Toobcherished
03-31-2006, 12:07 PM
This may turn out to be long but I really need some advice here. PLEASE if you have the time to read this and answer I would be forever greatful to you. First off I am a 27 year old female and mother of 2.
This is some history of me
I absolutly can not tolerate heat, I do not go out in hot weather I stay in AC as much as possible or I get really sick like nauseated and I get a bad headache. I break out in to a huge sweat as soon as I step from the cool AC into the heat and sun. I also get hives if im out in it to long. I have to sleep with the fan blowing on me and half a leg out of the covers to cool my body temperature or I cant sleep. I trace this all the way back to my child hood when I refused to go out and play because of the heat. I hardly ever played outside! EVER! I did sleep alot however.
I was diagnosed with Rye syndrome when I was younger one summer, I was extrememly tired, low energy, wouldnt eat for a good week or so, I was hospitalized and test run on me and my docs at the time believed this is what I had. My mom was always a bit skeptical saying that at that time (1980 0r s0) there was such a over diagnosis of it and she knew she had NEVER gave me aspirin (primary cause)
I have never had energy, EVER! I slept alot as a child and if I could even till this day spend my entire day in bed I would.
I have ALWAYS had memory trouble...my mother would ask me to go into the kitchen to get her something and by the time I got in there to get it I couldnt remember why I was there. I would put biscuits in the oven and unless I set a timer I would forget I was cooking at all let alone I had something in the oven. I can watch tv and upon commercial turn to anther channel or fold laundry and forget I was watching a show I really wanted to see. Much less what the show was.
I have always had poor balance. I would constantly trip over my fathers feet when he was sitting in a chair or if I was just walking by him. I probably was one of the most clumsy kids ever. Im constantly tripping on something I didnt see or dropping something ( I blammed this on my huge chest and shoulders.)
I always walk into walls. I dont judge distance very well it seems and I am constantly skimming my shoulder into a wall. I have bruised my self badly. I do this multiple times a week. Again I have blammed it on my huge chest and broad shulders through the years.
I cannot walk straight it seems. When I walk I walk at an angle normally to the left. I dont notice this on my own my friends when I was younger and my husband now will say, HEy will you stop bumpin into me or would you just walk straight. The person is always walking at my left side when I do this. If Im walking and talking I will do it every time if im concentrating on it I can somewhat correct it.
I have periods where my feet or a part of my leg or my entire hand will go numb.
I started noticing blurry vision in school however not on close up items only for long distance so now I wear glasses when I drive or need to shop and read signs.
I have been diagnosed with Mono 2 times. My first bout was awful I had spleen issues the first 4 weeks but but the mono lasted months as far as just not haveing energy Second time I had mono I told the doc I had it not but a year before and he told me thats impossible you only get mono once and then you become immune. If im stressed or over worked my symptoms of my body rejects it and I get extremely tired, lazy and unmotivated. Ive supected EBV but see how hard soemthing like that to diagnosed and not everything fits my symptoms. Especially because this stuff comes in bouts. My bouts are basically tired ALL the time to where I cant manage, joint aches and pains, hard to focus. It last me weeks. My last bout I blammed on ppd after my daughter was born my husband was deployed and I had a very hard time but the symptoms didnt show themselves until 6 mons after she was born and I wasnt depressed! I was just exhausted and extrmemely achy and I would get dizzy when I got up and my world would spin around. Not just upon getting up from a sitting postion but just turning around or standing to long. I went to the doc and my blood pressure was a bit elevated and my Iron was a little low but my thyroid was fine (what I suspected was the prob) I got put on bp meds and water pills and Iron supplements and within a week I felt much better. Now that im still taking all these things I found my bout starting to return. Nothing severe, nothing unmanagable but at the same time I know that what I have been going through since I was young HAS to point to something. But my symptoms are so vague and I MANAGE throught these bouts so I wonder if it hasnt been all in my head. Ive had alot of test done this last bout which was back in Sept or Aug and everything came back fine. The test were blood test.
Well thats basically my life story I really hope someone has read through all of this and perhaps it sounds like their story.
This is some history of me
I absolutly can not tolerate heat, I do not go out in hot weather I stay in AC as much as possible or I get really sick like nauseated and I get a bad headache. I break out in to a huge sweat as soon as I step from the cool AC into the heat and sun. I also get hives if im out in it to long. I have to sleep with the fan blowing on me and half a leg out of the covers to cool my body temperature or I cant sleep. I trace this all the way back to my child hood when I refused to go out and play because of the heat. I hardly ever played outside! EVER! I did sleep alot however.
I was diagnosed with Rye syndrome when I was younger one summer, I was extrememly tired, low energy, wouldnt eat for a good week or so, I was hospitalized and test run on me and my docs at the time believed this is what I had. My mom was always a bit skeptical saying that at that time (1980 0r s0) there was such a over diagnosis of it and she knew she had NEVER gave me aspirin (primary cause)
I have never had energy, EVER! I slept alot as a child and if I could even till this day spend my entire day in bed I would.
I have ALWAYS had memory trouble...my mother would ask me to go into the kitchen to get her something and by the time I got in there to get it I couldnt remember why I was there. I would put biscuits in the oven and unless I set a timer I would forget I was cooking at all let alone I had something in the oven. I can watch tv and upon commercial turn to anther channel or fold laundry and forget I was watching a show I really wanted to see. Much less what the show was.
