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concernedcass

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Hi. I would like to give you a history of what I have experienced over the past year and 2 months. (previously healthy, no medical conditions what so ever)
April 22 2012. I went to emerg because I was experiencing dizziness and my upper arms and upper legs were tingling. Multiple tests were done including blood work, ct scan, ekg for my heart, all of which came back normal. I was sent home with a diagnoses of anxiety. OK I could live with that. A couple weeks later, I went to emerg again because the right side of my body (from my face, to my arm, to my leg) went tingly and slightly numb. I thought I was having a stroke. This doctor referred me for an mri, to rule out ms. My family dr said in her opinion the mri was normal (there was one unremarkable spot) nothing of which would cause any of my symtoms. Again, they said stress was the probably cause. Over the next few weeks I experienced extreme weakness in my arms, mostly my right. I also had a lot of pain and a feeling of pressure in the back of my head and neck. I had a lot of headaches. May 2012, I continued these feelings of slight numbness in my face, felt lightheaded and dizzy all the time. June I started having difficulty swallowing and shortness of breath. I even had joint pain at which I was again sent for bloodwork to test for lyme disease and other deficiencies all of which came back normal. June 14 2012, I had chest pain, difficulty swallowing, my tongue felt weird and weak. When I would try and sleep I would wake up and it felt like I forgot how to swallow and had to force myself. In July I saw a chiropractor, I got xrays which showed cervical kyphosis (reverse of natural c curvature in neck)So we thought this could be the source of all my problems. Eventually my tingling went away, but I would still have weakness, arms, legs, mostly my right side of my body. My tongue, throat. Its been almost a year since regular chiro adjustments and I still have weakness. Feb of this year I was having shortness of breath, and the right side of my body felt weak and droopy. I even thought my eye and mouth looked droopy. This continued over the next couple months. I have been very anxious about what could be wrong with me. Currently I am experiencing weakness in my tongue and I find it hard to swallow. I feel like I am slurring my words even though no one has said anything to me. My hands and legs still feel weak (but I can still run, like I just ran 4 km yesterday) My hands feel weak, and sometimes hard to open. So tell me does this sound at all like ALS? Or MS or Fibro or Anxiety? I appreciate all your inputs!
 

concernedcass

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One thing that makes me not think Fibro is that I'm not in chronic muscle pain, I have some muscle aches on and off and joint pain, some stiffness.
 

concernedcass

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Would any of those suffering with Fibro be able to tell me if any of my symptoms match up to this illness? I read that it could be an achy pain? Which I have had on and off. I just don't know if it has to be severe? Because I don't find that I am in extreme pain like many of you describe. I have more neurological symptoms. Any inputs would be appreciated :)
 

fibrogal

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Hi....I'm new to the site, this being my first day. I can tell how concerned you are, but my personal opinion (not a health professional) is that it doesn't sound like fibro. Have you been to a neurologist? That's the specialist that I would recommend you see, as it sounds neurological in nature. I hope you'll soon find out what's going on, and let us know, ok?
 

1sweed

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Hi there, While some of your symptoms could be fibro, I also think you need to see a neurologist. These sound like symptoms like MS. Bloodwork does not prove anything in MS, except to rule out other causes. You need more testing like a spinal tap and MRI's. This also could be leading up to a stroke. I am not saying this is what you have as I went through many similar symptoms before diagnosis of fibro, as my old family doctor still believes I have MS. While going to the ER can help in a emergency, those doctors do not have the ability to diagnosis serious illness. Go see a neurologist first. Then if all checks out see a heart specialist, and finally a rheumatologist. That way you have covered the most likely causes of your illness. I wish you the best of luck in your quest to find answers.
Be willing to wait for answers, because having tests and waiting for results can drag out for long periods of time. But if you find good caring doctors they will work hard to find out what is wrong. Be sure to keep good records of your symptoms and get pictures of your face when your experiencing changes that trouble you. Share these concerns with a good friend who can relate the differences in your appearance when an attack is happening. This gives you more proof if the doctors do not believe you,
Let us know how you make out. Okay! :)
 

concernedcass

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I have been to a neurologist and I have had MRI of brain and neck both of which came back clear. So they ruled out MS. I have had all the blood work. I have been tested for Lyme. All of which came back normal. That's why I'm looking at other options such us Fibro.
 

1sweed

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Then your next visit might be the rheumatologist, because it is a neurologist that would diagnosis MS or ALS. As I have said before in many posts, fibro can be tricky it minics things and symptoms of serious illnesses, like for example costochondritis. This is inflamation in the muscles and lining of your chest wall. It is very painful and so it can make breathing difficult to the point you might think your having a heart attack, but your not. I spend lots of time in ER with that one thinking it was my heart, but learning it was inflamation.

