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MS? What's Wrong With Me?
I have been getting progressively worse over the past 5 years with an odd array of ailments.
Originally I was given antidepressants and told 'stress' in my life was the culprit.
I'm sure I have a lot of stress but none of the 5 antidepressants made the symptoms ease or go away.
So it was off to a new doctor. My first and most annoying complaint was extreme fatique and brain fog. I used to joke with friends saying I had early alzheimers because I couldn't remember anything. The fatigue got to the point that I woke up at 5am, took 60mg of Aderral (prescribed for my fatigue), went back to sleep till 6am, made my son breakfast, took him to school, worked out at the gym with a trainer, came home and slept till 3pm when it was time to pick up my son. I would then help him with homework, fix some pre-made dinner, and be on the couch by 7pm. I had to fight to stay awake. Luckily I have a great ex-husband who would happily take my son when the fatigue got too bad.
That was 3 years ago. Now I had to move into my ex's house because I haven't been able to work for 4 years and can't care for my 12 year old on my own.
The Aderral never helped much, they even had me adding 30mg at 12 or 1pm but it didn't help so I stopped taking it. I was even given long acting versions of Aderral, Ritalin, and any other amphetamine you can name to no avail. I must have 19 bottles of full 'upper' type medications that never did more than put a bandaid on a bullet wound.
I kept telling my doctor 'if 80mg of Aderral doesn't give me energy, don't you think something else is wrong?'
They said we did blood tests and everything looks normal.
OK don't mean to focus on the fatigue but it's hard to explain since fatigue is different for everyone. Mine has gotten so bad that over the past year I'm able to get off the sofa bed, 3 times a week for about 4 hours.
I was the workout queen and loved being in the gym and active. I had been exercising 4-5 days a week for 25 years. Im 44 1/2 now.
2 years ago I even became a certified Spin (indoor cycling) instructor. I went to Spin class 4 days a week and loved it.
The past 18 months more troublng symptoms have started bothering me to the point I know it's not normal aging or aches and pain.
First my memory and focus started getting so bad I can't remember anything even with 3 calendars. My wrists started to ache 4-5 days a week and tylenol or ibuprofen won't help.
Then I'm dropping things more. My ex has always called me 'clumsy' in a joking way but he's right, I'm always having accidents or breaking things because I seem to just lose my grip when holding something or even standing. I can't balance on one foot to save my life.
Next my vision suddenly seemed off. I've always had 'eagle eyes'. Never wore glasses or contacts and I notice I can't see well when it's dark or dimmly lit. Have trouble driving at night and can't stand sunlight in my eyes. Even with sunglasses, can't see past it.
My ears started ringing non-stop for the past 6 months, I've had to go pee a lot more than ever before, I cannot tolerate heat. I live in Phoenix and the winter should be a break but when the heater is on at set at 69 degrees, I'm breaking out in fevers all night long. I haven't had the A/C off in my car for almost one year. Even when its 48 degrees out.
my hands now just don't work how I want but they are cramping and almost freezing in a contorted position. Writing and typing are hard (plus I can't type or write the letters my mind is telling my hands to do). Can't sew anymore. Too many needled stuck in my fingers.
My throat is swelling up. I swear I'm not making this up. It started with choking on dryer foods, then I could hear myself gasping for air in Spin class, and when I'm sitting on the couch doing nothing, I keep trying to swallow saliva and the process goes on for hours. Feels like there is something stuck in my throat.
If that isn't enough, now I'm homebound, on the sofabed most of the day, legs too heavy to get up, my back hurts like hell, I can't get enough air, choke on food, breathe it in and start wheezing, then my skin gets so dry, it's flaking off onto my clothing.
I've lived in the hot, dry desert for 30 years. I use a lot of moisturizer and I drink 80-100 ounces of water a day, everyday. I've never had skin so dry, my face looks horrible,like a lizard.
I was raised not to whine. Not because you should hide your feelings but my mom always said if you think positive, you'll be positive.
But enough is just enough. I'm worried and scared. I have very low quality of life but try to stay positive. I would just love to know what could all these annoying, non-subtle symptoms be??
I saw the doctor Friday about the swollen throat and while he was checking it, he asked 'how long have you had this tremor'?
Tremor?!? What? I've had shaky hands for 20 years. I don't drink coffee, no caffeine ever, and no more Aderral, why is my body shaking?
