Strange Neurological Symptoms

I started to feel hungover/under the weather in December, then I had the flu over Christmas. A week after this I felt faint when I was eating my dinner, almost felt like my body was shutting down, like a stroke. I went to A&E and they said it was a virus after I had an ECG and diabetes tests. I then felt very dizzy for the next 3 mths, with 2 more fainty type episodes. During this time I also developed tinnitus and nausea and had constant pangs throughout my head and a running water sensation behind my ears, as well as a stiff neck and headaches which I have never suffered with before. For the last 2 months I have had a burning sensation all over my body, but mainly my head, tops of legs and neck/upper back (like I am sunburnt). I have also developed twitching, like a heart beat under the skin that twitches 3 times and moves through my body to different parts. My eye sight has also become very blurred, so I find things out of focus/blurred around the edges and it feels like it is getting worse. The backs of my legs also ache. I also have jerking sensations, especially when I am asleep as well, in my hands and legs. The dizziness is still there, but more like a rocking sensation, like I am on a boat, rather than spinning. My ears also crack when I swallow and feel full. The tinnitus is still constant. I am also having problems thinking/ remembering. I am 29 year old male, never ill before this. I have had an MRI, evoked ptentials, peripheral nerve tests, blood tests. Only abnormality was high ALT levels. Symptoms are making it hard to function, any ideas what it can be?

[CCF-Neuro-M.D.-SH]

First keep in mind that I am unable to diagnose you, because I cannot examine you and that this forum is for educational purposes only. The symptoms you describe are all possible with a viral infection.  I sounds like you have had a viral infection of the inner ear, which causes vertigo (the sensation of movement without acutal movement, like room spinning, rocking on a boat, etc).  This also causes tinnitus (which is sounds in the ear such as buzzing, ringing and water rushing).  Inner ear infections tend to get better in time, but people often benefit form medications such as meclizine, valium, scopolamine and also balance/euilibrium physical therapy. The concerning part of your story is the history of stiff neck, headache and various sensory symptoms.  This sounds like the virus could also have affected your brain in a meningitis/encephalitis (brain covering/brain infection).  This happens on occasion and can have srious consequences, but often people make a complete recovery.  Due to this concern, If your symptoms persist, you may ask your neurologist about a lumbar puncture for Viral PCR, Viral titers, and make sure your MRI Brain was done with contrast.  This is anti-viral medications for some viral infections such as acyclovir, valtrex, famvir etc that can be used if your doctor agrees.  The elevated ALT can also be found in viral infections, especially viruses like EBV/CMV at tend to affect the liver.  The twitches that you are describing are also commonly seen after a viral infection and are called benign fasicualtions, which are not harmful and should subside with time.  In summary, the symptoms you describe suggest you have had a viral infection that has affected your inner-ear, possibly your brain covering/brain and your liver. I would suggest seeing a neurologist that specializes in balance and vestibular problems, and that if your symptoms persist or are progressing I would reccomend and lumbar puncture and anti-viral medications.  I hope this has been helpfull.

[adambuck]

I am in London? Not sure that is?

[Aub]

I tried yesterday to post.  How did you post this question?
I tried between the hours someone suggested between 8 and 11 EST from the west coast (Seattle).  I tried writing to the forum administrator and they do not answer my questions.

Aub
Seattle, WA

[who_is_this]

Did you not see that I also told you (at least twice) it can take WEEKS to get on?  Think about it--there are probably hundreds of people all over the world, competing for the 2 QUESTIONS PER DAY that are allowed on this site.  It's sheer luck when you get on.  

I repeat: IT CAN TAKE WEEKS TO POST, SOMETIMES YOU GET LUCKY AND IT'S SOONER, AND SOMETIMES IT COULD TAKE A MONTH.  

[zzzzzzzzzz]

I've been trying for over 6 months with no luck, so I posted on the undiagnosed symptoms forum and found that very helpful. I also read all posts with similar issues to mine and so, although I've never had the oppertunity to have my own question answered, I do get a great deal of help from this site.

[AK52]

Adam, have your eyes checked by eye doctor if not already done. You may have contracted Blepharitis due perhaps to a malfunctioning tear gland. This condition needs attention to avoid damage to the cornea.

[elib]

Go see A Neurologist, and if you do not agree with the first one, get a second opinion.  Your health should be your top priority.  Good Luck!

