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Old 09-22-2008, 08:26 AM   #1
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asmielia HB User
Dizziness, numbness, tingling

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

Last edited by asmielia; 09-22-2008 at 08:28 AM.

 
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Old 09-22-2008, 06:55 PM   #2
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cindys601 HB User
Re: Dizziness, numbness, tingling

Hi Adrian~

I'm so sorry that your having to deal with so much and not getting any answers from Dr's. IMHO, it does sound like theres something neurological going on.

I went through this for the last couple of years where they had thought MS and it was ruled out. Every test was negative and Drs hit a brick road so they finally decided if they couldn't find anything, it had to be anxiety.

I know my body and knew something was wrong so I started a folder for myself. Any Dr or test I had done, I requested copies and filled my folder. This saved alot of time if I was seeing a new Dr and he wanted test results. Or if they wanted to perform any tests, I could show them the ones I had in my folder. So start requesting copies of your MRI, ENG and anything else you can obtain. The hospitals are very good about giving this information.

In the end, my MRI was found to be "normal" when it was read by radiology. Months later, I found an abnormality myself and the MRI was reread and I got a diagnosis of Arnold Chiari malformation.

Dr's are not miracle workers, for sure. There are many diseases that mimic MS symptoms and sometimes it takes time to finally hit on something. It sounds like you have a great GP on your side so thats half the battle.

Try to not let stress get to you, even though all this in itself is stressful. But stress can definately make things worse. Easier said than done, right?

Congratulations on your new marriage!! Try to focus on those good things in life at this point. And be strong, advocate for your own health. A number of things could be going on for you. Hang in there and I hope you can get some answers soon!!

Take care

Cindy

 
Old 09-23-2008, 12:03 PM   #3
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asmielia HB User
Re: Dizziness, numbness, tingling

Hi Cindy, thanks for your response, it was most appreciated. My wife actually has a Chiari Malformation as well, as rare as it is. She's mostly asymptomatic, but has a bit of tingling in her hands from time to time. For now they're just monitoring it.

Well, all I can do for now is wait, but when I see the neurologists there's no way I'm walking out of there with a "get some exercise" recommendation and that's it. Hopefully I get some answers soon.

Thanks again

 
Old 09-23-2008, 06:31 PM   #4
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aether4 HB User
Re: Dizziness, numbness, tingling

It would probably be best if they could check what that "cold" could have been. Lots of things cause cold/flu like symptoms early on in infection but can later go on to cause some neurological/nervous system issues. Other possibilities, if the "cold" was involved is that it could have triggered something or caused some damage on it's own.

 
Old 09-23-2008, 07:43 PM   #5
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cindys601 HB User
Re: Dizziness, numbness, tingling

Hi Adrian~

You definately have to be strong to get through this and stand your ground. I really dont think additional exercise will eliminate your symptoms myself

I'm glad your wife is managing well with her chiari. Being asymptomatic is awsome but tell her to be kind to her body to keep things the way they are. I did alot of damage thinking I was a work horse my whole adult life. Wish her well for me.

And for you, I hope that you can get some answers soon. Hey, just a thought but have they done a spinal tap yet? This can check for infections within the CFS fluid. Where this started as a cold, maybe there is something there? I'm definately not a Dr but meningitis can lead to alot of neurological symptoms as well as lyme and many many more.

Keep us posted. I'm curious to hear what it turns out to be. Hopefully quickly for you sake

Take care

Cindy

 
Old 09-24-2008, 07:37 AM   #6
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pamg6 HB User
Re: Dizziness, numbness, tingling

Ask your neurologist if it could be migraine related. Do you have/had migraines? do you have family history of migraines?
You do not need to have headaches to have migraine. I would ask about this when you go in

Pam 3

 
Old 09-24-2008, 02:55 PM   #7
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asmielia HB User
Re: Dizziness, numbness, tingling

Quote:
Originally Posted by pamg6 View Post
Ask your neurologist if it could be migraine related. Do you have/had migraines? do you have family history of migraines?
You do not need to have headaches to have migraine. I would ask about this when you go in
Thanks for the responses.

