noticed difficulty tightening my calf muscles unless I try hard and a loss of muscle tone even though I try to keep my legs moving. My toes curl up often. And when I'm tired I have to walk with my heels raised to stop my legs giving way. On occasion I've had a kind of temporary paralysis in a leg where for a few minutes I can neither feel nor move it, only for the feeling to come back in a surge of pins and needles.
One thing which I am a bit embarrassed to admit is that I sometimes have loss of concentration and poor memory. This is very frustrating as I've always had such a good memory in the past. One occasion that really frightened me was when I forgot the name of someone I had known for 3 years! The most recent development is 'lump in the throat' or globus sensation with a dull aching pain at base of throat. My GP believes this is due to acid reflux and I agree with him as it does seem worst at those times. However my uvula has now deviated to the right and he doesn't know if that's connected but said the uvula isn't necessarily symmetrical (mine was until now). Sometimes when I drink fluids a bit comes back up into my mouth and nose which scares me as I fear I might choke! Higher up in my throat there is a strange 'loose' sensation on the left side and when I look into my mouth with a mirror I can see that as well as the uvula my throat doesn't look symmetrical anymore, the tonsils are more visible on the left side and the soft palate hangs slightly different. This wouldn't bother me if not for the swallowing problem.
I'm thinking neurology may be key in all this i.e. the strange tingling etc sensations. I have heard of various neurological conditions but they sound very complex and I have never had a brain scan. The worse my problems get the more I'm starting to think there must be one underlying cause but I'm at a loss to explain it and the doctors have seen me in various departments only to come up with no explanation. Normal 25 years olds do not have this many separate problems esp. as I never smoke, drink, or take recreational drugs. My current medications are tramacet, lansoprazole, gaviscon and frovatripan. I'm scared that I don't know what's coming next and I have no diagnosis to prepare myself if it gets much worse. Sorry to go on so much! Any possible medical explanations or similar experiences would be much appreciated. Thank you.
Many of the symptoms you describe are consistent with Chiari Malformation but could be due to any number of Neurological or Central Nervous System Disorders, the only way you can be 100% sure is by having an MRI of your Brain & C Spine.You have a lot going on and you need to push your doctors, they need to get to the bottom of what is going on.
Many here including myself have spent years dealing with Doctors who either dont feel CM can cause problems or have never heard of CM.
Talk to your GP about getting an appointment with a Neurologist or better again ask him to organize an MRI of Brain & C spine for you and work from there.
hi there and welcome to our little family! i hope we will be able to help you figure things out here! you have been given the best possible advice already. find a nl to get you in to have an mri of your brain and c-spine asap! you can try telling him/her that you have done some research and suspect chiari malformation, but then again, that may just sabatoge you.....depending on the relationship you have with your dr. please let us know how you make out!!
Thanks for replies. Yes I have been thinking I'll need to push to see a neurologist again and have more tests done. I hadn't even considered neurology again until recently because the last time I saw one he did a very basis exam and didnt think I needed further testing, but many of the symptoms I have now weren't present then. The MRI I had before was just of the lumbar spine not cervical or brain because at first they suspected Ankylosing Spondylitis. I never had a barium swallow and I think it would be difficult to convince them to do one - it took me a couple of years of asking various gp's just to get the colonoscopy! My current gp has been very helpful in the past with refferals etc and I think (fingers crossed) he will help me out with this if I really make it clear I need this.
Best wishes to all of you with your own progress. Thanks peoples :)
I really think that for now you really need to push for a head and neck MRI. then go from there, it's better to investigate further, know your body push for answers, sounds like what ever it is is affecting your quality of life greatley, ask for the MRI and oncce you get the results go from there, like everyone has said, your symptons could be any number of things, chiari included. But MRI is the gold standard to test.
Just to update I now have an appointment confirmed for neurology dept. in late january (earliest one that was offered). I did push for an MRI but my dr said the hospital wouldn't grant one on his request alone, so I will have to push the neuro for one. Fingers crossed!
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