Aa
7 yrs of undiagnosed attacks - eye twitch, numbness, dizziness, vertigo, balance
I'm 35 years old. In 1995 I was found to have jaundice in my blood & blood in my urine that was undiagnosed by a kidney specialist & eventually went away. In 2/2000 I started having attacks of visual auras, numbness in arms, legs, feet, hands, head and face, vertigo, dizziness, loss of balance, feeling of being drunk or dreamy and severe fatigue. I also get sensations of ice water falling on my head or on my legs. All the MRI's, MRA's, spinal taps, and blood work over the last 7 years comes back normal. A year ago I developed a stiffness and twitch in the muscles around my left eye and a few months ago I had a few episodes of iritis which is an autoimmune disorder. The prednisone helped the iritis, stiffness & twitch but the stiffness & twitch returned after the medication was stopped. In 2004 I was diagnosed with Basilar Artery Migraine but I have no headache with the attacks and I'm not satisfied with the diagnosis. I've most recently been tested for hughes syndrome since it's genetic and my sister was diagnosed with it but the test results were normal. While driving or shopping I just start spinning. The symptoms come together in a package, mostly around my period. I have diarrhea frequently, esp. around menstruation. I'm not overweight but in the last few months I've lost 30 lbs without trying. If anyone has any advice, information or insight as to what could be causing my symptoms, I could use it! Thank you!
Classic HAE symptoms(Hereditary angioedema.) Go get your blood worked-up to see if your C1 inhibitors are deficient. I did and got a diagnosis after 20 grueling years. Aloha, Jeff
Hi Kim,
I totally understand what you are going through. All of a sudden one day at school I just could not take a deep breath. My right foot went numb, both of my legs were motionless, my arms felt so heavy it was hard to move them. Then I started having muscle spasms in my upper right arm and right calf. I also had a headache only in certain spots of my head. I have been to my allergist (thinking I ate something I shouldn't have, my family doctor and the ER. I then went to a neurologist and took blood work and a MRI of my head and neck. Everything came out negative. This was all right before Christmas and I have not had another episode until 2 nights ago (Feb. 2). I am at wits end and do not know what to do . What other Dr. can I go to? I made another appointment with my Neurologist, but I bet he is just going to refer me to the Mayo clinic. This is so frustrating.
Has anyone else out there experienced such symptoms? I could use all of the help and advice I can get.
Thanks,
Lyn
I totally understand what you are going through. All of a sudden one day at school I just could not take a deep breath. My right foot went numb, both of my legs were motionless, my arms felt so heavy it was hard to move them. Then I started having muscle spasms in my upper right arm and right calf. I also had a headache only in certain spots of my head. I have been to my allergist (thinking I ate something I shouldn't have, my family doctor and the ER. I then went to a neurologist and took blood work and a MRI of my head and neck. Everything came out negative. This was all right before Christmas and I have not had another episode until 2 nights ago (Feb. 2). I am at wits end and do not know what to do . What other Dr. can I go to? I made another appointment with my Neurologist, but I bet he is just going to refer me to the Mayo clinic. This is so frustrating.
Has anyone else out there experienced such symptoms? I could use all of the help and advice I can get.
Thanks,
Lyn
Hi Kim,
How are you feeling?
I checked out the link you mentioned, its a great site, and I plan on getting tested for that now. The Marshall Protocol should address it if I really do have Hugh's syndrome, but... I would love to know if I did or didn't have something. Just to know....
I had checked out Hughes syndrome before (on-line), in my many searches for help, but I don't think I was ever tested, it just got pushed aside with all the rest of my suspicions. Any ways, thank you!!! Good site, with new info I didn't see before! I'm sorry it wasn't the answer for you, I know the let down of being told you DON'T have something. I'll let you know how the MP is going, so far so good,
Let me know how you're doing too, K!
Leslie :)
How are you feeling?
I checked out the link you mentioned, its a great site, and I plan on getting tested for that now. The Marshall Protocol should address it if I really do have Hugh's syndrome, but... I would love to know if I did or didn't have something. Just to know....
I had checked out Hughes syndrome before (on-line), in my many searches for help, but I don't think I was ever tested, it just got pushed aside with all the rest of my suspicions. Any ways, thank you!!! Good site, with new info I didn't see before! I'm sorry it wasn't the answer for you, I know the let down of being told you DON'T have something. I'll let you know how the MP is going, so far so good,
Let me know how you're doing too, K!
Leslie :)
Thank you. I don't think I need to be a recipient of the one dollar charity at this time but I think it's wonderful. thanks so much! I'd love to give. Fortunately I have an HMO - Kaiser and my tests have been covered.
I checked out the Marshall protocol site and it was very confusing. I did search for info on the net and it looks like there are some real serious risks involved, so I think I better avoid trying it.
I found that my symptoms were significantly reduced when I cut aspartame, a.k.a. nutrasweet, from my diet. I also found a lot of relief taking 10mg prozac daily and a baby aspirin.
More clues...When I had problems with my liver/kidney around 1995, they found internal edema (pancreas pushing up on lungs and enlarged liver).
