Aa
Have the symptoms but all test negative
Hello all,
I feel like I've been searching for years, which truly has only been a few months.
I am 34 yrs old, and I have not been diagnosed at this time, but my current Neurologist specializes more with seizures and headaches, and now my symptoms are starting to change more drastically. So she finally agrees it would be best to send me to someone that deals with MS,Fibromy. and etc... here were I'm located according to the NMSS there are no doctors that work with MS patients. I would like to get a second opinion or just an opinion and some meds to help the symptoms because at this time I have been off work for 3months with no diagnosis.
I have had MRI,MRA, EEG, EMG, Cerebral Angiogram, Spinal Tap, and every single test has come back negative. But my symptoms continue on, they all started last summer 2007 I noticed I was having more frequency of headaches, and then was unable to control my bladder more. And I began having to wear a poise pad to help out with the accidents, but I just dismissed, and kept it to myself. Then by fall, I was experiencing numbness in my hands and legs, but with me being diabetic, I just figured it was the beginning of Diabetic Neuropathy. By Dec. of 2007 I talk with my Primary Care and Endo. and explained my concerns, but now I was having really bad mood changes that started to affect my family life, going through periods of isolating myself from others and just spending time alone crying for no reason. My doctors both start the process of getting some testing done, just lab work.
On Jan. 28, this year I experienced a severe headache with chest pain, where felt as if something was just sitting on my chest, along with complete numbness on my left side in both my arm and leg, and was hospitalized…they thought I was having a stroke, but my heart and brain all was fine, I don’t have high blood pressure or high Cholesterol. I took a stress test, Cat scan of my heart and brain everything was normal. I was hospitalized for 3 days due to these symptoms. Went to Neuro. she that figured I had a sensory stroke, from my neuro test i flunked there in the office, and all the signs sensory trouble (left side weakness, vertigo, balance way bad, trouble swallowing... things I hadn't even noticed) since most of them was affected and still are in way or another... were does the itching come from, and benadryl doesn't work, I just scratch like something is on me.
Since, that time I have been experiencing episodes or seizures were my teeth chatter and just maybe one arm will shake. I also have quadriplegia paralysis episodes at first those were just effecting the left side of my body both arm and leg but now it effects both arms and legs, to a crippling point were I can’t walk or move at all. These episodes last anywhere from a few minutes to almost an hour, along with seperate episodes of facial numbness (maybe my both side of my face or just the left side with extreme eye pain) where at times I’m unable to speak. I currently use a walker or a cane to get a around, and some days, I don’t need either, but since we don’t know or are unable to tell when an episode is coming we always keep something with me at all times.
Needless to say that since Jan. i've been back in the hospital 3 different times, but 1 thing we have noticed that whenever i have an episode I'm unable to hold my head up like i loose control of my head. And taking even a warm shower causes me to pass out into a crippling state. Since i did have an episode while at my Primary Care Dr. office we did notice that my heart rate shots sky high very fast, and my blood pressure elevates also, but being diabetic there is no problem with my blood sugar level, just in case your wondering I'm on a insulin pump so diabetes is under control.
Looking forwarding to getting back to normal quickly, being at home is killing me... and I can't drive either. c'mon
Vessel
I feel like I've been searching for years, which truly has only been a few months.
I am 34 yrs old, and I have not been diagnosed at this time, but my current Neurologist specializes more with seizures and headaches, and now my symptoms are starting to change more drastically. So she finally agrees it would be best to send me to someone that deals with MS,Fibromy. and etc... here were I'm located according to the NMSS there are no doctors that work with MS patients. I would like to get a second opinion or just an opinion and some meds to help the symptoms because at this time I have been off work for 3months with no diagnosis.
I have had MRI,MRA, EEG, EMG, Cerebral Angiogram, Spinal Tap, and every single test has come back negative. But my symptoms continue on, they all started last summer 2007 I noticed I was having more frequency of headaches, and then was unable to control my bladder more. And I began having to wear a poise pad to help out with the accidents, but I just dismissed, and kept it to myself. Then by fall, I was experiencing numbness in my hands and legs, but with me being diabetic, I just figured it was the beginning of Diabetic Neuropathy. By Dec. of 2007 I talk with my Primary Care and Endo. and explained my concerns, but now I was having really bad mood changes that started to affect my family life, going through periods of isolating myself from others and just spending time alone crying for no reason. My doctors both start the process of getting some testing done, just lab work.
