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
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!!
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.
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.
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
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
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.
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?
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
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!!
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.
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 .....
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
Hey everyone. Well yesterday was pretty disappointing. After waiting 3 months for an appointment with my neurologist, and planning what I was going to say, I got to his office to see he was running behind schedule. I took 3 hours off work to make this appointment and by the time he ended up seeing me he spent about 5 minutes with me.
The visit was basically useless. I told him about my increase in symptoms, he did a super quick physical exam testing basic senses, hand eye coordination and ability to walk straight, then said there was nothing he could see wrong with me and it was probably due to anxiety. All he did was schedule another MRI making sure to cover the whole brain even though he also said he was 99% sure it wouldn't find anything, then said he was really busy and that was it!
Arghhhhh, how annoying. Just because I'm young and look normal, doesn't mean there's nothing wrong with me.
I've basically split things up into 3 possible categories:
1. There's something wrong with my brain which is causing it to misinterpret signals coming from my nerves (such as MS or a Chiari malformation)
2. There's something attacking my nervous system, possibly my own body misinterpreting what needs to be attacked (MS, lyme disease)
3. My body is unable to repair nerve tissue normally (B12 deficiency)
I told the doctor my ideas and he basically dismissed them all, except for #1 and since the MRI is clear, I must be fine according to him.
I have no desire to see that guy again, even though he has good reviews from people. He's just too busy to care. Luckily I'm seeing a new neurologist next week, so hopefully he'll be more receptive.
I also want to see my GP about getting my B12 levels up. Even if that's not the cause, there's no harm increasing my levels a bit and seeing if that has any impact.
Very frustrated though, I'm glad we have socialized medicine in Canada cause I haven't had to pay a cent for anything, but this is one of the downsides of it.
My heart goes out to you, it really does. I can visualize that visit so well when I would see a knew Dr. It really amazes me how insensitive they really can be.
But the thing that kept me going was the advice of my GP when I started my journey to a diagnosis. He said he believed me, that something was wrong and told me I would have to convince the specialists that there really was something wrong. I asked him how I could manage that and he said "don't give up. Crazy people give up". So, what he was really saying to me was people that are hypocodriacs, after a while, they don't go back for the same thing. They go back with another complaint. I kept his advice inside my head, each and every time I was rejected like you were today. Don't let them get you down. Hang tough
The 3 catagories that you've put down, the #1, my MRI was read as normal so things can be missed. If its not a common condition, they may not be looking close enough. Just like my chiari. But then the neurologist oppologized when I pointed it out and said he wasn't looking for that. So, just because its "normal" doesn't always mean it. Only someone verse in chiari or is looking for it will recognize it.
#2 MS and lyme are both very tricky. MS can take a very long time to show itself and Lyme tests can be very innacurate
#3 B12 defficiency, theres been alot of talk lately here on the boards about low levels that read "normal" actually causing symptoms and using other tests to clarify it. Rainbows end or Scout both might be able to say more on this subject.
When we tell Dr's what we think may be something to look into, for some reason they don't like that. They would rather a light bulb goes off in their own heads I think they just really need to take the time to listen more. But I doubt we'll see that.
I hope this next neurologist takes a little more time with you and really listens. But in the meantime, you have us here, for support!!
hey Adian! this is a longgggg thread!could you update me on your symptoms?
Sure, yeah it is a long thread. The main symptom that has been consistently a problem is the "dizziness". Not vertigo, just a feeling of being off balance, accompanied frequently by a light and non-painful feeling of pressure on various parts of my head. Almost like being drunk in some ways, it makes me feel less coordinated, difficult to concentrate.
Other variable and less annoying symptoms are:
-numbness/tingling in hands/feet/legs/arms (pins and needles)
-weakness/shakiness in legs/arms
-twitching in right hand
I can also say without much doubt that sitting in front of a computer or TV screen over long stretches (such as a full work week) makes the dizziness worse. As does driving, and drinking alcohol. Whereas staying away from it brings an improvement. But I doubt very much that this is the cause of the issue, most likely it just aggravates it.
Hi Adrian! The pins'needles feeling is a classice B12 symptom along with the off-balance,dizziness,weakness.Other symptoms are confusion,cold hands/feet,sometimes a glossy red sore tongue,but some people will have a very pale tongue/gums.Shortness of breath(like you're having asthma) especially after doing tasks...sometimes numbness in arms or legs.less of an appetite....I had a real sensitivity to cold temperatures too and my fine touch was compromised(couldn't hold change in my hands without feeling like it weighed a ton,also some materials,etc. felt "funny" to the touch.
I have experienced that pressure feeling in my head,but I'm not sure that's due to the low B12.
You've probably heard that low B12 mimics MS....and that it does!My first doctor was Sure I had MS!
I had stomach problems,but not too severe.When your B12 is low your acid in your body goes up,because B12 neutralizes the acid.Even if you have a "normal" B12 level you could still be deficient......in Canada your labs are probably different in the way they measure B12...here in the United States they say normal is 200-1100...mine was 222 and they found I had a hidden B12 deficiency,because under 400 points to a problem and many people start getting symptoms.I had every symptom and my doctor said he couldn't find anything besides a low white count and borderline low platelets.
Do you have any idea what your B12 level is?If you get a B12 test ask your dr. to do the other tests along with that...like homocystein,folic acid and methylmalonic acid.
