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could it be ms?
by college402, Jan 21, 2009 07:21PM
for the past two years i have been seeing doctors for extreme pain, fatigue and weakness
Just recently they suggested it might be lupus, but they werent positive and my tests in the past didnt prove the diagnosis, yet the suggested i take a medicine that is given to lupus patients to reduce fatigue and pain in my limbs.
but i have been doing my research, and things aren't adding up and even the doctors are confused, because i show the signs pof lupus, but not allof them, and tests arent being conclusive. and i work as a pca for a woman with ms, though i havent disclosed my suspicions to her i am starting to suspect MS.
as some backround info
im 20
female
i was diagnosed with lyme disesase when i was 7 (test prove this isnt reoccurred right now) i dont know if there are any connections
my symptoms from my past
-never dealt with heat well, always get very tired, dizzy and my legs and arms will hurt and I sometimes become physically ill
-i get a rash on my face arms and chest and i feel overall "overheated", sometimes having to step out side to cool off
-2 years ago i had a severe episode of pain im my legs and arms and i couldnt even gain the strenght to move around
-i was sent to a rhumetologist, but they found nothing
- bladder control problems
currently i still have these same symptoms, as well as
-chest pain that ranges from severe to, a dull feeling of constant pressure, occasionally i feel a shock that goes down my left side
- occasional painful shock that travels down my body to my foot,
-
- ALWAYS lightheaded when i get up, my eyes will almost black over when i am in the shower accompanied with lightheaded feeling, that sometimes when i stand up
- bladder control problems that they toldmy parents I would grow out of but the worst of it (bed wetting) still continues to this day, but i have been able to control it
- but the urgency to urinate will come on suddenly and unless i make it to a bathroom almos immediatly can result in loss of some if not all bladder control
-pain in my knees and arms, legs are occasionally painful to touch, and very weak,
- still not tolerance for heat, i get so overheated i have to throw cold water on my face or step outside. this happens when i am working out inside, doing something that requires physical activity like getting up and down while cleaning, blow drying or straightening my hair, and after i take a shower
feeling overheated is usually associated with the rash on my face chest and arms. but unlike with lupus it doesnt last very long and usually goes away when i cool down
- pain in my hips, more pain in the left hip, feels like they are displaced or popped out and just general pain, most obvious with walking.
- in my mid back I have had pain that has gotten so bad i have gone to the ER, in my case i went to the er twice and both trips were a month apart. they ruled out kidney stones, and they dont believe its the actual muscle considering it doesn't hurt to touch
- all my symptoms get worse with stress
- seeing a psychologist for depression, just haven't felt myself and thought it would be a good idea
-I have muscle spasms in the back of my thigh/buttocks alot
- weird vision issues, i feel like my eyes are slow to move, or just one eye is delayed when i shift my eyes to look at something and a few times i have felt that there was something like a piece of glass in my eye and flushing it out and rubbing it would not help
-the part of my eyelid where my eyelashes are, becomes painful and almost feels inflamed. butmy eyes dotn become dry
- i cant feel the cold so well, i can go out in cold weather poorly dressed and not be phased as much as friends, and i was also told I have raynauds. but my tolerance for cold is very high sometimes and others not somuch (im not sure if there is a connection of raynauds and MS)
-i was diagnosed with ADD as a child, but i have been increasingly bothered by being unable to pay attention to anything, and losing my train of thought in speech, and the unability to try and find the right word in a sentance, but not always "hard" words just simple everyday words one would use
- i am a huge clutz, i run into walls walk into everything, even though i am completely aware of it being there!