On Jan. 28, this year I experienced a severe headache with chest pain, where felt as if something was just sitting on my chest, along with complete numbness on my left side in both my arm and leg, and was hospitalized…they thought I was having a stroke, but my heart and brain all was fine, I don’t have high blood pressure or high Cholesterol. I took a stress test, Cat scan of my heart and brain everything was normal. I was hospitalized for 3 days due to these symptoms. Went to Neuro. she that figured I had a sensory stroke, from my neuro test i flunked there in the office, and all the signs sensory trouble (left side weakness, vertigo, balance way bad, trouble swallowing... things I hadn't even noticed) since most of them was affected and still are in way or another... were does the itching come from, and benadryl doesn't work, I just scratch like something is on me.
Since, that time I have been experiencing episodes or seizures were my teeth chatter and just maybe one arm will shake. I also have quadriplegia paralysis episodes at first those were just effecting the left side of my body both arm and leg but now it effects both arms and legs, to a crippling point were I can’t walk or move at all. These episodes last anywhere from a few minutes to almost an hour, along with seperate episodes of facial numbness (maybe my both side of my face or just the left side with extreme eye pain) where at times I’m unable to speak. I currently use a walker or a cane to get a around, and some days, I don’t need either, but since we don’t know or are unable to tell when an episode is coming we always keep something with me at all times.
Needless to say that since Jan. i've been back in the hospital 3 different times, but 1 thing we have noticed that whenever i have an episode I'm unable to hold my head up like i loose control of my head. And taking even a warm shower causes me to pass out into a crippling state. Since i did have an episode while at my Primary Care Dr. office we did notice that my heart rate shots sky high very fast, and my blood pressure elevates also, but being diabetic there is no problem with my blood sugar level, just in case your wondering I'm on a insulin pump so diabetes is under control.
Looking forwarding to getting back to normal quickly, being at home is killing me... and I can't drive either. c'mon
Vessel
Oh my goodness--you've really are having a hard time of things! I am so, so sorry this is happening to you! I have just been diagnosed with MS in late Jan. or early Feb. this year, but all of my symptoms have been appearing over a several year time period . . . your symptoms hit hard and fast. I agree with Humming4u, you must be a strong person for enduring all of this!
I don't know what's ailing you, but I don't think that fibromyaligia is causing all these problems--what you're experiencing, especially with the neck weakness doesn't sound like fibro at all. Like you, I have headaches (mine are migraines), but I don't think that this a typical symptom of MS (in fact I don't think it's unrelated). The weakness, vertigo, swallowing problems, numbness are symptoms of this. There are many, many diseases that cause neurological problems and just as many mimics of MS.
My hope is that your doctor finds what is wrong, quickly. Are your doctors doing a lot of blood work? There are many autoimmune disease that will cause neurological problems. I'm thinking they probably have, but thought I'd throw that out there (I had 14 vials of blood drawn from me). The Lyme test was probably done with your spinal test, I would imagine. What about an evoked potential test?
My first MRI was negative. It was done on an open machine that was not very strong. Plus I didn't have contrast. My second MRI showed lesions, I think because it was done on a stronger closed machine (I also had contrast).
If it's MS, what I understand is that the LP may be negative in the early stages. My dear, I have no idea if this is the problem--I wish I had the expertise to put the puzzle pieces together for you!!!!!
I have blood pressure issues, too (not related to MS, I don't think). It's worse when I'm in pain.
The eye pain is disconcerting. I think it would be prudent to see an opthamologist--especially in light of the fact that your symptoms have hit like a ton a bricks like this.
Please keep us posted as to what happens. I'll be praying for you!
Deb
I don't know what's ailing you, but I don't think that fibromyaligia is causing all these problems--what you're experiencing, especially with the neck weakness doesn't sound like fibro at all. Like you, I have headaches (mine are migraines), but I don't think that this a typical symptom of MS (in fact I don't think it's unrelated). The weakness, vertigo, swallowing problems, numbness are symptoms of this. There are many, many diseases that cause neurological problems and just as many mimics of MS.
My hope is that your doctor finds what is wrong, quickly. Are your doctors doing a lot of blood work? There are many autoimmune disease that will cause neurological problems. I'm thinking they probably have, but thought I'd throw that out there (I had 14 vials of blood drawn from me). The Lyme test was probably done with your spinal test, I would imagine. What about an evoked potential test?
My first MRI was negative. It was done on an open machine that was not very strong. Plus I didn't have contrast. My second MRI showed lesions, I think because it was done on a stronger closed machine (I also had contrast).
If it's MS, what I understand is that the LP may be negative in the early stages. My dear, I have no idea if this is the problem--I wish I had the expertise to put the puzzle pieces together for you!!!!!
I have blood pressure issues, too (not related to MS, I don't think). It's worse when I'm in pain.
The eye pain is disconcerting. I think it would be prudent to see an opthamologist--especially in light of the fact that your symptoms have hit like a ton a bricks like this.
Please keep us posted as to what happens. I'll be praying for you!
