Dysphagia, weakness, fatigue... But a diagnosis is beyond reach

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Hi all. I'm new to the community but I have lurked on many forums in the past. I'm looking for advice, support... Pretty much anything. So here goes. Bear with me, as I'm rather wordy.

A few months ago, I noticed I was having difficulty swallowing. It had been going on for some time, but I thought it had to do with chewing, smaller bites, etc. When I realized it was true dysphagia, I made an appointment to see a neurologist--I had had an endoscopy (after the dysphagia began) that revealed a pristine esophagus and nothing but a little gastritis. It was the act of swallowing that was difficult, as if my throat and tongue have gotten weak. Even small bites won't go down in their entirety. Since this began, I've slowly been eating less and less, to the point where some days I don't eat at all. I'm now at a very dangerously low weight and will be having an NG tube placed in the next few weeks.

The other two big symptoms: fatigue and weakness, unrelated to food consumption/weight. I have never felt such fatigue and muscle weakness in my life. Sitting at work is an enormous challenge. Things that used to be no problem are extremely daunting... You know the drill.

So, the neurologist. He ran through the typical neuro exam. I thought my balance was fine, but I fell over during the "tightrope" test. The exam revealed significant weakness on my left side, weakness that I didn't begin to notice in everyday life until the following week or so.

The MRI was normal.

The EMG was normal.

Bloodwork (including ANA panel, blood count, thyroid function, etc) was completely, perfectly normal.

Of course I took to the web with my symptoms, and myasthenia gravis seems like a spot-on fit. I feel much better after rest, and much worse towards the end of the day. I don't have ptosis, but everything else fits so well. But...

AChR test was completely normal.

A few days ago, I had a spinal MRI but haven't received the results yet.

I have no clue where to go from here. I have no idea what else this might be. I know for sure that the symptoms are not psychosomatic, and I know that the symptoms are not caused by my low weight. I don't have very much, if any, pain, other than migraines that are somewhat controlled by medication.

I know that a lot of people suggest staying away from Google and symptom checkers, but for me, I lose hope if I don't have an inkling of an idea. I'm becoming less and less functional and more and more desperate.

Has anyone else experienced anything like this? Does anyone have any ideas?

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9 Replies

  • Posted

    I should add: while my left side is weak, my legs in general have gotten weaker and weaker, and the onset of the fatigue and weakness used to begin between 10 and 11am like clockwork, but it's gotten to the point where my legs feel like jelly at 8am.
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  • Posted

    I have no idea what your symptoms mean but don't stop looking until the docs find out. I was a difficult case to diagnose, too, and it ended up being several things.  It took me 9 years of suffering to finally get answers.  So, don"t give up and keep researching.  You know your symptoms best and knowledge is power.   I wish I had an answer for you but all I can do is wish you the best on this journey.
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  • Posted

    Unfortunately, I can relate to some of what you are experiencing as back in 2004, it almost killed me at age 50.  I wouldn't jump to conclusions that you are having what I had - it took 2 weeks in the hospital to get it accurately diagnosed, another six weeks in two other hospitals, and another three months of physical therapy.  It was an auto immune response triggered by Lipitor, officially diagnosed as dermatomyositis.  It began as unexplained weakness in my thighs, fatique, then rash and swelling with an onset of other infections as my immune system went awol.  Luckily, I somehow survived and 12 years later only have a raspier voice because of vocal cords striated with scar tissue.  I also could not swallow for months.  Have you by chance been on any statin drug?  If you are experiencing similar symptom, your CPK level would be higher than normal as well.  For me definitive diagnosis was a sample muscle tissue sent to Mayo clinic.  This is a rare disorder especially for caucasian males, but it only takes one guy like me to defy the odds.  Good luck!
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    • Posted

      Mr. Sparta I also have been diagnosed with DERMATOMYOSITIS, just last year, I'm having g a lot of health problems since then, I wanted to ask you about the CPK levels, and also the stating drugs,. Is bad to take prednisone and methotrexate. Sorry I'm asking you this is just I'm trying to figure out more about this desease and how to cope with it.

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  • Posted

    Hi there just seen your posting.

    All I can say is you need a long holiday.

    You must be so stressed out with seeing all these doctors.

     I had throat symptoms which were stress related, and they went away.

    Our bodies go into overdrive when we feel ill.

    The doctors do tests and sometimes come up with NO answers.

    Yet it is more than costly because we want answers.

    Take a break and you will feel so much better.

    Even unwell book a holiday in the sun, and do not be frightened of going.

    I have done this many a time and it helps so very much.

    The doctors can operate and so forth, but they are not majicians.

    They do not always get it right.

    All the best,

    Sandra

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  • Posted

    Ask for a Lumbar Puncture...it is a definitive test for MS....brain lesions do not always present during MRI...but if they take spinal fluid...and you have something they call O-bands...they will take you more seriously.  I know how you feel.
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  • Posted

    I have DERMATOMYOSITIS I'm going through the same, you are going through, my swallowing is a big problem im losing so much weight.

    I feel very weak, my hair is falling down and now I have g problems with my right lung, this disease is driving me crazy.

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  • Posted

    Hate to see people suffering without any answers. We are all humans. Health care should be priority #1. I hope you found the answers you were looking for and are now well. It's really tough, not knowing.

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