- increasingly forgetful,of everything, not something new for me, but it has gotten worse,my parents and friends get so frustrated because i am older and should have grown out of it
- as i researched more, the more i foud, obviously not as good as seeing a doctor,
the weirdest thing i found was something i have noticed only the past two years.
when I am jogging, and occasionally just walking, i can feel my right ankle almost give out. i cant lift it and unless I stop walking i will drag it or trip completely
I thought it was odd but never really thought about telling a doctor about it just always associated to me being a huge klutz, but when i read about the MS "foot drop" and my symptoms seemed eerily similar i got suspicious. more and more i have noticed that, as well as just tripping over my feet because i don't lift my foot enough and i drag my toe causing me to have to catch myself from falling. and i have only noticed it with my right ankle.
i know, its a ton of info, but im hoping someone may see something or have a similiar case and might be able to give me a suggestion
should i just stick with the diagnosis of possibly having lupus? i just dont know how i feel with going up to a doctor and saying "well what about MS?"
any help or suggestions would be so very helpful :)
Just recently they suggested it might be lupus, but they werent positive and my tests in the past didnt prove the diagnosis, yet the suggested i take a medicine that is given to lupus patients to reduce fatigue and pain in my limbs.
but i have been doing my research, and things aren't adding up and even the doctors are confused, because i show the signs pof lupus, but not allof them, and tests arent being conclusive. and i work as a pca for a woman with ms, though i havent disclosed my suspicions to her i am starting to suspect MS.
as some backround info
im 20
female
i was diagnosed with lyme disesase when i was 7 (test prove this isnt reoccurred right now) i dont know if there are any connections
my symptoms from my past
-never dealt with heat well, always get very tired, dizzy and my legs and arms will hurt and I sometimes become physically ill
-i get a rash on my face arms and chest and i feel overall "overheated", sometimes having to step out side to cool off
-2 years ago i had a severe episode of pain im my legs and arms and i couldnt even gain the strenght to move around
-i was sent to a rhumetologist, but they found nothing
- bladder control problems
currently i still have these same symptoms, as well as
-chest pain that ranges from severe to, a dull feeling of constant pressure, occasionally i feel a shock that goes down my left side
- occasional painful shock that travels down my body to my foot,
-
- ALWAYS lightheaded when i get up, my eyes will almost black over when i am in the shower accompanied with lightheaded feeling, that sometimes when i stand up
- bladder control problems that they toldmy parents I would grow out of but the worst of it (bed wetting) still continues to this day, but i have been able to control it
- but the urgency to urinate will come on suddenly and unless i make it to a bathroom almos immediatly can result in loss of some if not all bladder control
-pain in my knees and arms, legs are occasionally painful to touch, and very weak,
- still not tolerance for heat, i get so overheated i have to throw cold water on my face or step outside. this happens when i am working out inside, doing something that requires physical activity like getting up and down while cleaning, blow drying or straightening my hair, and after i take a shower
feeling overheated is usually associated with the rash on my face chest and arms. but unlike with lupus it doesnt last very long and usually goes away when i cool down
- pain in my hips, more pain in the left hip, feels like they are displaced or popped out and just general pain, most obvious with walking.
- in my mid back I have had pain that has gotten so bad i have gone to the ER, in my case i went to the er twice and both trips were a month apart. they ruled out kidney stones, and they dont believe its the actual muscle considering it doesn't hurt to touch
- all my symptoms get worse with stress
- seeing a psychologist for depression, just haven't felt myself and thought it would be a good idea
-I have muscle spasms in the back of my thigh/buttocks alot
- weird vision issues, i feel like my eyes are slow to move, or just one eye is delayed when i shift my eyes to look at something and a few times i have felt that there was something like a piece of glass in my eye and flushing it out and rubbing it would not help
-the part of my eyelid where my eyelashes are, becomes painful and almost feels inflamed. butmy eyes dotn become dry
- i cant feel the cold so well, i can go out in cold weather poorly dressed and not be phased as much as friends, and i was also told I have raynauds. but my tolerance for cold is very high sometimes and others not somuch (im not sure if there is a connection of raynauds and MS)
-i was diagnosed with ADD as a child, but i have been increasingly bothered by being unable to pay attention to anything, and losing my train of thought in speech, and the unability to try and find the right word in a sentance, but not always "hard" words just simple everyday words one would use
- i am a huge clutz, i run into walls walk into everything, even though i am completely aware of it being there!
