I’m 32 and 9 months ago in February 2013 I started to have dizzy spells which became almost constant. I would describe it as some kind of disequilibrium, a feeling of drunkenness like I had too much alcohol to drink but sober.
In addition, a couple months later in April 2013 I started to have occasional pain in my muscles, legs and/or arms. The muscle pain is very localised in one random spot and can be replicated by stabbing your arm or leg really hard with your finger for example. I don’t know if it’s really pain, maybe more soreness like after an intense workout, weight lifting etc…
In March I was in Europe and I saw an ENT which couldn’t find anything wrong. Then I saw a Neurologist and got an MRI which revealed 4 white matter lesions (See http://i44.tinypic.com/2hdnvrd.jpg).
I returned to Canada in May and since, I’ve been randomly feeling all sorts of other weird symptoms which are mostly temporary and more inconvenient than debilitating. For example I sometimes felt I had trouble breathing like someone had their hand around my throat and were tightening their grip. That would last a couple hours. A couple times every month I’d have this really strong and sharp pain only in my left eye. Also, some minimal tingling in legs + floaters in my eyes + feeling I’m searching for my words (Tip of the tongue phenomenon) + stiffness in my neck + some kind of weird numb feeling at the tip of my left toe.
I sometimes have headaches but not more than before. I don’t believe I’ve ever had vision problems apart from the pain in my left eye, definitely no optic neuritis. I do sometimes need a couple seconds for my vision to focus on a word or close objects (Presbyopia?). I bike 50 minutes every day to go to work and I have plenty of energy. I sleep relatively well BUT I think my symptoms worsen if I don’t get a good 8 hours of sleep.
In Canada, I saw an internist doctor and spent an hour talking about all my symptoms. He says I can’t have Lyme disease because I’ve had no rash, no joint problem, no fever, no flu like symptoms. His conclusion was that I have an anxiety disorder. He says brain lesions are common and might not be the cause for my symptoms.
In September I saw my first Canadian Neurologist who spent an hour questioning and testing me, Babinski sign etc. Nothing abnormal. I got a second MRI with contrast this time. The lesions have not changed in 5 months and nothing alarming to note with the gadolinium. That’s pretty good news!
When I was 20 years old, I often went to raves and after-hour parties and took a couple different drugs. Over a period of 12 months, I must have taken 20 amphetamine pills + 5 ecstasy pills + tried cocaine twice. I know it’s bad, I regret it and would NEVER want my kids to do this! I found a study that shows 0.5% (1 in 200) young adults have brain lesions. That’s a lot! Scientists found a strong correlation between brain white matter hyperintensities (WMH) and amphetamines. I couldn’t believe it when I read this! My lesions could have been caused by drugs and absolutely not related to any demyelinating disease! That’s kind of good news!
I’ve been a heavy smoker for 10 years and quit a year ago. Smoking could cause white matter lesions? Don’t remember if I read this somewhere.
There are two conditions I’d like to get tested for: “chronic subjective dizziness” and “Vertical Heterophoria Syndrome”. In both cases, muscle pain is not part of the symptoms but that could be caused by anxiety which could be caused by one of either condition. It’s amazing to read about all the symptoms anxiety could be responsible for, basically every possible symptom in existence! Only thing is I don’t feel stressed, I have a pretty good and stable life. Can you have an anxiety disorder without feeling anxious?
I got in touch with “Vision Specialists of Michigan” regarding Vertical Heterophoria Syndrome and I have high hopes this is what I could have! My eyes could simply be misaligned and I’d need a new pair of glasses which include correcting prisms. I scored high on their questionnaire and when I have symptoms and cover one of my eyes (so both eyes don’t need to focus), I really do feel the symptoms diminishing. I thought the placebo effect might be responsible but I tried it 3 times and the results are very similar! I’m going to an optometrist to get this tested soon. If I want to see an ophthalmologist, it’ll take 6 months or more in Canada!
I want to get an electronystagmography (ENG) which is a diagnostic test to record involuntary movements of the eye caused by nystagmus. It can diagnose the cause of dizziness by testing the vestibular system. This could truly help diagnose my main symptom which is dizziness. I need a referral from an ENT.
For some, migraines cause pretty nasty symptoms and can also cause lesions. I don’t really have headaches but there are “silent migraines” so that’s also a possibility.
Lyme disease might be the “better” disease to have as it’s curable with antibiotics and can cause all my symptoms.
I’ve been thinking about Multiple Sclerosis quite a bit which could be responsible. Do I have an autoimmune neurologic disorder? I hope not!
Last on my list of possible diagnostic is anxiety which could be the cause to all my misery.
With all these possible diseases and conditions, a healthy lifestyle is always highly recommended. Two months ago I started biking to work (11km a day). I’m starting yoga in 2 weeks. I’m trying to eat healthier and reduce inflammatory foods like red meat, etc…
Some days I feel totally fine (35% of the time) and I never forget to thank my own personal god for a symptom free day. When I feel like crap, I repeat a couple times a day “Please allow my family and I to be healthy…” My mom has lung cancer so she could really use some good voodoo. I’m not religious at all but feeling like someone is watching and listening feels good.