For the last 6 months or so I have episodes of horrible skin pain on a random areas of my hips or thighs. The skin appears completely normal and there's no swelling but it feels like my skin and the tissue below it is burned. I had it last night above my right knee.
I have a slight droopy eyelid on the eye that's not stiff and twitching. I have diarrhea a lot. I just had a barium enema and it was normal.
I'm not sure what all the tests I've had are, there have been so, so many! I've had tests for autoimmune disorders like ANA, Syphilis, Lupus, Lyme, MRIs, spinal taps, etc. etc. I feel like a lab rat.
I think I'm going to start keeping a diary of all my symptoms. But really, come on, do you think a doctor is going to want to sit and read every weird sensation, dizzy spell or numbness episode I've had? They blow me off. My file is huge. It's getting embarrasing to go in.
You know how many times I've wanted to give up? How many times I thought maybe I'm crazy and it's all in my head? People say stress could do all this. Doesn't seem possible.
They should have a reality show where they showcase patients with undiagnosed illnesses. They could hire a team of experts to get to a diagnosis. Look at how many people are out in the world with illnesses docs can't figure out! I'm very frustrated.
I think I would like to see an endocrinologist (however it's spelled) but I don't know how to convince my dr.
Aspartame is a neurotoxin. I'm convinced of it. My symptoms were 70% better when I cut it out of my diet. I avoid anything (meds, gum, drinks, breath mints, toothpaste, and food) if it has Phenylalanine. Check out Dorway.com for more info. I used to drink 3 or 4 diet cokes a day and have about 6-8 packets of equal a day. I'd eat lowfat yogurt, and low cal foods. I didn't realize I was poisoning myself. One stick of juicy fruit (yes, it has aspartame and sugar) causes me to trip over my feet. Now I'm certain I did permanent damage or there is something else I'm consuming that's causing me to feel this way that's still part of my diet.
I'm allergic to jewelry that's not pure gold or silver. I get horrible rashes. I thought maybe all my problems were a result of my numerous mercury amalgam fillings I've had since I was a small child. I was going to get them all removed but my doctor doesn't believe it's the problem. If I had mercury poisoning, my hair would be falling out. She doesn't believe that cholation therapy is safe.
I'll just keep looking for answers like all the rest of you!
Thanks so much,
Kim
I checked out the Marshall protocol site and it was very confusing. I did search for info on the net and it looks like there are some real serious risks involved, so I think I better avoid trying it.
I found that my symptoms were significantly reduced when I cut aspartame, a.k.a. nutrasweet, from my diet. I also found a lot of relief taking 10mg prozac daily and a baby aspirin.
More clues...When I had problems with my liver/kidney around 1995, they found internal edema (pancreas pushing up on lungs and enlarged liver).
For the last 6 months or so I have episodes of horrible skin pain on a random areas of my hips or thighs. The skin appears completely normal and there's no swelling but it feels like my skin and the tissue below it is burned. I had it last night above my right knee.
I have a slight droopy eyelid on the eye that's not stiff and twitching. I have diarrhea a lot. I just had a barium enema and it was normal.
I'm not sure what all the tests I've had are, there have been so, so many! I've had tests for autoimmune disorders like ANA, Syphilis, Lupus, Lyme, MRIs, spinal taps, etc. etc. I feel like a lab rat.
I think I'm going to start keeping a diary of all my symptoms. But really, come on, do you think a doctor is going to want to sit and read every weird sensation, dizzy spell or numbness episode I've had? They blow me off. My file is huge. It's getting embarrasing to go in.
You know how many times I've wanted to give up? How many times I thought maybe I'm crazy and it's all in my head? People say stress could do all this. Doesn't seem possible.
They should have a reality show where they showcase patients with undiagnosed illnesses. They could hire a team of experts to get to a diagnosis. Look at how many people are out in the world with illnesses docs can't figure out! I'm very frustrated.
I think I would like to see an endocrinologist (however it's spelled) but I don't know how to convince my dr.
Aspartame is a neurotoxin. I'm convinced of it. My symptoms were 70% better when I cut it out of my diet. I avoid anything (meds, gum, drinks, breath mints, toothpaste, and food) if it has Phenylalanine. Check out Dorway.com for more info. I used to drink 3 or 4 diet cokes a day and have about 6-8 packets of equal a day. I'd eat lowfat yogurt, and low cal foods. I didn't realize I was poisoning myself. One stick of juicy fruit (yes, it has aspartame and sugar) causes me to trip over my feet. Now I'm certain I did permanent damage or there is something else I'm consuming that's causing me to feel this way that's still part of my diet.
I'm allergic to jewelry that's not pure gold or silver. I get horrible rashes. I thought maybe all my problems were a result of my numerous mercury amalgam fillings I've had since I was a small child. I was going to get them all removed but my doctor doesn't believe it's the problem. If I had mercury poisoning, my hair would be falling out. She doesn't believe that cholation therapy is safe.
I'll just keep looking for answers like all the rest of you!
