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Brain & Nervous System Disorders Message Board


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Hi there,
I'm a 27 year old male, have always been pretty normal and healthy, really I have almost no "regular" aches and pains or illnesses or problems to speak of. Back in April of 2007, I got a regular cold, went away after a few days but then I got this bout of dizziness that started a couple days after. Was bad for like 2-3 days and stayed around for a week, then went away completely. Doctor said it was normal, didn't think any more of it.

A few months later, the same sort of symptoms came back, for no apparent reason this time, and then I woke up in July of 2007 one morning and I had a bad case of dizziness and some new tingling/numbness in my legs. This sent my heart racing. Saw doctors (internal medicine, ENT) again, still was told it was nothing and would go away with exercise.

But it didn't go away. It has never gone away. It seems to be perpetually going in cycles, better for a few weeks, then worse, but always around. The actual issues of dizziness have changed slightly over time, it's never really like a spinning feeling (vertigo), more just off balance, kind of wonky, which makes concentration difficult. It seems to be worse when I drive, or when I use the computer, which makes things difficult since I'm a software developer and definitely worse when I drink alcohol, which I barely do anymore. Overall, the dizziness is not any worse than it was when it started, and on average is probably better.

The bigger worry has been these other symptoms which are not getting better, they're getting more frequent, more intense and more varied. Lately I've been having issues with numbness/tingling in my hands/feet and to a lesser extent in my arms and legs. Muscle weekness/shakiness in my legs and less so in my arms. I also just recently got some twitching in my left pinky. Last night I woke up in the middle of the night and had some pronounced pins and needles in most of my body. I got up, walked around and felt better.

I have a GP, who's pretty good, he's always recommended me to specialists. I've seen a different ENT, who told me my problems were not ear related (which I originally thought they were), as I passed an ENG exam last year. In March of this year, I was given an MRI covering my ears and my brain. I wasn't given any details of the MRI, but was told by my ENT, and subsequently my neurologist that it was normal. All physical exams testing for cognitive function, hand eye coordination, muscle power and response have been negative for any dysfunction.

So my neurologist concluded I was fine, that it may have been vestibular neurosis at one time and now it was just anxiety perpetuating the problems. Told me to get plenty of exercise and it would go away. This was back in late April of this year. The funny thing is that as soon as I saw him, I had already been feeling better, and I just kept on improving. Got married in early May, went on my honeymoon and felt fantastic the whole time. Almost no issues. Got back and since then it's been the same thing, cyclical ups and downs although recently like I said I've had these worsening secondary issues. So not sure what the trigger there was, was it less anxiety, less computer use, just happened to be in a "good" cycle, combination of all 3?

I have a new appointment with the same neurologist in 2 weeks, and I'm seeing a new neurologist soon after that. I have no idea what it could be. Was originally told it might be MS, but later on with the test results, that was ruled out.

Looking for any sort of insight on the problem here. The only abnormal test result I've had was a slightly decreased but stable platelet count, which no one has suggested is linked to this problem.

I am not myself anymore, I'm constantly worrying about these health issues, and it really impacts my life. I try to stay active and never try to let these issues get in the way of life, but it's hard. I love my life otherwise, I just want to get back to it and be normal again. I'm holding back career opportunities at this point in order to stay in my stable job.

Thanks so much in advance and sorry for the long winded post.
Adrian
[QUOTE=asmielia;3736838]Hi there,
I'm a 27 year old male, have always been pretty normal and healthy, really I have almost no "regular" aches and pains or illnesses or problems to speak of. Back in April of 2007, I got a regular cold, went away after a few days but then I got this bout of dizziness that started a couple days after. Was bad for like 2-3 days and stayed around for a week, then went away completely. Doctor said it was normal, didn't think any more of it.

A few months later, the same sort of symptoms came back, for no apparent reason this time, and then I woke up in July of 2007 one morning and I had a bad case of dizziness and some new tingling/numbness in my legs. This sent my heart racing. Saw doctors (internal medicine, ENT) again, still was told it was nothing and would go away with exercise.

But it didn't go away. It has never gone away. It seems to be perpetually going in cycles, better for a few weeks, then worse, but always around. The actual issues of dizziness have changed slightly over time, it's never really like a spinning feeling (vertigo), more just off balance, kind of wonky, which makes concentration difficult. It seems to be worse when I drive, or when I use the computer, which makes things difficult since I'm a software developer and definitely worse when I drink alcohol, which I barely do anymore. Overall, the dizziness is not any worse than it was when it started, and on average is probably better.

The bigger worry has been these other symptoms which are not getting better, they're getting more frequent, more intense and more varied. Lately I've been having issues with numbness/tingling in my hands/feet and to a lesser extent in my arms and legs. Muscle weekness/shakiness in my legs and less so in my arms. I also just recently got some twitching in my left pinky. Last night I woke up in the middle of the night and had some pronounced pins and needles in most of my body. I got up, walked around and felt better.

