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Please, I really need help!!!!
Jun 27, 2009 06:43PM
- 12 comments
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If you have read either or all of my previous journal entries, "Hoping For Help (Really Discouraged) ", "I'm losing myself" and/or "Very Depressed and Looking for Help!!!!!!!!! :(" then you probably have a good idea of what I'm going through right now. Luckily the college problems were straightened out not that long ago, but I'm still not happy. I'm not because my Unknown medical problems are getting much worse and I'm sooo depressed and discouraged, I JUST DON'T KNOW WHAT TO DO ANYMORE!!!!! :{
I have severe Asperger's Syndrome as well as several other problems that the doctors weren't even able to find yet and just blame it all on stress. My Counselor is pretty much saying it is stress too, but I KNOW IT ISN'T!!!! She said though that the weird colors that I have been seeing puzzles her, so maybe she is having second thoughts.
I have been having a cold clammy sweat on my Forehead everyday now as well as extreme heat intolerance. I have had an "Electrical" shock-like feeling shoot down my spine today and then all of a sudden my left leg went numb and I was literally "freezing". I was actually shivering and felt "weird". Weird as in my daze feeling I have 24/7 multiplied in strength and I felt as if I was flying and that I was very "light". I had a really bad 13mm Chiari Malformation before which was cured by surgery, but I still see weird Kaleidoscope lights/colors in my vision 24/7 accompanied my a daze-like sensation. I get really dizzy at times. When I walk, the walls and that seem to produce a "tunnel" effect due to my vision and it makes me incredibly dizzy. I have been taking my side off on the walls and doorways a lot more often now as my perception is "whacked" and I almost fell down the stairs due to my legs giving out from underneath me. :( These I believe are all neurological symptoms of a much bigger problem than the Chiari, but I just don't know. I did hit my head extremely hard before and my nose ended up bleeding from the blow to the left side of my head.
I am soooooooooooooooooooooooooooooo Depressed and I just want to SCREAM!!!!!!! PLEASE HELP ME, ANYONE!!!! Especially if you are having a similar problem. If there are others going through the same thing, I'll feel more reassured that I don't have some rare disease that no one else has. My Neurologist, the only doctor that seems to care, said that he honestly doesn't know what is wrong but he is trying to find answers.
Have tried Depression Medication as well as Migraine, Pain and some others but my doctor took me off of it since I'm not feeling any relief. When I asked him about the possibility of it being a rare disease, he said that it might be.
I have looked at the symptom checker and it sounds almost like I have bleeding in my Brain, but I'm not sure. :( I wish I would know what is wrong with me!!!!!
Please if anyone can help me or give me any advice it would be greatly appreciated!!!!! :) Thanks so much!!!!! If you have any questions, please feel free to ask me anything and I'll be sure to get back to you as soon as possible. :)
I have severe Asperger's Syndrome as well as several other problems that the doctors weren't even able to find yet and just blame it all on stress. My Counselor is pretty much saying it is stress too, but I KNOW IT ISN'T!!!! She said though that the weird colors that I have been seeing puzzles her, so maybe she is having second thoughts.
I have been having a cold clammy sweat on my Forehead everyday now as well as extreme heat intolerance. I have had an "Electrical" shock-like feeling shoot down my spine today and then all of a sudden my left leg went numb and I was literally "freezing". I was actually shivering and felt "weird". Weird as in my daze feeling I have 24/7 multiplied in strength and I felt as if I was flying and that I was very "light". I had a really bad 13mm Chiari Malformation before which was cured by surgery, but I still see weird Kaleidoscope lights/colors in my vision 24/7 accompanied my a daze-like sensation. I get really dizzy at times. When I walk, the walls and that seem to produce a "tunnel" effect due to my vision and it makes me incredibly dizzy. I have been taking my side off on the walls and doorways a lot more often now as my perception is "whacked" and I almost fell down the stairs due to my legs giving out from underneath me. :( These I believe are all neurological symptoms of a much bigger problem than the Chiari, but I just don't know. I did hit my head extremely hard before and my nose ended up bleeding from the blow to the left side of my head.
I am soooooooooooooooooooooooooooooo Depressed and I just want to SCREAM!!!!!!! PLEASE HELP ME, ANYONE!!!! Especially if you are having a similar problem. If there are others going through the same thing, I'll feel more reassured that I don't have some rare disease that no one else has. My Neurologist, the only doctor that seems to care, said that he honestly doesn't know what is wrong but he is trying to find answers.
Have tried Depression Medication as well as Migraine, Pain and some others but my doctor took me off of it since I'm not feeling any relief. When I asked him about the possibility of it being a rare disease, he said that it might be.
I have looked at the symptom checker and it sounds almost like I have bleeding in my Brain, but I'm not sure. :( I wish I would know what is wrong with me!!!!!