Thanks so much,
Kim
I forgot to mention these other symptoms:
dry flaky skin on my fore-fingers with pigment loss
facial melasma (i'm not pregnant or on birth control)
hyperpigmentation on scars
Severe episodes of fatigue that hit suddenly (most days I'm full of energy but when it hits I'm so fatigued it's hard to walk or breathe)
Toe/foot cramps every day(ouch!)
During my attacks I have neck stiffness, fatigue, balance issues, auras, pressure in face and head, anxiety, numbness, vertigo, nausea, loss of sensation when urinating, uneven pupil dilation, sensations of ice water falling on me, and ear pressure. I have NO headache. Migraines usually have symptoms like this that last for hours before the headache. Mine last for several days at a time.
I find I feel much better when I meditate and stretch each night. I feel really terrible when I get hot or when I exercise (I get dizzy and numb). Hot showers sometimes bring on an attack but I've been tested for MS and my tests were clear.
Thanks again!
dry flaky skin on my fore-fingers with pigment loss
facial melasma (i'm not pregnant or on birth control)
hyperpigmentation on scars
Severe episodes of fatigue that hit suddenly (most days I'm full of energy but when it hits I'm so fatigued it's hard to walk or breathe)
Toe/foot cramps every day(ouch!)
During my attacks I have neck stiffness, fatigue, balance issues, auras, pressure in face and head, anxiety, numbness, vertigo, nausea, loss of sensation when urinating, uneven pupil dilation, sensations of ice water falling on me, and ear pressure. I have NO headache. Migraines usually have symptoms like this that last for hours before the headache. Mine last for several days at a time.
I find I feel much better when I meditate and stretch each night. I feel really terrible when I get hot or when I exercise (I get dizzy and numb). Hot showers sometimes bring on an attack but I've been tested for MS and my tests were clear.
Thanks again!
That's just bizarre that you have the same symptoms. I'd like to get my mercury levels checked. You should get tested for hughes syndrome. Get these two tests:
Anticardiolipin Antibodies (aCL)
Lupus Anticoagulant (LA)
Here's a web site http://www.hughes-syndrome.org/diagnosis.htm
I tested negative even though I thought it was my answer.
It's nice to know I'm not alone. Let me know how you do with the Marshall Protocol.
Anticardiolipin Antibodies (aCL)
Lupus Anticoagulant (LA)
Here's a web site http://www.hughes-syndrome.org/diagnosis.htm
I tested negative even though I thought it was my answer.
It's nice to know I'm not alone. Let me know how you do with the Marshall Protocol.
One more thing I forgot, I had test results showing extremely high levels of mercury & lead, and my hair never fell out, I have the normal loss of a few hairs a day, but nothing like others have gone through. So it's not always a sign of mercury poisoning.
Take care!
Take care!
Holy cow Kim, except for the pupil dilation and energy most days, it was like reading exactly what I've been going through, right down to the Melasma! EVERYTHING! I tried chelation for my diagnosed mercury and lead poisoning, I belive it works, just not for me, I had too many bad reactions to it. Do keep a diary of symp's, I felt dumb doing that at first, thought the doc's wouldn't care, but each time I showed a complete list of symp's to doc's (last 4 of them) they appreciated it and read through the list right in front of me, and commented or asked questions as they read. It was really the only time they were paying attention to what I was telling them. They kept copies so at least it's documented! I'm so with you on the Aspartame! And love the idea of the reality show! :)
The Marshall Protocol is pretty scary if you just scan the site briefly. Its very complicated, and it took me a good week before I wasn't terrified of it. Maybe it's something you can keep in mind. If you decide to go back a look some more, do a search on "Hypervitaminosis-D" and check out the symptoms. It's a lot to take in, but worth it if it means finding a cure, or even a diagnosis!
Hope you're holding up, hang in there!
The Marshall Protocol is pretty scary if you just scan the site briefly. Its very complicated, and it took me a good week before I wasn't terrified of it. Maybe it's something you can keep in mind. If you decide to go back a look some more, do a search on "Hypervitaminosis-D" and check out the symptoms. It's a lot to take in, but worth it if it means finding a cure, or even a diagnosis!
Hope you're holding up, hang in there!
I'm 38 and have same symp's, doctors keep telling me it's my FMS, but I've had FMS flare ups for 14years, these symp's (like yours) I just got in past year are different, but doc's don't seem to bother trying to figure out if something else could be wrong once they hear I have FMS. These symp's you described point to a number of things, just a few I had been checked for (but tests were negative) was MS, Lyme, epilepsy, Lupus, RA and several others. I know the disappointment of NOT getting a diagnosis. I recently started the Marshall Protocol, and found out through blood tests that I have Th1 inflamation. I just started the protocol, so I can't tell you if it's worked yet, but I believe that it will, Their site is confusing at first, but check it out marshallprotocol.com, I really think this is my answer that I've been searching for for many years. Hope it helps. If anything, know you're not alone!
Please visit www.theonedollarcharity.blogspot.com and let me know if you would like to apply to be a receipient. I understand your frustrations.
Take care and God bless,
Ted H.
Take care and God bless,
Ted H.
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