[malden]

Hi adambuck. I posted on this board in February with exactly the same symptoms that you have. I have since had a few blood tests and a CT scan. I have seen a neurologist and a rheumatologist. I have been given a diagnosis of Chronic fatigue syndrome but I am not happy as I feel that other conditions that can cause my symptoms have not been excluded. I am in London like you and I will advice you to be proactive in the pursuit of your own health as a lot of doctors don't care enough. First try and look beyond the NHS (it is nigh on useless) by arranging blood testing at specialised labs like TDL (their website is www.tdlpathology.com. They arrange blood testing for virtually everything. They can check you for CFS (

[tropicalgarden]

I too have some of the same symptoms as you.. mine began with episodes of dizziness, a feeling like I was going to passout, and a spinning sensation all at one time, and I was first diagnosed as simply being dehydrated for the first 3 episodes.
All 3 I got better after a week or so. All of the symptoms went away. The fourth episode left me with constant dizziness, off balance feeling, a feeling of heaviness when I walk (like I am going to pass out), a spinning sensation that lasts for seconds to minutes, tired all the time and many more symptoms. I have been this way for over a year. Over the past year I have been to 13 different doctors trying to figure out what is wrong with me. Most of them were clueless but I finally got on the right track. I have been diagnosed with Atypical Meniere's Disease, Migraine Associated Vertigo, Dysautonomia, Mitral Valve Prolapse, TMJ.
I have been to 3 ENTs in which two of the 3 diagnosed me with Atypical Menieres Disease. I went thru vestibular physical therapy and physical therapy for the TMJ (it itself can cause dizziness) that did not help at all.
One of the ENTs said the passing out feeling wasn't assciated with Meniere's ans sent me to a cardiololgist who then found I have Dysautonomia (and Mitral Valve Prolaspe that causes palpations and is a marker for dysautonomia). Dysautonomia is complex and is described as a glitch in the autonomic nervous system that can be caused by extreme stress, in which is my case. Dysautonomia also causes an off balance sensation as well as dizziness, upper body muscle tension, TMJ, problems with memory/concentration and a whole slew of other symptoms, including anxiety and migraines.  MVP,  Cronic (chronic) Fatigue, Irritable Bowel syndrome, and many other problems are also part of dysautonmia.  I am due to see a neurologist closer to my home in two days, as my passing out feeling is not due to low blood pressure (not specifically cardiac)when I stand up, it is more when I walk. I feel very uncoordinated when I walk and stand
and sometimes feel like the floor underneath my feet is unlevel even though I know it is not-Doctor says this is typical dysautonomia. Maybe you could start with an ENT and have the proper testing for inner ear problems and then maybe see a neurologist and then maybe a cardiologost if you dont get answers. Your symptoms may be associated with a combination of things that hit you all at once. I know how you feel and it is difficult to function. Hope you feel better soon!!!

[zzzzzzzzzz]

Hey Malden, Yes I'm still around - I've often wondered how you're doing - its nice to see you back - you seem alot like me - don't like to leave any stone unturned. Sorry you're not better yet - I know how frustrating it is to be diagnosed with CFS - I was diagnosed with it about 15 years ago when it was called ME - I always felt it was a cop-out on the part of the medical profession - a nice little box they can toss you into when nothing else fits. Still - you learn alot from it - it canged my life in many ways that I'm thankful for - I was rushing headlong through life with no peripheral vision (not clinically - just a figure of speach) and I was forced to stop and look around. I like to think we're given these challanges for a reason - at least it helps to think that way.
Anyway - sounds like you've empowered yourself with knowlege - good for you - you sound in a lot better space than you were in spite of things - is that so?
As for me, things have been kind of weird - I got diagnosed with possible complicated migraines by the Neuro - who I paid alot of money to see (love that NHS) and while some symptoms have improved, others have gotten worse. I have been seeing an osteopath who insists all my problems have been caused by a problem in my Atlas joint - where the spine meets the skull. I had some definate improvement for a few weeks - he seems to have gotten rid of most of my mid thorasic pain, which he said comes from my neck also. You may want to look into this possibility - I can't say for sure if its going to cure the problem yet, but theres a glimmer of hope there. I still have eye problems, fatigue, head pressure, virtigo, buzzing toes , occasional tinnitus, among other things. Recently, I have had a flare up which upset me as I had felt alot better. I went to see the neuro and he said symptoms more consistant with MS than migraine, had an eye problem that is a strong indicater for MS, so I'm off for an MRI on a much better scanner in another city - luckily, by paying to see the neuro the first time, I brought my way into the NHS system to see him free - shocking really, but had to be done. So now I really don't know who to have faith in - the Neuro, or the Osteo - Certainly the Neuro is much nicer and better looking, but I'd like him to be wrong. guess I'll stick with both and see what happens. Have to go now, Good luck to you and hope you'll visit from time to time.