I've never had a migraine. It's pretty rare that I get headaches and I've never had any of the associated symptoms.

As far as the suspicions that it might be related to the cold, I think that's definitely a possibility. The cold itself was normal, of moderate severity, but I just got a bad bout of dizziness starting about 2 days after the bulk of the symptoms had subsided. It was enough to keep me from working for a few days, but like I said, after about a week it was gone completely. It was only months later that I started feeling the same symptoms returning, and since then they've never gone away completely.

I've had numerous blood tests over the past 2 years trying to find a link, but no doctor has ever mentioned anything abnormal (apart from the low platelets I mentioned). I doubt it's meningitis, I have none of the symptoms. I'd say lyme disease is also quite unlikely, given my symptoms, doesn't seem to match up.

I haven't had a spinal tap. Aren't those dangerous and painful? There hasn't been a reason to have that done. As of yet, no doctor has actually confirmed that anything is wrong with me.

Adrian

 
Old 09-24-2008, 03:12 PM   #8
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cindys601 HB User
Re: Dizziness, numbness, tingling

Hi Adrian~

Most people go through the lumbar puncture with quite ease and little complaints, though they can sometimes lead to a CFS leak, needing a blood patch to close it up.

Speaking from my own experience, after my LP which was not a good experience, I was told that someone with chiari should not have this done. Go figure

Your really stuck in a difficult situation. The symptoms are not showing enough to raise a red flag to Dr's. And then again, the cold could have nothing in common at all with whats happening now, just seperate incidenses. So maybe using the cold as a beginning symptom is throwing the Dr's off?

Cindy

 
Old 09-24-2008, 06:05 PM   #9
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robinegg HB Userrobinegg HB User
Re: Dizziness, numbness, tingling

Dear Adrian

How are you going today
I noticed your posts and would like to throw something into the mix if thats ok.
I had symptoms like you plus many more for 5 years.....
I had all the tests ect, bloods,MRI's,coloscopy,endoscopy, x-rays,ultrasounds,cts......(thank goodness they are free here)

They would wax & wane some were continueous others got worse each time
Any way we finally found out what is was I have a B12 deficiency.....sounds simple doesnt it yet it mimicks,MS,Mecury toxicity,and other and has simolar symptoms to Chairi (I hope i got that right) I guess it would as it affects the nervous system...It is complex and can cause massive of damage and problems
The good side is it is easily treatable and tests are easily performed there are specific test you should get so if you want to know I can tell you what they are..I can also let you know my symptoms & experience....We also discovered I have a gluten intolerance which has caused this but there are so many reasons you can have a deficiency.......Gluten can cause a lot of symptoms too yuk.....
Let me know if I can help any further Adrian have agood day


Hi Cindy
I read up about your condition wow what can I say the symptoms are similar I have to say.....Nervous system stuff is all similar i guess......
Did you get this becuase of the car accident you had as I read that can cause it please correct me if I am wrong....Its making me think as I know someone who has one pupil dilated gets very bad headaches I read about the pupil thing too they told him oh thats just some knid of syndrome adie I think,but I dont know about that......Thanks for bringing that awareness
Hope you have a great day too

 
Old 09-25-2008, 06:57 AM   #10
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cindys601 HB User
Re: Dizziness, numbness, tingling

Hi Rainbows End~

Yes, we definately both know what its like having something that affects the nervous system and we probobly walk the same path, though we are dealing with 2 seperate issues. Fun fun fun!

Chiari is a congenial birth defect, actually. When the skull is forming it is litterally too small for our brain and the brain is squished. Car accidents can cause the brain to descend into the spinal canal. Falls, bumps even heavy lifting or straining.