Deb
wow,girl so much,and so many.you must be very,very strong,no not must,you are!
i just knew of a wife of a freind of my husbands who had so many thigns as you do, they dxed her with lou garetts disease(als?) they were crushed.now i'm not sure how it all came about but they got a doctor to treat her as if she did have lyme,even when testing said no, and guess what,she is starting to feel lots better,so,lyme can be very aggresive and reck havoic on a body, so you go fight girl for someone to help you, and help you lots
I will be praying for you,and look forward to hearing from you again.when were suffering its normal to want to hide away, done a bit of it myself, just don't stay to long, and don't feel to bad for the need to.I know things just have to get better for you, because it seems as if you've been in the worst!i will be thinking of you too
i just knew of a wife of a freind of my husbands who had so many thigns as you do, they dxed her with lou garetts disease(als?) they were crushed.now i'm not sure how it all came about but they got a doctor to treat her as if she did have lyme,even when testing said no, and guess what,she is starting to feel lots better,so,lyme can be very aggresive and reck havoic on a body, so you go fight girl for someone to help you, and help you lots
I will be praying for you,and look forward to hearing from you again.when were suffering its normal to want to hide away, done a bit of it myself, just don't stay to long, and don't feel to bad for the need to.I know things just have to get better for you, because it seems as if you've been in the worst!i will be thinking of you too
I agree with willow woman. Your symptoms sound alot like Lyme Disease. Please ask your doctor to check this out! I am so sorry your so sick. It is so scary when you dont know whats wrong. Good luck sweety! We'll be praying for you!
cz
cz
Hi, my name is Beth and I have been home since Jan also. They also dont let me drive because of my vertigo. Long story short...........7 migraines in 8 weeks. Then 2 weeks ago, my left leg just quit working for two days. Could not walk wtih out assist. My brain MRI came out normal. Waiting for results from spinal MRI. My symptoms actually started in 2001. This is the third time since 2001 that a dr. has mentioned MS to me. Only this time I have good insurance to go thru all the testing. Last night I had a sleep apena test done. My pain is horrible in my neck to the point it swells. Then pain travels to behind my ear and here comes the headache. I also have many other symptoms like the eye pain on left side, the muscle spasams, and on and on...............My dr finally called in pain meds for me yesterday. I just took it for the first time this morning. Feeling a nap in my near future..........LOL
Hang in there.........Like I told my husband this morning..........God doesn't make mistakes and He is working toward getting us better. I'll be praying
Hugs,
Beth
Hang in there.........Like I told my husband this morning..........God doesn't make mistakes and He is working toward getting us better. I'll be praying
Hugs,
Beth
Willowoman7,
I think that part of my symptoms that is throwing you off is the headache which i don't have that was then, could have been that i work on a computer all day long don't know, but right now headaches are not part of my symptoms. When I say that I can't hold my head up, when I have an episode especially when my arms and legs cripple up, I loose muscle control basically all over except for maybe my right arm.. my head usually drops into my chest, until I come back to myself an regain control. I can have the episodes of facial numbness 3-5 times per day.. It never just happens once. and then I may be ok for almost a week or so doing fine, maybe just using my cane, still having problems walking, top of thighs burning or tingling, and feet maybe numb, just eveyday is different so me and my husband try to keep a journal... i did look at the website you sent and also webmd for lyme disease. (that doesn't apply -- around here you would know if a tick bit you, and I have nothing similar to bell palsey, my face doesn't droop on either side just goes numb, with burning or tingling)... The headache I believe could be from my eye pain because the pain is on the side by my eye socket and just penetrate down from their...
I plan to keep searching until i find something, and hopefully a new neurologist can help also.
Thanks
Vessel
I think that part of my symptoms that is throwing you off is the headache which i don't have that was then, could have been that i work on a computer all day long don't know, but right now headaches are not part of my symptoms. When I say that I can't hold my head up, when I have an episode especially when my arms and legs cripple up, I loose muscle control basically all over except for maybe my right arm.. my head usually drops into my chest, until I come back to myself an regain control. I can have the episodes of facial numbness 3-5 times per day.. It never just happens once. and then I may be ok for almost a week or so doing fine, maybe just using my cane, still having problems walking, top of thighs burning or tingling, and feet maybe numb, just eveyday is different so me and my husband try to keep a journal... i did look at the website you sent and also webmd for lyme disease. (that doesn't apply -- around here you would know if a tick bit you, and I have nothing similar to bell palsey, my face doesn't droop on either side just goes numb, with burning or tingling)... The headache I believe could be from my eye pain because the pain is on the side by my eye socket and just penetrate down from their...
I plan to keep searching until i find something, and hopefully a new neurologist can help also.
Thanks
Vessel
http://www.medicinenet.com/lyme_disease/page2.htm
this link shows the syjmptoms of lymes - found it for a friend
this link shows the syjmptoms of lymes - found it for a friend
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