Please if anyone can help me or give me any advice it would be greatly appreciated!!!!! :) Thanks so much!!!!! If you have any questions, please feel free to ask me anything and I'll be sure to get back to you as soon as possible. :)
You poor thing!!
I wish I had some answers, but have no knowledge of Neurology, and no experience.
I know it's nothing like you are feeling probably, but I once had weird symptoms (tremendous unexplained dizziness which recurred twice, plus heat intolerance and then suddenly going cold....'electrical shock' feelings in one leg....plus great tiredness...then it would all be gone, and come back again some time later) That was all to do with hormonal upsets around the Menopause, and nothing was found otherwise to be wrong with me. Also I don't get all those things now. Apart from hormones, there was no explanation offered for those symptoms.
But the lights and flashes you get COULD be symptoms of Migraine(?)
I wish I had some answers, but have no knowledge of Neurology, and no experience.
I know it's nothing like you are feeling probably, but I once had weird symptoms (tremendous unexplained dizziness which recurred twice, plus heat intolerance and then suddenly going cold....'electrical shock' feelings in one leg....plus great tiredness...then it would all be gone, and come back again some time later) That was all to do with hormonal upsets around the Menopause, and nothing was found otherwise to be wrong with me. Also I don't get all those things now. Apart from hormones, there was no explanation offered for those symptoms.
But the lights and flashes you get COULD be symptoms of Migraine(?)
I wish I had some answers too. Have they taken an MRI of your brain recently? Perhaps that's something your neurologist should do?
I have a family member who went through some frustration with their medical symptoms for a long time too. It was so difficult watching him suffer. I know it's frustrating when you can't get a diagnosis and know something is wrong.
I will keep you in my prayers and will say prayers that your medical providers will be able to find out what's going on and treat you properly.
I'm so sorry!
Hugs,
Janet
I have a family member who went through some frustration with their medical symptoms for a long time too. It was so difficult watching him suffer. I know it's frustrating when you can't get a diagnosis and know something is wrong.
I will keep you in my prayers and will say prayers that your medical providers will be able to find out what's going on and treat you properly.
I'm so sorry!
Hugs,
Janet
Sorry you are feeling bad, ground yourself are your family around if they are go and communicate with them, dont be alone, could be a panic attack, it will pass you need to STOP thinking no more thoughts you are okay if you feel that something is going to happen to you go to the ER especially as you said you hit your head it is always better to get your self checked out, if it is anxiety and panic, thenuse distraction and as Joyce katherine has said Breathing ..start to breathe slowly in and out focus on that and only that .say to your self I am okay nothing is happening to me... It will pass,. Rmember it is always our thoughts that make us feel bad, how are you doing now?
come on masie how are you doing?????
I'm sorry. :( My Mom is trying to help me out as well with my problems so I'm able to speak to her, but she doesn't know what is wrong with me neither.
I'm feeling very depressed and like I don't know what I should do anymore. I just don't know. :( I having a very bad daze yet and just don't feel right so I don't know.
I'm feeling very depressed and like I don't know what I should do anymore. I just don't know. :( I having a very bad daze yet and just don't feel right so I don't know.
Thank You all for your kindness and concern, it means a whole lot to me!!!! :) :) :)
My doctor thought that the vision problems might be caused by some sort of migraine and he has ordered that I try taking migraine medication for awhile, but unfortunately it didn't provide any relief. :( I am very tired lately and all I feel like I want to do is sleep. Very bad fatigue. :(
Oh, Mazie,....I wish I could give you an extra gentle hug, and re-assure you that all will be okay, in person. Since it is not possible, I'm sending you priority cyber huggies and hope it will comfort and cheer you up a bit.
I had many similiar neurological problems ... the electrical shock like pain penetrating my legs, thigh, spine.....then disappeaers until the next go-around. It could be days, weeks, months for me. I'd have fever all over, at the same time, I shiver with chills from inside. Often, I had to take a long bath and warm up, even when it is 80 dgrees in the house.
My doctor explained to me, it could be some internal chronic infection. It could also be part of my ME-CFS.
I also have that very space feeling frequently..it is extremely frustrating when we cannot tell which symptoms begins with what illness, and ends with which.
Try not to be discouraged or depressed over what answers you haven't found. It will only excerbate your symptoms and make them so much harder to bare. Make sense? With all your friends cheering you on here, one of us will be able to figure something out for you. I heard that Penn State has very good medical school (hope I'm not wrong about it), perhaps you could write them and see if they will be able to offer any insight?
If Migraine medicine doesn't help, I'd suggest that you stop taking it. Too many different meds can cause undesirable interactions (although it may not be whey you feel so miserable physically).
Please keep us up to date on how you are doing. You're very much loved here.
Carebear hugs,
Kit
I had many similiar neurological problems ... the electrical shock like pain penetrating my legs, thigh, spine.....then disappeaers until the next go-around. It could be days, weeks, months for me. I'd have fever all over, at the same time, I shiver with chills from inside. Often, I had to take a long bath and warm up, even when it is 80 dgrees in the house.