It can affect your vision in causing sight to be blurry or you see colors like total whiteness, or lose sight in one eye for a few minutes. It can cause you to walk with one foot dragging or feel odd sensations like numbness or tingling, with weakness. It can cause the brain fog where you can not think clearly. It can cause weak muscles and your legs and arms do not work right. This is all due to inflamation in the muscles.

So if you have been cleared by the neurologist then move on to the rheumatologist and see if he can find a answer. Even if it is not fibro, you are welcome to stay and read through the pages in hope you find some coping skills to make your life easier. :)
 

concernedcass

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Ok thank you. I will mention this to my family dr. I have been tested for inflammation I believe through blood tests. So no arthritis or anything like that, cause I was having joint pains when this all started along with aches all over. The pain being excruciating in my neck, from like the base of my head to my upper back. Chiro has helped relieve this along with the bad headaches I was getting frequently. So I now just have weakness in my arms and hands. My tongue feels tight and I feel like its a chore to talk bc I am trying not to trip over my words. I don't know what is wrong with me. Hopefully my neurologist has some answers next month.
 

1sweed

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I wanted to mention really quick that the inflamation of fibro, does not show up in bloodwork. If it does it is recorded as a very small amount. That is why some doctors say there is no inflamation. But pain has to have a reason and just think if you twisted an ankle, you would have pain and swelling with some inflamed tissue, but it would not record in bloodwork. That is why when everything checks out normal they then consider fibro. :)
 

concernedcass

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Lyme tests are highly inaccurate. Get tested by llmd.

Hi cherry jelly. What is llmd? I had only one blood test for Lyme, I am concerned that they aren't very accurate as well, I have heard this. How do I go about getting tested by llmd? I live in Canada.
 

Cheran

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Hello! I am new here too! And had to say, this sounds like my symptoms too, with not much variation except for chronic pain added. Neuro can support fibro right now but has seen this scenario be diagnosed as ms later, or continue as fibro, or disappear entirely! She says time will tell. What works managing the symptoms seems to vary, trial and error. Hearing others stories is relieving my concern for my sanity, so thank you for sharing!
 

JULLYNN70

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I am new here also..was just officially diagnosed with FM a few months ago but started getting sick in Dec 2009. Like most of us I had every test my neurologist could think of before I got this diagnosis. The reason I am responding is because your symptoms sound very similar to what my father experiences with MG (myastenia gravis). Did your neurologist check for that? Specifically the swallowing issues and drooping face muscles are symptoms.
 

concernedcass

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Hello! I am new here too! And had to say, this sounds like my symptoms too, with not much variation except for chronic pain added. Neuro can support fibro right now but has seen this scenario be diagnosed as ms later, or continue as fibro, or disappear entirely! She says time will tell. What works managing the symptoms seems to vary, trial and error. Hearing others stories is relieving my concern for my sanity, so thank you for sharing!

Thank you for replying. So you currently have no diagnosis? Fibro can turn into ms? Have you had MRI? I have had MRI of brain and neck, all clear. I have been told by a few doctors that its severe anxiety. I don't think I have Fibro because I am not in constant pain.

I'm not sure if MRI of brain was maybe done too soon. Maybe MS will show up later? I have been having symptoms for about a yr and a half now, not really getting worse but some symptoms have gone completely while others are still there and always changing.

JULLYNN70,

I have not been tested for MG. But I have done research and I don't feel I fit the symptoms. At one point I thought I might have it. But my symptoms don't really get worse with excercise or use of muscles. Just kind of always there. I have been feeling much better as to the weakness. Also my tongue symptoms are gone for now, just throat swallowing sometimes feels tight and as if something is kinda closing my throat.

Does your Dad deal with his symptoms well?
 

1sweed

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I just wanted to mention many doctor's don't even consider Myasternia Gravis, so you might want to be checked for that. I had a friend in Florida, that had been diagnosised with MG in Texas, but when she moved to Fl., the doctors would not even treat her for it and cut off her meds. She had to go back to Texas, and get all her records and get a supply of meds to give her time to find a new doctor. Some thought she had MS, by her symptoms, but it was MG.
The doctors in Fl, told her it was all in her head and just anxiety. She almost died a few times with no meds because of her weak muscles and breathing problems.
This would require a neurologist because they diagnosis muscle related diseases. Not to say you have that but it should be checked into, as so many diseases in early stages minic each other. Good Luck! :)
 
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