I have a GP, who's pretty good, he's always recommended me to specialists. I've seen a different ENT, who told me my problems were not ear related (which I originally thought they were), as I passed an ENG exam last year. In March of this year, I was given an MRI covering my ears and my brain. I wasn't given any details of the MRI, but was told by my ENT, and subsequently my neurologist that it was normal. All physical exams testing for cognitive function, hand eye coordination, muscle power and response have been negative for any dysfunction.

So my neurologist concluded I was fine, that it may have been vestibular neurosis at one time and now it was just anxiety perpetuating the problems. Told me to get plenty of exercise and it would go away. This was back in late April of this year. The funny thing is that as soon as I saw him, I had already been feeling better, and I just kept on improving. Got married in early May, went on my honeymoon and felt fantastic the whole time. Almost no issues. Got back and since then it's been the same thing, cyclical ups and downs although recently like I said I've had these worsening secondary issues. So not sure what the trigger there was, was it less anxiety, less computer use, just happened to be in a "good" cycle, combination of all 3?

I have a new appointment with the same neurologist in 2 weeks, and I'm seeing a new neurologist soon after that. I have no idea what it could be. Was originally told it might be MS, but later on with the test results, that was ruled out.

Looking for any sort of insight on the problem here. The only abnormal test result I've had was a slightly decreased but stable platelet count, which no one has suggested is linked to this problem.

I am not myself anymore, I'm constantly worrying about these health issues, and it really impacts my life. I try to stay active and never try to let these issues get in the way of life, but it's hard. I love my life otherwise, I just want to get back to it and be normal again. I'm holding back career opportunities at this point in order to stay in my stable job.

Thanks so much in advance and sorry for the long winded post.
Adrian[/QUOTE]
Good Morning to you Rainbows End(I really like your name!)

How is the weather in Australia?...it is only 56 here and was sligtly rainy yesterday evening(rain is not my friend!makes my joints ache and sinus act up....not fun at all!).Yes you are right on target about being more apt to get viruses and such when our B12 is low.......so lovely,isn't it?haha!

I will ask my dr. about the methylcobalamin shots(he will probably say there's no difference...you know he's a bit unexperienced in all aspects of medicine...hahaha!

Did you have bad side effects from the cyanocobalamin?I read that it's synthetic B12...I don't like that fact at all!

Yes I had a really lot of problems with my spine before the shots..it's only gotten better the last 2 months.That acid reflux thing I had last friday was a first for me...hope I don't get it bad like that again!

Oh yes I noticed that when I went 2 months without the shot my hands were falling asleep at night and I haven't had that happen for at least a year.I know I'm going to have a lovely visit with my dr. next time(Oct.23rd).....I'll be lucky to get any solid answers/feedback from him,but I'm going to try my best to get what I want!

What do you think about iron...I ask because I'm wondering if it's possible tohave low iron also besides low B12.I want to ask him to check my ferritin,because I have been very low in that before.I still have a lot of weakness in my hands and also in my legs/feet when I'm standing for a bit long.I forget if you told me,but do you also take a multi-vitamin tablet?

I just feel like I need more strength...and energy...I am tired most of the time...I sleep a usual 6 to 7 hours a night,but once in awhile I get 8 to 9 hours.I continue to lose weight which I know is because I don't have a big appetite.I am 5'6'' and weigh 109 lbs.(don't know what the conversion is in Australia,but I'm very lean...not a skinny-bones,just thin).My neurologist said I need to have physical therapy,because my hamstrings are very tight,but I think I'd be exhausted just from that...I'll have toask my GP about that(of course he won't have anything to say about that either!).

I forgot,but what is the normal range for B12 at your labs?

Very interesting about the gluten and celiac....I was only tested for sprue(spelling?)..it was negative and I had a "stool" test again and it came back negative just recently.

When I went the 5 years without B12 shots I never really felt okay.Then when I got sick again(worse than the first time!) I remembered that the hematologist who first diagnosed me said that it takes 3 to 5 years to use up your B12 stores and then you're deficient again...so I know that's what happened to me......foolish me!

So I'm going to research upon methylcobalamin so I can be knowledgable about it when I face the good old dr.(I'm so sneaky,aren't I?haha!).

Thanks for your Excellent advice dear friend!!!Have a fabulous wednesday!

Scout ~
[QUOTE=scout316;3754728]Good Morning to you Rainbows End(I really like your name!)

How is the weather in Australia?...it is only 56 here and was sligtly rainy yesterday evening(rain is not my friend!makes my joints ache and sinus act up....not fun at all!).Yes you are right on target about being more apt to get viruses and such when our B12 is low.......so lovely,isn't it?haha!

I will ask my dr. about the methylcobalamin shots(he will probably say there's no difference...you know he's a bit unexperienced in all aspects of medicine...hahaha!