I actually had been rear ended 3-4 years ogo. At the time,the insurance company had asked if I was hurt and i told them my neck was sore but I'm not one to cry whiplash. Little did I know that my health would decline very quickly since then. So I do believe that the accident caused the progression for me.

The pupil thing is knew to me. Whats that all about? I haven't heard that one?

Bringing awareness to these boards is very important to me because it was because someone elses post that i was finally able to get a diagnosis after a very long time of Dr's thinking I was nuts. And the thought of others going through that same thing is just heart breaking to me. If I can just offer support while someone is struggling through the process, I'm happy.

B12 is also another very complex thing and you being here to help with that is great. I've been following your posts and it seems that Dr's aren't delving deep enough when peoples levels are low but in the normal range. So your advice here is very helpful too I actually had someone on another chiari post here ask about the B12 and I'm not knowledgable enough to answer that one. Maybe you can chime in and give lRoberts some additional info on that one.

Its great getting a chance to chat. I hope your feeling better these days and your treatment is helping you overcome!!

Take care

Cindy

 
Old 09-25-2008, 09:26 AM   #11
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asmielia HB User
Re: Dizziness, numbness, tingling

I don't think I have a B12 deficiency. This was covered in an extensive blood test I had earlier this year. Abnormal B12 levels start at 150 and below. My blood test reported a B12 level of 293.

Glucose, Iron, white, red bloodcell counts were all normal. At this point, I'd say it's unlikely to be a nutrient deficiency.

 
Old 10-01-2008, 12:25 AM   #12
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robinegg HB Userrobinegg HB User
Re: Dizziness, numbness, tingling

Quote:
Originally Posted by asmielia View Post
I don't think I have a B12 deficiency. This was covered in an extensive blood test I had earlier this year. Abnormal B12 levels start at 150 and below. My blood test reported a B12 level of 293.

Glucose, Iron, white, red bloodcell counts were all normal. At this point, I'd say it's unlikely to be a nutrient deficiency.
Hi There
I am afraid i will have to disagree with you symptoms can present at a reading of 500 yours is on the low side for sure there is one way you can find out for sure and that is to have these two tests done they are uMMA & Homocysteine levels they will be elevated with a true deficiency even if you are in the normal range so to speak...It is interesting to note that in Japan and some European countries the level is 550-2000 anything below gets treatment its my view that levels need over hauling for sure.......
The thing is it is wise to rule this out as it is easy to treat and if you dont y ou will continue to get worse I was presenting symptoms 5 years ago with a reading of 372 it fell with each test until it finally got to 130 now they beleived me & I had to get severe problems at that time....But with the right treatment and a good doc who has treated me with aggresive therapy Methylcobalamin 10,000mcg 3 times a week I am getting better all the time I now have returned felling in my hands and feet......
Also remember all other bloods can be perfect just beacuase you dont have anemia doesnt mean you dont have a deficiency .....B12 is soooo important to the body I certainly had no idea just how much and though well its just a vitamin so it couldnt possibley be causing all this boy for me I was wrong....I believe if my new doc had not run those tests (my old doc said she wouldnt have bothered as last time it was normal) I would.and i am not either be in a wheel chair or a mental institute or at worst dead no joking around .....

Good luck
take care

 
Old 10-02-2008, 05:34 PM   #13
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steve1906 HB User
Re: Dizziness, numbness, tingling

Quote:
Originally Posted by asmielia View Post
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

 
Old 10-02-2008, 05:39 PM   #14
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steve1906 HB User
Re: Dizziness, numbness, tingling


Good evening!

I feel like I wrote your letter for you, regarding how (you, I feel): It's like looking in the mirror at your note.

I'm seeing a new Doctor and I'll keep you updated.

Say in touch...

Have a good night,
Steve

 
Old 10-03-2008, 05:15 AM   #15
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cindys601 HB User
Re: Dizziness, numbness, tingling

Hi Steve~

Sorry to hear your going through this as well. I wish you luck at your appointment and hope you get some answers

Take care

Cindy

 
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