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7 month undiagnosed muscle issues

For the past 7 months I have had gradually worsening muscle weakness and decreased range of motion. In somewhat chronological order: 1. Unable to supinate my arms 2. Unable to lift my arms higher than shoulder level when placed at my sides 3. Jaw stiffness 4. Started to go to leg weakness..feels like I’m walking through water, can’t lift legs off ground when sitting w/ legs out 5 etc… My arms shake when I bend my wrists or when I try to lift my arms out to the point of the decreased range of motion. More shaking is when I flex my angles and also leg shaking when I lay on my stomach and bend my legs at the knees or in the abdominal area when I try to do a sit up.
All of that is definitely annoying, but the major issue is that there is pressure in my muscles and it makes me feel very weak. It takes extra effort to do simple tasks and feels like I’m working out at the gym most times of the day.
I have seen a multitude of specialists..my neuro exams are normal, normal EEG, 2 normal EMG’s in November (third one is pending)..most of the doctors just say they don’t know what is wrong with me, but there is one that is at least trying to figure it out, but I feel like answers may not be likely through that route either. Many things have tested normal including demyelinating thoracic, cervical MRIs, hip xray, CBC, sed rate, electrolytes, hormones, Marfan’s, rheumatoid factors, lead levels, you name it. Any suggestions on where to go from here? I know you can’t have a real idea w/o seeing me, but a new road to take would be beneficial. Thanks for your time.

p.s. I am a pretty happy/healthy with decently controlled hypotension. I am in my first year of medical school and am doing well, but I’m afraid if this gets any worse I may  not be able to perform adequate physical tasks/become too fatigued. I am located in a major city and have seen some top neruo specialists

p.s.s. I have tried physical therapy. could this be a joint/tendon issue? Not sure when to give up on this
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Avatar universal
Just wanted to let you know that i pretty much have your same symptoms. I am still in limboland myself. On my second neurologist and she seems to be doing a better job at trying to figure out whats going on with me. I have had EMG, VER, BAER, Brain MRI and the lastest has been a skin biopsy. Have not heard back on the skin biopsy yet but the others were normal. She has found that my muscle enzymes were slightly elevated all other bloodwork was normal.

I wish you luck. Keep us posted if they find anything for you.
Helpful - 1
Avatar universal
I know what you mean about the docs with bad attitudes! All you want to do is find out what's going on, and they try to treat you like a hypochondriac. I've had the antibodies test (negative), and the EMG which they need to repeat, because I was on a trial of Mestinon at the time. I'm really just hoping that all of this is related to the Vitamin D deficiency and nothing more sinister. Good luck with your appointment at UPenn!
Helpful - 0
Avatar universal
Thanks Michelle,
I've had some things checked, but I don't think Vitamin D. I have been tested for MG though..When i was admitted to a small community hospital, they did the tensilon test, but my neuro said that test was out of date, so she had me get tested for ACh antibodies and do a repetitive stimulation EMG. I don't know if you have tried any of these things. I am seeing a rheumatologist at UPenn on friday. I will ask about the Vitamin D thing. Thanks and good luck! It is so frustrating going from doctor to doctor having them say they have no idea. Some don't come out and say it and some have had bad attitudes. Some have been great. All I ask is that they be honest with me. If they don't know, they shouldn't be afraid to say that. I'm used to it by now haha
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Avatar universal
Hi rugger,

I've been going through something similar for the past 2 years - muscle weakness {arms, legs, shoulders, lower back, hips, hands, jaws}, fatigue, muscle pain/cramping, difficulty walking. I've had numerous tests (they are currently trying to rule out Myasthenia Gravis), and one test that did come back abnormal recently was my Vitamin D levels, which were at 6, and the normal ranges are listed from 25-80, so it turns out that I am  extremely deficient, which would probably explain some of my symptoms.

Just make sure to get your Vitamin D levels check, along with a full vitamin/mineral panel if you haven't already.

Michelle
Helpful - 0
Avatar universal
MEDICAL PROFESSIONAL
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.

Obviously there are many causes of weakness and aches, but in the setting of a normal neurologic examination and normal EMG, and if the blood test CK is normal, a muscle or nerve problem becomes less likely. Neuropathy would lead to abnormal examination and abnormal EMG; small fiber neuropathy would not lead to weakness but could lead to burning and/or aching.

Certain medications, particularly cholesterol medications called statins, can cause muscle cramping and some muscle pains but often the serum CK will be abnormal, as will EMG in some cases.

Non neurologic causes become more likely when the neurologic examination and EMG are normal. Sometimes when joint pains are severe, there is perceived muscle weakness because full muscle activation is simply limited by pain. Fibromyalagia is another medical condition that leads to whole body pains and perhaps perceived weakness. Its cause is unknown, but it is characterized by diffuse aches, sometimes GI symptoms similar to irritable bowel, sleep abnormalities, low pain threshold, and other features. It is best treated with medications such as lyrica and neurontin, exercise, and physical therapy.

Evaluation by a rheuamtologist may be of benefit if there are concerns for joint/bone problems and/or fibromyalgia. Continued follow-up with your physicians is recommended.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
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Avatar universal
I don't mind the question at all. With the skin biopsy they are checking for small fiber neuropathy.
Helpful - 0
Avatar universal
Sorry to hear that you are in a similar situation, but in a way it is good to hear there is someone else out there! keep me posted too! What was wrong with your skin that they needed a biopsy? (if you don't mind the question)

other items i forgot to mention:
-sometimes I have slight arm or leg jerks, but they are extremely slight
-left lateral knee  tingling (feels like someone is dangling thread or a spider web on it)
-rib pain (mostly Left lateral serratus anterior and sternum)
-the pressure mentioned previously isn't a pain, just feels like i'm wearing a lead suit
-no Fam history of these symtoms, no Hx of anxiety
-labs--normal rheumatoid factor, CPK, neg test for MG

would the last answer to come to be fibromyalgia? or is that more of a pain deal? i don't think I've heard of fibro patients with decreased range of motion?


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Avatar universal
i should also mention prior to symptoms I wasn't sick, had no rashes, no injuries, no flu shots, tested negative for lyme disease
Helpful - 0

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