My doctor explained to me, it could be some internal chronic infection. It could also be part of my ME-CFS.
I also have that very space feeling frequently..it is extremely frustrating when we cannot tell which symptoms begins with what illness, and ends with which.
Try not to be discouraged or depressed over what answers you haven't found. It will only excerbate your symptoms and make them so much harder to bare. Make sense? With all your friends cheering you on here, one of us will be able to figure something out for you. I heard that Penn State has very good medical school (hope I'm not wrong about it), perhaps you could write them and see if they will be able to offer any insight?
If Migraine medicine doesn't help, I'd suggest that you stop taking it. Too many different meds can cause undesirable interactions (although it may not be whey you feel so miserable physically).
Please keep us up to date on how you are doing. You're very much loved here.
Carebear hugs,
Kit
hey chicka,
keep your head up. Kit is aiming in the right direction-- staying positive is the best thing for you with or without answers; it has taken me a few years to understand this for myself. Its not easy but you need to stay strong-- you have to want to stay strong for yourself. Keep fighting!! You're your best advocate!! If you feel something is diffferent from what they're saying, its likely right and keep at it. Get second opinions, third and fourth ones! But make sure you talk to someone about your feelings of depression. I'm not a person that pushes medications or always encourages them, but there are a means to an end and because you need to keep positive, sometimes anti-depressants enable you to be a more upbeat person to fight this. As well, I highly recommend speaking with a psychologist just because this is all so frustrating-- have no shame, I see one one myself once a month to talk about the medical system and why its so frustrating to me with my problem. Its not fun or easy not knowing what's going on, and sometimes you need to have someone listen from another point of view-- this is very important, even if you dont see it as such. If you haven't gone, I suggest go as soon as you can.
Have you tried acupuncture? have you thought about putting your focus on symptom management versus finding the exact 'problem'? No matter what the problem is, even if solved, it doesn't mean there will be a solution, so learning to deal with the symptoms now might alleviate some of the anxiety and feelings behind the symptoms, get what I mean?
I hope all the best for you,
have a good sleep
Dana
keep your head up. Kit is aiming in the right direction-- staying positive is the best thing for you with or without answers; it has taken me a few years to understand this for myself. Its not easy but you need to stay strong-- you have to want to stay strong for yourself. Keep fighting!! You're your best advocate!! If you feel something is diffferent from what they're saying, its likely right and keep at it. Get second opinions, third and fourth ones! But make sure you talk to someone about your feelings of depression. I'm not a person that pushes medications or always encourages them, but there are a means to an end and because you need to keep positive, sometimes anti-depressants enable you to be a more upbeat person to fight this. As well, I highly recommend speaking with a psychologist just because this is all so frustrating-- have no shame, I see one one myself once a month to talk about the medical system and why its so frustrating to me with my problem. Its not fun or easy not knowing what's going on, and sometimes you need to have someone listen from another point of view-- this is very important, even if you dont see it as such. If you haven't gone, I suggest go as soon as you can.
Have you tried acupuncture? have you thought about putting your focus on symptom management versus finding the exact 'problem'? No matter what the problem is, even if solved, it doesn't mean there will be a solution, so learning to deal with the symptoms now might alleviate some of the anxiety and feelings behind the symptoms, get what I mean?
I hope all the best for you,
have a good sleep
Dana
Hon maybe you need a new MRI to see if something else is going on. Or even if you have a new problem . Dont assume Everything is chiari related . Also if you dont have a chiari expert , surgeries are known to fail . Please get to the dr. Take care .
This Dr. in PA is tops with Chiari . Try to get referred to him.
http://findadoc.upmc.com/PhysicianBioQuery.aspx?ID=25001900&A=
http://findadoc.upmc.com/PhysicianBioQuery.aspx?ID=25001900&A=
I think a cranial CT scan is best for checking on bleeds in the brain. (When you hit your head that hard, you really should go to the Emergency! *hugs*)
You might want an MRI too though to recheck your Chiari. Maybe you should try visiting the Chiari Institute.
I know you said you were going to some kind of specialist for your eyes... Were you able to yet? How did that go?
Coolings vests are great for heat intolerance. I just got one for this summer, and it's working great! (By the way, so sorry my post is so random, I'm sleepy right now, but had to post when I read your journal.)
You might want an MRI too though to recheck your Chiari. Maybe you should try visiting the Chiari Institute.
I know you said you were going to some kind of specialist for your eyes... Were you able to yet? How did that go?
Coolings vests are great for heat intolerance. I just got one for this summer, and it's working great! (By the way, so sorry my post is so random, I'm sleepy right now, but had to post when I read your journal.)
I just wanted to say im here for you. I was depressed about three months ago. Its awful i know. sounds like you have alot more going one. Im sorry your feeling this way........... is it warm out there?
missy
missy
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