[malden]

HI ZZZZZZZZ. Good to hear from you. I agree with you when you say CFS/ME is just a "lazy" diagnosis given when doctors do not really want to dig into the problem at hand. Concerning your eye problem I think you are refering to Nystagmus (you mentioned it in one of your old posting). I actually wonder if that is what I have with my eyes. I have problems tracking moving objects with both eyes.It can be difficult to watch TV sometimes as the images seem to vibrate/blur. Weird!!! I have had my eyes looked at several times and they always say its fine.I personally think it may be a balance problem rather than a visual one. Maybe I need to see someone specialised like a neuro opthalmologist. Can you describe how your Nystagmus affects your vision? Do you use anything for it like glasses? I have read quite a bit about MS since my problems began and your symptoms pattern don't quite match most typical cases. Things like neuro syphilis for example can cause Nystagmus as well.From the number of undiagnosed cases I have seen it seems like there are loads of people around with "un-named disorders of the CNS. Anyway keep digging we will all find our answers one day. Lets hope its something we can all live with.

[zzzzzzzzzz]

Hi Malden, No I'm not strictly talking about Nystagmus, although that is part of the problem I guess. I'm talking about Bilateral Interneuclear Opthalmoplegia (BINO). This is a problem in the eye mscles that cause weekness and an inability of the eyes to work together. Causes tracking problems and diploplia, but other things can cause that too. When I first had this illness, the hospital physician said he cauld see the nerve damage through the opthalmoscope and dx BINO. There were plenty of other clinical indicaters that pointed to it to. Also had possitive babinski sign & hyperreflexia. Then they did the MRI a moth later and it did'nt show up, so he changed dx. My eyes were shaking uncontrollably in the Scanner, so always wondered if images blurred.
Anyway, for a few weeks I could not drive, watch TV, read a book etc as movement was intollerable for my eyes - went to optometrist who said left eye was turning inward slightly (had tested them a month prior before symptoms and found no problem)and gave me glasses with a prism which made a huge difference. I have to wear them all the time. Had another attack a month later & optition said left eye turning in more, but did not cange prescription as one can get dependant on them. Ever since then I have found that my eyes involluntariliy turn inwards to the point where its very uncomforable, when I close them to go to sleep - this varies in severity, but 3 weeks ago, I had an episode where it was impossible to sleep as the pain around eyes when they moved was unbearable. Wanted to go to A&E, but didn't dare move. The pain reduced so I was able to sleep the next day, but did not go away until this week.  Saw Neuro last week and he said sounds like BINO, that our MRI in this town (where previous scan was done) is not that good, and so he wants me to be scanned on their better MRI. From what I've read 95% of BINO cases are MS and my symptoms don't fit the other causes.Osteo says maybe neck caused it, but I have'nt found anything to support his theory yet. I know about neuro syphillus - I'm told I don't have it. Anyway, we'll see - I know I've probably gone into more detail than is neccessary here, but I've just realised that what I'm trying to get across, is that although my attitude is generally very possitive, and I still go to work most of the time, I am not doing OK here. I remember you said something once that I hear so often - if you're still working and are cheerful, you can't be that bad. When I look back on that time I don't know how I functioned at all really. Yes I went to work - as an artist in my studio where I virtually crawled up the stairs and sat on the couch most of the time, but being there was better for my head than being in bed would have been, and I employ an assistant and she depends on my giving her work and paying her, so I had to do it, and thank god I did. Every morning I had to get my 6 yr old daughter to the bus stop for school - there were times when I just couldn't, but also found it was amazing what you can do when you just have to. once I had accomplished that up and dressed, I figured I may as well keep trying. I found ways to get things done - couldn't hang out the clothes because I kept dropping every peg - this was because they were not actually where I saw they were, so I relyed on feeling for them with my eye closed - took a long time to do, but it got done. I was proud of that, but I find lately, as its become alot harder in some ways, that I'm tired of the "but you look so good, and you're still working" attitude. If I had stayed in bed, people would have said - oh she's very ill - needs our help. But because I'm a coper, I don't get it. I got turned down for the invallids benefit recently, because I was 'coping' That benefit gives you access to alot of things I need, so I had to swallow all my pride and tell the assessing doc all the facts behind how it looked - it was an awful experience, but he gave it to me in the end. I know all this is my own fault really, and that I've got to be more up front with people about how it really is, but I want my self esteem too.
Anyway, that was far more than you asked for, but I'm not deleting it after all that work, so if you're still reading, congratulations, your eyes can't be that bad hahaha.