Did you have bad side effects from the cyanocobalamin?I read that it's synthetic B12...I don't like that fact at all!

Yes I had a really lot of problems with my spine before the shots..it's only gotten better the last 2 months.That acid reflux thing I had last friday was a first for me...hope I don't get it bad like that again!

Oh yes I noticed that when I went 2 months without the shot my hands were falling asleep at night and I haven't had that happen for at least a year.I know I'm going to have a lovely visit with my dr. next time(Oct.23rd).....I'll be lucky to get any solid answers/feedback from him,but I'm going to try my best to get what I want!

What do you think about iron...I ask because I'm wondering if it's possible tohave low iron also besides low B12.I want to ask him to check my ferritin,because I have been very low in that before.I still have a lot of weakness in my hands and also in my legs/feet when I'm standing for a bit long.I forget if you told me,but do you also take a multi-vitamin tablet?

I just feel like I need more strength...and energy...I am tired most of the time...I sleep a usual 6 to 7 hours a night,but once in awhile I get 8 to 9 hours.I continue to lose weight which I know is because I don't have a big appetite.I am 5'6'' and weigh 109 lbs.(don't know what the conversion is in Australia,but I'm very lean...not a skinny-bones,just thin).My neurologist said I need to have physical therapy,because my hamstrings are very tight,but I think I'd be exhausted just from that...I'll have toask my GP about that(of course he won't have anything to say about that either!).

I forgot,but what is the normal range for B12 at your labs?

Very interesting about the gluten and celiac....I was only tested for sprue(spelling?)..it was negative and I had a "stool" test again and it came back negative just recently.

When I went the 5 years without B12 shots I never really felt okay.Then when I got sick again(worse than the first time!) I remembered that the hematologist who first diagnosed me said that it takes 3 to 5 years to use up your B12 stores and then you're deficient again...so I know that's what happened to me......foolish me!

So I'm going to research upon methylcobalamin so I can be knowledgable about it when I face the good old dr.(I'm so sneaky,aren't I?haha!).

Thanks for your Excellent advice dear friend!!!Have a fabulous wednesday!

Scout ~[/QUOTE]

My Dear scout

How are you going today?

The weather here is fabulous it is gentley warm and the birds are singing the garden is blooming we live on the coast but on a bush block so there is so many birds just lovely I have my children on holidays although it finishes to day so all is well........

How did you go on your research it is good to be sneaky at times.......You could always suggest to him that he use you as a guinea pig LOL with the methyl he will be pleasantly surprised by the results and probably learn something (hahaha)....

Ask him to do a blood test for celiac disease if this comes back positve or borderline he may want to do an endoscopey my test were non conclusive because I had stopped the gluten although my bloods were borderline but my doc said if you feel better dont eat it that all the proof you need but I slip way to much....

It is very possible to have an iron problem at the same time my ferritin was on the lowish side........As a matter of interest most celiacs have low iron, B12, vit D and folate.......

With your energy levels that could be iron related agian gluten, but you may not be getting AD-B12 either which works on the mitchrocondria in the cells which help with energy....You can get this online you probably wont find it in your local chemist I can let you know.........

I lost me appetite before I was diagnosed and lost weight too I am only 5ft and weighed 47kg I have always been small but ihave gained a couple of kilos now 49kg ......
When I eat lots of gluten I actually gain weight get very bloated stomach cramps and diarrhea yuk. My skin looks crappy as well.....The thing is this probably caused my defieciencies if I dont eat gluten I should be right in the end as I dont have any antibodies to intrinsic factor or the like.........But my doctor wants to keep me on it anyway........So as you can see having the teat is great but doing the diet challenge also works as well as you can still have a problem with gluten but have normal tests results just like the B12 really......

Have a fabulous evening/day its all different here!

Speak to you soon buddy
Cheers
Rainbows End (ps I choose this name because when found out about my b12 problem it was like finding the end of the rainbow what a relief I wasnt going to die after all.....because at one point I thought I was )
Hi Betsheba~

Thanks so much for joining in here. Lyme is another one of those crazy illnesses that leave people undiagnosed for a long time. And so many stop in here with mystery symptoms and are in need of support. So the more people here, the better;)

Over a year ago when my neurological symptoms became life changing, I did alot of delving into Lyme. My symptoms were so very similiar. I went through various testing and in the end, I had a lumbar punture to rule out lyme, ms and as well as other stuff. This lumbar puncture ruined me, truly. I was in rough shape but I was living a normal life.

Then my headaches came full force as well as nerve pain through out my whole body and I became disable from this. It was then that I learned of Chiari and to NEVER have an LP because it will make things a whole lot worse. So given that as a factor I let go of the search for a lyme MD and excepted my dx. I know with lyme, the LP would not have rocked my world:D

But, it definately is something that people need education about. When they get a negative lyme, they take the dr's word they don't have it. So I'm really glad you came here to educate.

It was a pleasure meeting you!!~

Cindy





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