He said it's not your hands, your body has a tremor. Sure it's happened once a month where I'm shaken out of my sleep but not enough to mention it. He says, 'we need to look into this'.
For those who've read this far, God Bless you. I really don't want to sound negative or be a downer.
I just want to see if ANYONE has had similar symptoms and if so what was the cause.
What type of doctor should I see? The psychiatrist doesn't think I need to see him again so I think the depression theory is out of the question.
Thanks for your help!!
Originally I was given antidepressants and told 'stress' in my life was the culprit.
I'm sure I have a lot of stress but none of the 5 antidepressants made the symptoms ease or go away.
So it was off to a new doctor. My first and most annoying complaint was extreme fatique and brain fog. I used to joke with friends saying I had early alzheimers because I couldn't remember anything. The fatigue got to the point that I woke up at 5am, took 60mg of Aderral (prescribed for my fatigue), went back to sleep till 6am, made my son breakfast, took him to school, worked out at the gym with a trainer, came home and slept till 3pm when it was time to pick up my son. I would then help him with homework, fix some pre-made dinner, and be on the couch by 7pm. I had to fight to stay awake. Luckily I have a great ex-husband who would happily take my son when the fatigue got too bad.
That was 3 years ago. Now I had to move into my ex's house because I haven't been able to work for 4 years and can't care for my 12 year old on my own.
The Aderral never helped much, they even had me adding 30mg at 12 or 1pm but it didn't help so I stopped taking it. I was even given long acting versions of Aderral, Ritalin, and any other amphetamine you can name to no avail. I must have 19 bottles of full 'upper' type medications that never did more than put a bandaid on a bullet wound.
I kept telling my doctor 'if 80mg of Aderral doesn't give me energy, don't you think something else is wrong?'
They said we did blood tests and everything looks normal.
OK don't mean to focus on the fatigue but it's hard to explain since fatigue is different for everyone. Mine has gotten so bad that over the past year I'm able to get off the sofa bed, 3 times a week for about 4 hours.
I was the workout queen and loved being in the gym and active. I had been exercising 4-5 days a week for 25 years. Im 44 1/2 now.
2 years ago I even became a certified Spin (indoor cycling) instructor. I went to Spin class 4 days a week and loved it.
The past 18 months more troublng symptoms have started bothering me to the point I know it's not normal aging or aches and pain.
First my memory and focus started getting so bad I can't remember anything even with 3 calendars. My wrists started to ache 4-5 days a week and tylenol or ibuprofen won't help.
Then I'm dropping things more. My ex has always called me 'clumsy' in a joking way but he's right, I'm always having accidents or breaking things because I seem to just lose my grip when holding something or even standing. I can't balance on one foot to save my life.
Next my vision suddenly seemed off. I've always had 'eagle eyes'. Never wore glasses or contacts and I notice I can't see well when it's dark or dimmly lit. Have trouble driving at night and can't stand sunlight in my eyes. Even with sunglasses, can't see past it.
My ears started ringing non-stop for the past 6 months, I've had to go pee a lot more than ever before, I cannot tolerate heat. I live in Phoenix and the winter should be a break but when the heater is on at set at 69 degrees, I'm breaking out in fevers all night long. I haven't had the A/C off in my car for almost one year. Even when its 48 degrees out.
my hands now just don't work how I want but they are cramping and almost freezing in a contorted position. Writing and typing are hard (plus I can't type or write the letters my mind is telling my hands to do). Can't sew anymore. Too many needled stuck in my fingers.
My throat is swelling up. I swear I'm not making this up. It started with choking on dryer foods, then I could hear myself gasping for air in Spin class, and when I'm sitting on the couch doing nothing, I keep trying to swallow saliva and the process goes on for hours. Feels like there is something stuck in my throat.
If that isn't enough, now I'm homebound, on the sofabed most of the day, legs too heavy to get up, my back hurts like hell, I can't get enough air, choke on food, breathe it in and start wheezing, then my skin gets so dry, it's flaking off onto my clothing.
I've lived in the hot, dry desert for 30 years. I use a lot of moisturizer and I drink 80-100 ounces of water a day, everyday. I've never had skin so dry, my face looks horrible,like a lizard.
I was raised not to whine. Not because you should hide your feelings but my mom always said if you think positive, you'll be positive.
