Symptoms for Over a Year

Edited , 5 users are following.

Hi there,

My name is Rachel. I will try to be as detailed as possible about the issues I am facing.

A little bit about my medical history:

I am a 31 year old woman.

I do not smoke, or do recreational drugs. I occasionally have a beer or two, but I am not a heavy drinker.

I do not have diabetes, or a thyroid condition.

I do not have any forms of cancer.

I am not pregnant (I have an IUD) and I do not have children.

I was diagnosed with Long QT Syndrome last March and I now take beta-blockers (Metoprolol 25mg x2 daily) to control my heart rate. The cardiologists were not able to determine the cause of my arrhythmia, as it does not run in my family.

in my twenties, I suffered from depression and anxiety, but I currently do not experience any issues with mental illness.

the only medication I am on is Metoprolol for my arrhythmia

Since last summer, a few months after being diagnosed with my heart condition, I began experiencing strange symptoms. Please see the following:

Last summer I began to have problems with my vision, to the point where I went back to my eye doctor less than a year after seeing them. They were unable to find any issues with my eyeballs themselves, or any notable issues with my vision. I purchased new glasses, hoping this would correct the issue, and this has had no effect.

I began to have intense pressure in my left eye. Numbness sometimes follows the pressure, notably around my mouth and jaw. This now occurs daily.

I see white flashing light in the corner of my right eye on a daily basis, and sometimes in my left eye. Again, I have had several eye exams completed and they found nothing wrong with my eyes.

On a daily basis, I experience travelling/burning pain in my arms and legs. I have never experienced pain like this before. The pain itself is not severe, but it is noticeable when it occurs. It is more noticeable when I am at rest, not when I am moving around.

My left arm (from my shoulder down to and including my hand) involuntarily twitches, spasms and tremors. This will sometimes happen on the right side, but it is mostly in the left arm. I do not have any prior injuries on that side of my body and the tremors are most noticeable when I am at rest.

I also occasionally experience tremors in my feet and legs, but not as often as my arm.

At times, the tremors will also occur in my face and jaw.

Numbness will occur in my face on a daily basis, lasts for several minutes and then fades away.

I suffer from sudden and extreme bouts of fatigue, regardless of the time of day, what activities I am doing, or what I have eaten. At times, the fatigue is very difficult to manage.

The steps I have already taken:

I have a previous history of depression and anxiety, but my mental health has been healthy for the last four years. I recently went to my former psychiatrist to rule out a panic/anxiety disorder and after several visits with him, he agreed with me that he does not feel these symptoms stem from mental illness.

my psychiatrist ordered an EEG to rule out seizure disorders and the results came back negative

I had a CAT scan (non-dye) completed at my local hospital which also came back negative for anything abnormal

I have an MRI scheduled for the end of June (this month)

I've had to really push my GP to get a referral to a neurologist, as they were convinced my symptoms were the result of anxiety. I now have a neurologist, and she has ordered an MRI but she does not seem overly concerned by my symptoms either. I am concerned this will not be treated seriously.

I want to be clear that I am not seeking a specific diagnosis. These symptoms are not going away, in fact, they are progressively getting worse. I just want to know what's going on. I hope someone can help me get to the bottom of this.

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4 Replies

  • Posted

    When you see your Neurologist, ask about Cerebellar Ataxia (shrinking of the cerebellum). Your symptoms sound very similar to my sister's. It took years, and changing Neurologists several times before she found a Neurologist in Boston who diagnosed her. An MRI will show this, although many doctors missed it because it's rare and not a lot is known of this disease. I hope you don't have this, as there is no cure. She also had Vertigo with her symptoms.

    Good luck. I hope you find an answer.

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  • Edited

    Your Neuro will run some more tests possibly to be sure they can rule out MS or any other neuro disorder. They will test your antinuclear antibodies for lupus, etc. I would also probably maybe see an endocrine doc also to make sure your metabolic and or hormones are ok as well.

    Sometimes people confuse tremors with twitching. Tremors are something a parkinsons patient would show some sort of resting tremor. Like a Parkinsons patients fingers may look as if they are rolling a pill constantly at rest. A twitch is also called a fasiculation. You can see and usually feel these twitches. A spasm is involuntary contraction of a muscle. A myclonic jerk, people get when youre like almost sleep and your muscles are poorly relaxed, your leg or arm may involuntarily move or jump as were falling asleep everyone gets that. So you have all 3? Also anxiety does cause physical symptoms but i would never say thats whats causing our issues only we know our own bodies. I would say seeing the neuro youre going in the right direction.

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  • Posted

    good morning! i have been experiencing a lot of the same for well over a year and a half. ive been working with a neurologist for 6 months and have done all the same tests and sleep studies etc. i also additionally have cognitive disfunction, diziness and some other things. i actually have a lumbar puncture today, my MRI's have been somewhat normal with a couple spots but kind of the same thing kind of shrugged off. a lot of these symptoms are symtoms of MS. it is important a neurologist rules this out which is why my lumbar punture today is very important. these symtoms numbness etc can also be the result of other anti inflamatory diseases as well. the most frustrating part is not having an answer. ive had no quality of life and im sure you feel the same. definitly do the MRI, if it comes back Normal then definitly keep pushing to see a neurologist so they can run additional tests. its like being a detective. they need to see you so you can express what you are feeling and then run all these tests to start ruling things out. always be your own advocate! and im sorry you are going

    through this.

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  • Posted

    first off, sorry for all the problems your have. secondly, please don't just stop and give up before someone figuring it out. worse case get a different doctor. this doesn't seem as if it's going away on its own. im glad you are seeing a neurologist. To me it sounds like something to do with nerves.

    also quick question, when you have spoken to your eye doctor, have you told them everything else your experiencing? i read a story a few years back that an optometrist had a patient who was having a look of other issues that didn't seem to do with anything the eyes at all in everyone else's opinion but apparently it was some kind of disorder assocuated with how eyes. If you just saw an eye doctor at a little shop in the mallv it Walmart. that's not the eye doctor i mean. you need to see the one that has more degrees. they know and learn allot more about how your eyes can affect your entire body.

    hopefully you figure it out. it sounds as if your miserable. good luck and don't give up the answer is out there. it could be something so simple that connects your eye issue with the rest. the reason u think it's a nerve issue is because how you described the pressure in your eye and then had numbness in your mouth and jaw. the 2 are definitely connected somehow with the rest of your numbness, twitching, spasms and pain I'm almost certain have to do with nerve issues. i really hope your doctors can figure it out soon. good

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