Am I a giant popcorn machine?
I know the above sounds funny, but it really sums up how I have been feeling as of late with these weird twitches.
I am a 33 year old woman, newly married, work as a project manager in a big firm in Canada. I have undergone tremendous emotional stress for the past few years, to the point of having an emotional breakdown sob sob sob (LOL). Anyway....
Well, shortly after my nervous breakdown March 2008, I noticed I began to have tingling all over my body. Later on the tingling turned to some sort of twitching. I saw my family doctor and pleaded with her to send me to a specialist but she said she thought it was nothing. I ended up having to fly down to South America (where I grew up) to have an MRI done. The MRI returned white matter lesions, very small, non specific. My neurologist down there said he did not think it was MS, that they looked like migraine lesions. He said I was noticeably anxious and put me on paxil.....
8 months later had another MRI here in Canada. Same results, non specific lesions, completely normal results when the neurologists (I have seen two neurologists) tested me (reflexes, strenght etc etc). The latest neurologist at ST Michaels says my lesions look like those of a typical migraine sufferer.... sigh.
I have perfect vision, except that I notice I see a lot of floaters, but my eye doctor said this is because I am near sighted. My cognitive abilities seem okay, I am still strong and can run, but my muscles cramp up and ache. Sometimes I have lower back pain, my right leg feels stiff.
I don't know what else to do. For the past month or so the twitches have increased, but I seem to have stretches of time when this happens, I just feel like I am a big popcorn machine and have little kernels popping randomly inside my body. Sometimes I get eyelid twitches, or tongue twitches or an electrical shock feeling going down my face, neck or legs.
No doctor pays attention to my symptoms. None of my 200 relatives have MS (I come from a huge family) and I spent the first 11 years of my life in Colombia, in a city not far from the equator.... I know this makes the likelyhood of MS lower... BUT...
I just need to vent. It seems I am driving everybody including my spouse crazy, but I am in pain! I look totally normal from the outside, everybody around me thinks I am glowing and look healthy. Even my boss expects me to be as high performance as ever eventhough I have confided in him that I don't feel well.
What is this? MS, BFS, Fybromyalgia? My doctors are treating me like a hyponcondriac, but I know my pain is real.
Thanks in advance for your support
Luisa
Hi Luisa,
I understand your frustration. You've come to the right place to vent.
I have many of the same symptoms that you do. Tremors are what brought me to the doctor. An MRI revealed white matter lesions that don't look to the doctors like MS. I also have twitches in various parts of my body. Some feel like they are deep inside my body. I have double vision when I look to the right. I also suffer from anxiety and depression.
Next week I will have a lumbar puncture in hopes of getting closer to some kind of diagnosis. My neurologist thinks that MS is a low probability, but she can't explain the lesions or symptoms.
I hope things go better for you soon. Feel free to vent.
KJ
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KJ
Friday, September 18, 2009 at 06:36 PM
Good luck and don't feel alone. After my MRI turned up small white matter lesions I was given a CT scan with enhancing dye. The CT scan revealed one active lesion, but this is still not enough to get a clear diagnosis in my case. The doctor said the lesions are normal in size and number for my age (I'm 48), but I also know that some people get a diagnosis without any lesions being visible in an MRI.
I am being treated at the Veterans Administration at no cost and I like my neurologist well enough. Unfortunately I have had so many really bad experiences with other facets of the VA that I'm about to give up on them and use my regular health care insurance from now on. That will let me get a second opinion from another neurologist and hopefully move forward again.
Take care,
KJ
stumped
Monday, October 26, 2009 at 03:30 PM
Hello, just checking in to see how your lumbar puncture went.
As for me, still the same. i have travelled around for work and felt strong enough to do my day to day work & chores, even worked out quite a bit for the past month or so. I have felt a bit in pain for the past week or so, pins and needles and all the works. Anyhow, i have an MRI with contrast in less than two weeks... I am crossing my fingers that everything will be alright, as aside from the twitches, pins and needles and floaters, I am pretty much okay.. I am in good shape, my reflexes are good.... I just can't stand the twitching and the shock sensations... it's driving me insane!
I have faith everything will turn out ok!
Hi stumped,
First, I like your popcorn analogy. It really helps paint a picture of your symptoms. Now, could what you are describing be MS? Maybe, but maybe not.
I think you are doing the right thing seeking answers wherever you can. When your doctor says it is nothing, but you still feel it, it is time for another opinion. Keep trying until you have a name for it -- and that name is not hypochondria. It might be helpful to keep a log of symptoms -- when, where, how long -- attempts to identify it -- MRI, evoked potentials, doctor's response. Your experience as a project manager will come in handy with this.
Until then, vent all you want. Keep us updated on your progress. You will find people, like KJ, who can relate to what you are saying. Good luck.
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Many of your symptoms match mine, the twitching, migrains, floaters, depression and anxiety. I was misdiagnosed for 15 years and finally a dr tested me for lyme disease over a year ago. Lyme disease has a wide range of symptoms that can come and go and is often mistaken for MS. It can also leave lesions on the brain from the bacteria encysting in the brain matter. Please excuse my poorly worded post. I am feeling very foggy and confused tonight and it makes it hard to concentrate. The test you need to have done is a western blot test. There is a better test than can be ran by a lab that tests only for lyme disease but I can't remember the name of the lab. Do a search on lyme disease, there is a wealth of information out there. But be aware that just because the dr may interpert your results as negative this may not be the case, some are not as lyme literate as others and if after reading up on it you suspect you may have it, you may want to find a good lyme dr. Good luck
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Thanks for replying KJ.
I see I am not the only one going throught this sort of thing. It's frustrating, isn't it? It's not like I look forward to having MS or anything of the sort
, but I feel helpless not being able to give this a name and hence helpless to take a course of action.
Like I related, I have seen a total of 3 neurologists and have had 2 MRI's and the overall consensus is that it's not MS. I even looked at my own MRI slides and the lesions are tiny white dots.
The doctors can't really explain the lesions though, they say they are not that unusual and most people have minute white matter lesions.
I have found a good GP and she has booked another MRI for November, this time with Gadolinium. Let's see how that goes.
For the time being, I'm taking 4000 IU's of Vitamin D a day, zinc, B12 supplements and Gingko Biloba.
Let me know how your LP goes, and keep strong!
Luisa