I have always had poor balance. I would constantly trip over my fathers feet when he was sitting in a chair or if I was just walking by him. I probably was one of the most clumsy kids ever. Im constantly tripping on something I didnt see or dropping something ( I blammed this on my huge chest and shoulders.)
I always walk into walls. I dont judge distance very well it seems and I am constantly skimming my shoulder into a wall. I have bruised my self badly. I do this multiple times a week. Again I have blammed it on my huge chest and broad shulders through the years.
I cannot walk straight it seems. When I walk I walk at an angle normally to the left. I dont notice this on my own my friends when I was younger and my husband now will say, HEy will you stop bumpin into me or would you just walk straight. The person is always walking at my left side when I do this. If Im walking and talking I will do it every time if im concentrating on it I can somewhat correct it.
I have periods where my feet or a part of my leg or my entire hand will go numb.
I started noticing blurry vision in school however not on close up items only for long distance so now I wear glasses when I drive or need to shop and read signs.
I have been diagnosed with Mono 2 times. My first bout was awful I had spleen issues the first 4 weeks but but the mono lasted months as far as just not haveing energy Second time I had mono I told the doc I had it not but a year before and he told me thats impossible you only get mono once and then you become immune. If im stressed or over worked my symptoms of my body rejects it and I get extremely tired, lazy and unmotivated. Ive supected EBV but see how hard soemthing like that to diagnosed and not everything fits my symptoms. Especially because this stuff comes in bouts. My bouts are basically tired ALL the time to where I cant manage, joint aches and pains, hard to focus. It last me weeks. My last bout I blammed on ppd after my daughter was born my husband was deployed and I had a very hard time but the symptoms didnt show themselves until 6 mons after she was born and I wasnt depressed! I was just exhausted and extrmemely achy and I would get dizzy when I got up and my world would spin around. Not just upon getting up from a sitting postion but just turning around or standing to long. I went to the doc and my blood pressure was a bit elevated and my Iron was a little low but my thyroid was fine (what I suspected was the prob) I got put on bp meds and water pills and Iron supplements and within a week I felt much better. Now that im still taking all these things I found my bout starting to return. Nothing severe, nothing unmanagable but at the same time I know that what I have been going through since I was young HAS to point to something. But my symptoms are so vague and I MANAGE throught these bouts so I wonder if it hasnt been all in my head. Ive had alot of test done this last bout which was back in Sept or Aug and everything came back fine. The test were blood test.
Well thats basically my life story I really hope someone has read through all of this and perhaps it sounds like their story.
Sponsor
Keeta
03-31-2006, 01:24 PM
I'm so sorry you have had to experience all of this in your life. I was just wondering... have you seen a Neurologist and explained your sx? If not, that is where I would begin. It definately sounds like this needs to be looked into.
Toobcherished
03-31-2006, 06:06 PM
No I havent had neurological test done and wouldnt even know where to begin. We have to deal with military doctors so how I would even explain anything enough to get a referral is even up in the air for me. First though I need to know which of those things if any are symptoms and if they could start that young.
dwallech
03-31-2006, 06:23 PM
Hi,
It sounds exactly how I felt as a child in the 1960's etc except I had whooping cough, put still minded the heat even before that as I would want to lay on the cool linoleum. I get sick from the heat. I had blood work for Antinuclear Antibodies, and had the in depth test as there are two and one is more in depth. I was initially diagnosed with Lupus, the latest test shows I have mixed connective tissue disease (lupus, schleroderma etc) Since then I had seizures, then two mini strokes, one last Feb and one this Feb, and MRI now showing damage in brain and drs are leaning towards MS. I would ask your dr to do ANA testing and start from there. Hope this helps! :wave:
It sounds exactly how I felt as a child in the 1960's etc except I had whooping cough, put still minded the heat even before that as I would want to lay on the cool linoleum. I get sick from the heat. I had blood work for Antinuclear Antibodies, and had the in depth test as there are two and one is more in depth. I was initially diagnosed with Lupus, the latest test shows I have mixed connective tissue disease (lupus, schleroderma etc) Since then I had seizures, then two mini strokes, one last Feb and one this Feb, and MRI now showing damage in brain and drs are leaning towards MS. I would ask your dr to do ANA testing and start from there. Hope this helps! :wave:
LaLady
03-31-2006, 09:50 PM
We were military for 30 years and had wonderful luck with our medical care. The Army sent me to 3 different neurologists last year cause I couldn't get a diagnosis. I had CT scans, 4 MRI's, nerve testing, gallons of blood work and a lumbar puncture.
I was diagnosed with MS about a month ago and had my second Avonex shot today. My pharmacist lists Avonex at a pershot price of $400. I pay 3$ a month co-pay!
You need to make your list, consult with your PCP and say you really need referrels to specialists. I saw internists, dermotologists, opthamologists, allergists, physical therapists and a few more.
You must talk this over with your physician. We are not diagnosticians; we can only tell you what happened to us.
All the best to you, please know you can get help. :)
I was diagnosed with MS about a month ago and had my second Avonex shot today. My pharmacist lists Avonex at a pershot price of $400. I pay 3$ a month co-pay!
You need to make your list, consult with your PCP and say you really need referrels to specialists. I saw internists, dermotologists, opthamologists, allergists, physical therapists and a few more.
You must talk this over with your physician. We are not diagnosticians; we can only tell you what happened to us.
All the best to you, please know you can get help. :)