But enough is just enough. I'm worried and scared. I have very low quality of life but try to stay positive. I would just love to know what could all these annoying, non-subtle symptoms be??
I saw the doctor Friday about the swollen throat and while he was checking it, he asked 'how long have you had this tremor'?
Tremor?!? What? I've had shaky hands for 20 years. I don't drink coffee, no caffeine ever, and no more Aderral, why is my body shaking?
He said it's not your hands, your body has a tremor. Sure it's happened once a month where I'm shaken out of my sleep but not enough to mention it. He says, 'we need to look into this'.
For those who've read this far, God Bless you. I really don't want to sound negative or be a downer.
I just want to see if ANYONE has had similar symptoms and if so what was the cause.
What type of doctor should I see? The psychiatrist doesn't think I need to see him again so I think the depression theory is out of the question.
Thanks for your help!!
We can't diagnose you here but we do try to help when we can. There are many members here searching for a correct diagnosis of whatever-it-is that is making them feel so crappy.
I think you made a good start on your symptoms list and time line when you wrote this topic. You could copy it to your computer's document program and edit from there. One of our Health Pages (look for a link toward the top right of the page) will help you develop a helpful tool for whatever doctor you see.
I'm not sure how long it's been since you had a decent diagnostic workup or what kind of doctor you saw that commented on your tremor. That might be the best place to get started since he's already shown interest. It's entirely possible for a general practitioner to start this process and let the initial results dictate what specialists you need to see.
I agree with Bob though. Thyroid dysfunction could explain the more recent hair and skin problems. You may even be getting to an age that would make thyroid a likely target for SOME of your symptoms. But other things are possible too and it's quite possible to have more than one process going on at a time. A Rheumy doc may be of great help along the line too.
Unfortunately, success in finding out what's wrong and treating it may be a rather long and tiring process. It WILL be worth it. Believe in your knowledge of your own body and that what doesn't seem to make sense usually really does NOT make sense.
Symptoms that are so obvious to other people are a REAL problem. Women in their early forties are NOT old, certainly not old enough to feel or function like their eighty something grandmother on a daily basis. You need to know how and why your body is betraying you. You may have to fight to make that clear to some health care providers.
It's not our custom here to turn people away for incorrect posting protocol but you posted nothing to apologize for anyway. I would request though that next time you double space between your paragraphs. That will make it easier for members with vision problems to read your message.
As a safety note, please get all those drugs that have been ineffective for you out of your home. They are of no use to you, have high abuse potential, shouldn't be shared with anyone and are likely expired anyway. Expired doesn't mean they have no potency and you have a child (with an expanding group of friends who may visit your home) entering an age group known to be at increased risk for experimentation and behavior driven by peer pressure. I understand you used to work in drug rehab and have a wonderful child with no interest in such things. This is just a friendly reminder about things you already know. Sometimes people with the most knowledge forget to focus on the situation closest to them, especially when being distracted by the rigors of living with a chronic illness.
I hope you get some answers and solutions soon that help you return to being an active and healthy woman. Please let us know how it goes.
Mary
I think you made a good start on your symptoms list and time line when you wrote this topic. You could copy it to your computer's document program and edit from there. One of our Health Pages (look for a link toward the top right of the page) will help you develop a helpful tool for whatever doctor you see.
I'm not sure how long it's been since you had a decent diagnostic workup or what kind of doctor you saw that commented on your tremor. That might be the best place to get started since he's already shown interest. It's entirely possible for a general practitioner to start this process and let the initial results dictate what specialists you need to see.
I agree with Bob though. Thyroid dysfunction could explain the more recent hair and skin problems. You may even be getting to an age that would make thyroid a likely target for SOME of your symptoms. But other things are possible too and it's quite possible to have more than one process going on at a time. A Rheumy doc may be of great help along the line too.
Unfortunately, success in finding out what's wrong and treating it may be a rather long and tiring process. It WILL be worth it. Believe in your knowledge of your own body and that what doesn't seem to make sense usually really does NOT make sense.
Symptoms that are so obvious to other people are a REAL problem. Women in their early forties are NOT old, certainly not old enough to feel or function like their eighty something grandmother on a daily basis. You need to know how and why your body is betraying you. You may have to fight to make that clear to some health care providers.
It's not our custom here to turn people away for incorrect posting protocol but you posted nothing to apologize for anyway. I would request though that next time you double space between your paragraphs. That will make it easier for members with vision problems to read your message.