[loosingit]

Hey Adam,

I was shocked when I read your post.  You described my case to every detail.  I too was 29 and even have the slightly elevated alt levels.  I hate to tell you this but mine started Christmas day 2004.  The first 6 months I thought I was going to die, today I am much better the recovery is the slowest process I have ever seen.  I have returned to work and only have short spells with those symptoms, I put a bed in my office.  I still get sick but it lasts only a few days and I can function while they are occuring.

I've decided my doc is not going to help me.  I think if you don't have the normal sicknesses most docs don't know what to do.  

I was the healthiest person you would ever meet.  I ran 3 times a week and weight trained 3 times a week.  I never had any health problems.  I want my life back.  If you find out what is wrong with you, please let me know.

I liked the post from the MD about the viral infection.  The back of my neck, head and shoulders hurt badly every time I have a flare up.  I had a CT of my sinus and the results were "thickend mucus".  When I have a flare up my head stops up.

Glad to know I'm not the only one going through this, again let me know what happens to you.

Dustin
***@****

[curious14]

I have a cousin who has had some issues lately.  Last year, she was sitting in front of her computer and all of a sudden her muscles would tense up and she could hardly move at all.  She went to the doctors, but they could not find anything wrong with her.  Just last week,  she had another occurance of the same sort.  These occurances would not last very long but the second one made her fall down to the floor.  SHe clenched her teeth so hard that her tooth even chipped off a bit.  I am a bit concerned and do not know exactly what to think of this matter.  Could anyone help me out?  Or at least have any suggestions?? Thank you

[Petite PJ]

I had the exact same symptoms you are describing!!!

I also had the room spinning, lightheaded spells, headaches, migraines, always tired, digestive issues, I couldn't eat for 3 months, forgetfulness, all tests came back negative. They should have done and MRI earlier, but even with that that too would have been negative. The echo showed a small blockage but wasn't enough for them to have concerns.

It was sudden one morning I stumbled and lost my ability to walk for 4 days and talk for hours, I'm 43 and don't fit into ANY of the high risk categories! I'm one of the lucky few, with a few exceptions I'm back to 100%!

After the fact they had every type of test ordered and still after the fact, the tests still come back negative, they do know that there was a small blockage but also have a PFO which they are not convinced that is what caused the stroke.

On occassions in the past 6 months, I still keep going lightheaded, room spins/dizzy and lost my balance twice since put arms up to stay balanced, headaches, flu like symptoms, legs feel like they are being squeezed, they also think it's bouts of low blood pressure and they definately know it's some kind of autonomic disorder. They are going to be doing a  biopsy for my nerve damage on my feet (pre-existing 4 years now) thats been a minor issue and is under control. Thats another topic for another day.

GO TO A SPECIALIST UNTIL SOMEONE HEARS YOU AND DOES SOMETHING about it! I'm very fortunate, I'm have the best medical team in the best hospital in the country for having these types of issues, rated in the top 2 in the country.

I would suggest anybody that has numbing, forgetfulness, balance issues, ANYTHING that is very specific to the right or left side... go in and don't take no for an answer, ask for an MRI! Ask for details, don't let them brush you off!

EVERYBODY HAS DIFFERENT warning signs, I don't fit into ANY of the risk categories! It was too late by the time I had the stroke, but at the time, my stroke felt like the the pressure of a blood pressure cuff and tingling of when your arm goes to sleep, from head to toe down the entire one side, it was like as if a line was drawn down the center (right side/left side of forehead, nose, mouth chin torso. Like a blanket went over me... it lasted for 10-20 seconds, It was bizarre!

I had a mini occasions and warning signs, numb leg, couldn't lift it one morning for several days, headaches, dizzy, all of the things you have listed above. DON'T LET THEM BLOW YOU OFF! TAKE THE WARNING SIGNS SERIOUSLY!

I have the best medical team in the area but also know that I'm a mystery case.