Questions – I’d greatly appreciate your opinions on any of the following:
- What does the muscle pain feel like for Multiple Sclerosis? Soreness like you just did some major exercising? How would you describe MS muscle pain?
- Even though I’ve never had a rash, no joint problem, no fever, no flu like symptoms, could I still have Lyme Disease?
- Can you have an anxiety disorder without feeling anxious?
- Only active lesions that stand out in MRI with contrast can be responsible for symptoms for MS?
- Have you ever tried the electronystagmography (ENG) test?
- Have you ever heard of Vertical Heterophoria? Do you know anyone that’s required prisms to fix an eye misalignment?
Thanks to all! It feels good to be able to talk about it!
http://orbisvitae.com/ubbthreads/ubbthr ... m5yeowo7IU
I don't have the knowledge to answer any of your other questions. MS can be mild. Hang in there.
In my opinion you have Lyme, Babesia and Bartonella. Lyme is the most controversial medical issue in history and the CDC just admitted there are over 300,000 a year , an estimate that increased 10 X what they thought. MOst people get infected with multiple pathogens. It is not just lyme, there are many other infections involved. A negative blood test does not mean you don't have it. Educate yourself on the controversy and join a Lyme Diease support group just as you are joining this group. Google and read Dr. Burrascano's Lyme Disease Guidelines. This is a huge controversy and it takes a long time to get better usually with long term antibiotics in combinations. But you can get better!! You need to find a Lyme Literate doctor (LLMD). Mainstream medicine will ignore these infections and label you with MS. Infections can cause white matter lesions. Being off balance the way you describe is a huge symptom of babesia. Please investigate what I am telling you, with the proper treatment you can get much better!
It can manifest in various ways. Sometimes, MS patients can have muscle spasm/stiffness with pain and others can have neuropathic components like burning, stabbing, or with other characteristics. A type of muscle pain in itself wouldn't be highly suggestive of the diagnosis of MS.alex342 wrote: What does the muscle pain feel like for Multiple Sclerosis? Soreness like you just did some major exercising? How would you describe MS muscle pain?
It's possibleEven though I’ve never had a rash, no joint problem, no fever, no flu like symptoms, could I still have Lyme Disease?
Some people have anxiety disorders manifesting primarily with physical complaints and may not perceive their anxiety to be dysphoric. It is probably reasonable to make sure you don't have another condition before presuming that your symptoms are solely related to anxiety. It seems that your doctors are taking your complaints seriously.Can you have an anxiety disorder without feeling anxious?
As a general rule, new demyelinating lesions in MS will "enhance" with contrast for about 4 weeks. Older lesions usually will not. Old non-enhancing lesions can also cause symptoms.Only active lesions that stand out in MRI with contrast can be responsible for symptoms for MS?
not personallyHave you ever tried the electronystagmography (ENG) test?
Yes. A phoria is a subtle misalignment of the eyes that can be compensated for (usually by central fusion mechanisms-your brain's ability to fuse two different images into one). This is in contrast to a tropea which is an eye misalignment which cannot be compensated for (hence exotropia-wall eyed and esotropea-crosseyed). vertical heterophoria is when one eye naturally looks higher or lower than the other eye. Sometimes, a phoria can breakdown into a tropea when one is ill or fatigued and cause double vision. Generally, people wear prisms to correct tropeas, not phorias.Have you ever heard of Vertical Heterophoria? Do you know anyone that’s required prisms to fix an eye misalignment?
A large number of people will have subtle phorias if carefully tested.
Indeed. Best of luckThanks to all! It feels good to be able to talk about it!
My neuro hasn't said much yet. I'm seeing him again on November 11 to discuss the MRI. I have a feeling he'll just say he doesn't know, need more tests and most importantly to get a new MRI at least once a year to check for any changes in lesions. Obviously if I start having new symptoms then I should get an MRI asap to see if new lesions are responsible.
I'm at that point where we can't say MS for sure but it must be suspected. I think I'd rather just know what's happening even if it's bad news so I know what enemy I'm fighting. Dizziness is 80% of my symptoms and I haven't had any other major problems. If it was MS, wouldn't I have other troublesome symptoms?
I started reading about MAV (Migraine-Associated Vertigo) which I've added to my list of potential causes. I don't really have vertigo (nothing is spinning) but migraines should be considered. I only have a handful of headaches per month and they are not bad but migraines could be silent. I think Advil helps with my dizziness but it could just be my mind playing tricks on me.
According to an article by dailymail, "Migraine-associated vertigo is surprisingly common; it’s one of the most common causes of vertigo and an estimated one per cent of the population is affected". Really!!!
I was hoping to have a phoria (heterophoria), that my vision was misaligned, but according to the optometrist I saw a couple days ago, that's not it, my eyes are healthy. He couldn't explain the floaters I'm seeing either. Everyone has them, it's no biggy according to him. I have tinnitus for the last 3 years so it's just another thing I must get used to. I really need to start those yoga classes I've been mentioning!