As a safety note, please get all those drugs that have been ineffective for you out of your home. They are of no use to you, have high abuse potential, shouldn't be shared with anyone and are likely expired anyway. Expired doesn't mean they have no potency and you have a child (with an expanding group of friends who may visit your home) entering an age group known to be at increased risk for experimentation and behavior driven by peer pressure. I understand you used to work in drug rehab and have a wonderful child with no interest in such things. This is just a friendly reminder about things you already know. Sometimes people with the most knowledge forget to focus on the situation closest to them, especially when being distracted by the rigors of living with a chronic illness.
I hope you get some answers and solutions soon that help you return to being an active and healthy woman. Please let us know how it goes.
Mary
Welcome to the forum. It doesn't sound like MS. Dry skin and thinning hair don't seem to fit MS. MS is a disease of the central nervous systems (brain and spinal cord.) Symmetrical symptoms of the arms, legs, hands and feet are possible in MS, but symmetrical symptoms of vision and hearing are pretty rare.
With systemic symptoms of the skin and hair, I'd initially think you might seek of the assistance of an endocrinologist. I know you said that they did lab tests, and I suspect that they have already ruled out thyroid issues. There are a few other things that they might want to rule out like adrenal issues. Endocrine issues can cause neurologic symptoms.
If the endocrinologist didn't find anything, my next stop would be a rheumatologist. Rheumatologists are pretty well equipped to deal with many of the other autoimmune diseases. Many of these diseases also have neurologic components. Specifically things like Systemic Lupus, scleroderma, Sjögren's syndrome, etc.
Bob
With systemic symptoms of the skin and hair, I'd initially think you might seek of the assistance of an endocrinologist. I know you said that they did lab tests, and I suspect that they have already ruled out thyroid issues. There are a few other things that they might want to rule out like adrenal issues. Endocrine issues can cause neurologic symptoms.
If the endocrinologist didn't find anything, my next stop would be a rheumatologist. Rheumatologists are pretty well equipped to deal with many of the other autoimmune diseases. Many of these diseases also have neurologic components. Specifically things like Systemic Lupus, scleroderma, Sjögren's syndrome, etc.
Bob
Oh yeah, of course just recalled another weird symptom. It's almost impossible to keep track of them and of course when I go to make a list i either forget what I was gonna do or forget to write all the symptoms down.
Past 15 months my hair has been falling out. Didn't think twice, I have thick hair.
But my hairdresser said (the past 3 times I saw her) 'I thought we were growing your sides in?' ' Did you thin them yourself'.
Ah NO, I didn't and please don't mention it again because I can't make it grow back.
Then went to get an eyebrow wax, or get loose hairs tidied up and the girl, who I've never seen before, says 'oh you need to stop waxing your brows are so thin I can't shape them'.
I haven't waxed my brows or tweezed them for over a year. What is going on??
If you think my post doesn't fit here, please let me know where a good place to start is. I'm absolutely stumped.
I used to work in drug rehab and have seen people who destroyed their bodies, got help, got well, and no bad side effects or illnesses. I'm VERY happy none of them have become ill because I love and respect the hell out of them for taking that step.
Ok gotta stop that thinking. That gets toxic real quick. I'm still hoping this is a bunch of weird things happening at once.
But I have to stop typing tonight. My hands are in that weird cramped position again today. Thanks again :)
Past 15 months my hair has been falling out. Didn't think twice, I have thick hair.
But my hairdresser said (the past 3 times I saw her) 'I thought we were growing your sides in?' ' Did you thin them yourself'.
Ah NO, I didn't and please don't mention it again because I can't make it grow back.
Then went to get an eyebrow wax, or get loose hairs tidied up and the girl, who I've never seen before, says 'oh you need to stop waxing your brows are so thin I can't shape them'.
I haven't waxed my brows or tweezed them for over a year. What is going on??
If you think my post doesn't fit here, please let me know where a good place to start is. I'm absolutely stumped.
I used to work in drug rehab and have seen people who destroyed their bodies, got help, got well, and no bad side effects or illnesses. I'm VERY happy none of them have become ill because I love and respect the hell out of them for taking that step.
Ok gotta stop that thinking. That gets toxic real quick. I'm still hoping this is a bunch of weird things happening at once.
But I have to stop typing tonight. My hands are in that weird cramped position again today. Thanks again :)
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