- increasingly forgetful,of everything, not something new for me, but it has gotten worse,my parents and friends get so frustrated because i am older and should have grown out of it
- as i researched more, the more i foud, obviously not as good as seeing a doctor,
the weirdest thing i found was something i have noticed only the past two years.
when I am jogging, and occasionally just walking, i can feel my right ankle almost give out. i cant lift it and unless I stop walking i will drag it or trip completely
I thought it was odd but never really thought about telling a doctor about it just always associated to me being a huge klutz, but when i read about the MS "foot drop" and my symptoms seemed eerily similar i got suspicious. more and more i have noticed that, as well as just tripping over my feet because i don't lift my foot enough and i drag my toe causing me to have to catch myself from falling. and i have only noticed it with my right ankle.
i know, its a ton of info, but im hoping someone may see something or have a similiar case and might be able to give me a suggestion
should i just stick with the diagnosis of possibly having lupus? i just dont know how i feel with going up to a doctor and saying "well what about MS?"
any help or suggestions would be so very helpful :)
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is
First of all, we're not doctors so I'm just speaking from personal experience. You list of symptoms do sound a lot like MS, but they can also sound a lot like other problems such as Lyme Disease and Lupus. Both of these are known to mimic the symptoms of MS.
Have you been seen by a doctor for these symptoms? I couldn't quite tell from what you wrote if you have been seen recently. Whatever you do, DON'T tell the doctor you have been researching MS on line, that tends to scare them away from even considering it was a possibility.
Have you had any MRI's done with your testing? Besides an MRI, your doctor should also be doing a whole battery of blood tests looking for problems.
Since you are a PCA for an MS patient, you probably already know more than the average 20 year old about MS. But keep reading here- you will learn even more and knowledge is very powerful. I hope you will come through here often and keep us posted on your progress.
My best, Lulu
thank so much for the response,
and yes i completely understand you arent doctors, but im starting to think my parents believe i am making these somewhat random symptoms up, and my doctors cant seem to make any clear cut connections. but at the same time im worried to tell them all these things because i dont know what they will say or if they will believe me.
so i was hoping this could help
I have been seen by a doctor, and they are treating me for lupus but as they said, we cant say it is and we cant say it isnt, mostly because i dont have the most obvious symptom's and they arent as consistent as they are in lupus
also my past blood tests have not given them reason to say I have Lupus (specifically the ANA test)
I have also never had a MRI, yet they are doing the blood tests like ANA test and such again. are there any blood tests that help in diagnosis?
thanks again
and yes i do know a bit more than most 20 year olds, and funny you say knowledge is power, because she has toldme that everyday since i told her about being sick!
and i will be sure to look around more, and check back daily, or until i figure this out!
The ANA results might help clarify this. I wonder why no MRIs at all. Your rash is reminiscent of lupus, rather than MS, as are the chest pains. Your joint pain (hip) also suggests some kind of rheumatic origin. The allodynia? Curious.
You are far too young to be having the bladder symptoms you describe. Why hasn't someone referred you to a urologist for these?
Bio
I would also agree the rash is connected to Lupus, but the doctors are not convinced it is the typical malar rash associated w/ lupus based on the facts that my rash is not raised, and does not last long, and it always when i get overheated or i feel that i am getting overheated.
and i have also been tested for juvenille RA and more recently adult RA and they have ruled them out.
what is Allodynia i am not very familiar with it?
and the urinary problems have never been addressed because as a child it was seen as a common childhood thing, as i got older i felt embarrassed i couldnt grow out of it or control myself. though i cant remember the last time overnight bed wetting occured , i am still unable to control the urgency ever.
thanks for your help :)
Bio
I suggest you keep a journal with dates, symptoms, and durations of symptoms etc. Also doctor's visits and what tests were done, those records, and the thoughts of the doctors. Symptoms add up over time and give the clinician a chance to see the big picture. These dx are often very difficult to make. I always joke - I wish I had Dr. House! lol
Blessings to you. I hope you have many wonderful things you can focus on. Nothing helps the immune system and health than purpose, peace, and loved ones. I've seen that the people here care and have a wealth of experience and info. Hang in there! Jan
Everyone has given you great answers and input, but I wanted to also welcome you to the forum. I think you will find the people here very supportive and knowledgable.
Have you asked why there have been no MRIs? At least it might help to eliminate the possibilities of MS.
I wish you the best and hope you will come here often, and share your journey with us. We will always listen and help as best we can.
Take care,
doni