I think the muscle pain only appears when I am dizzy. My muscles are tense a lot of the time and I need to think to relax my muscles otherwise they tense up. I guess they are in "alert mode" which might be causing the muscle pain.
I did start a diary of my symptoms trying to associate them with an event but the symptoms are really random. No logic whatsoever.
My lesions are not really close to the ventricle? Are they? (See http://i44.tinypic.com/2hdnvrd.jpg). Would you say they are ovoid shapped?
@bartman When I see my neuro, I will insist on getting tested for Lyme. I'm also curious to know what he thinks about it. The Canadian CDC naively believes the ticks stop at the USA border. Very few Canadians are diagnosed with Lyme Disease...
Thanks for the advice!
personally, i would always go for optimizing basic nutrient requirements first, and see what goes away before taking a symptom list to the doc. reading this reminded me that i was recently going through a spell with some vertigo. i'd been lazy with my nutrition for a while. did a few weeks back on track with healthy varied diet and an array of high quality supplements, and no issues whatever now. my previous 'vision' issues (10 yrs ago) had to do with processing trouble in my brain, and it cleared up when i tested for and corrected zinc deficiency. i also lived much of my life with anxiety until i accidentally worsened an underlying magnesium issue. when a pharmacist got me back on track with magnesium (this is a bit over 10 yrs ago now), lifelong 'normal' life stuff disappeared, including a baseline anxiety level so pervasive i hadn't realized how much it affected me daily. it's really weird realizing 'hey, i've been deficient in *insert whatever* my whole life!' until you read a bit of public health literature and realize how many of us are wayyyy off track on a variety of basic day to day essential nutrient needs. it's a huge pain that regular medicine and public health aren't better aligned. until blood work does a better job of red flagging specifics for people, it kind of lands on our plate (did not originally intend that pun but now am keeping it) to do the math linking our day to day diet and lifestyle, to fundamental needs.
take control of your own health.
pursue optimal self care, with or without a diagnosis.
I still have occasional dizziness a couple times a week but not so strong (2/10). They've never been incapacitating. I have tinnitus since 2010 and lately, the volume of the buzzing has increased (5/10). Really fucking annoying!Alienfishfrog wrote:Any updates? I have almost identical symptoms...
So I have a few brain lesions but they seem stable. I did not go for an MRI checkup since August 2014. My VEP in 2014 was abnormal, 156ms which is quite slow. My lumbar puncture in 2014 was normal. I have floaters in my vision. I have slight carpal tunnel in both hands. A slight scoliosis in my spine. I still consider myself healthy since I don't have major symptoms. I'm 36 by the way.
I bike to work every day and my energy level is quite high. I'm staying healthy.
I'm thankful everyday that I'm healthy and without symptoms!
Alienfishfrog, did you get an MRI?
I think we need to back this up a bit.
There is only one sensible way to look at any issue and that is to be fact based. Putting symptoms in boxes that sound right won't help you solve this.
You need to be objectively tested. Often doctors pull up short on answers because they are only guessing.
By all means test for Lyme, bartonella and babesia but also test for mycoplasma, chlamydia and rickettsia. Also test for EBV. In that instance a positive result for an old infection would interest a researcher, may interest a neurologist and won't interest a GP . Check your vitamin levels but if you want to be serious check your fasting amino acid levels as well, as that is where the intersection of infection and nutrition will show up. Also check your uric acid level as that will tell a lot about your metabolism if it is awry.
Your spine is probably more important to MRI than your brain. See if it shows demyelination in the cervical spine or below T5 in the thoracic in particular.
Check your blood pressure when you feel unwell. What does it show? Contemplate having it tested on a tilt table.
Stand in front of a mirror and look at your posture. Are your hips aligned are your shoulders hunched up around your ears or are they relaxed? Is your back straight or curved? All those things can affect your legs in terms of pain and cramps irrespective of "so called" fitness.
Have a good look at what is really healthy in a diet. There are many zealots about many diets that are often diametrically opposed but have similar results. However, I am yet to see one that favours added sugar so maybe avoid that. Gluten is a known inflammatory trigger and I find benefit giving that a miss.
Whatever your problem is you need to ground your ideas in fact. It is rare that any issue exactly fits a textbook example in real life. You need to look and collate the results so you can work out what is appropriate for you. We have all done what you are doing but it doesn't impress your doctors. If you want to make a difference use people who will thoroughly test and don't rely on those that guess. If you keep reading and learning that is good but don't guess.
If I was you, I would do all the tests I have mentioned and look at where your hips are aligned.
I'm in Canada and my neurologist got me to do pretty much all tests that I should require, and those haven't been enough to get a diagnostic or figure out what is going on. So now I'm just listening to my body in case something does happen. At least I'm informed and have a neurologist that can see me quickly if necessary.
As I mentioned, I'm staying healthy, positive and thankful that I'm doing well. Attitude is soooooo important! Gotta stay STRONG!
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