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  • I need help finding some hope ...

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    Old 12-21-2015, 10:40 AM   #1
    gstri's Avatar
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    Unhappy I need help finding some hope ...

    Hello all

    I recently saw my neurologist and she doesn't think my symptoms are related to a neuromuscular disease because all of the diagnostic tests have come back negative, except for the EMG.

    Since I was 14, I have had pain in my calves while walking; sometimes even short distances. I never paid much attention to it because it would come and go, and only happened in the morning when I would walk to school. If I could described the pain, it feels like someone is inflating a balloon in my muscle. Tightness, pressure; from the inside to the outside. Cramping.

    As I have aged, the pain became more frequent and painful. It has even been so bad that I couldn't feel my feet, and when I would rest, my feet and calves would be numb and tingly. I just ignored it for a long time.

    When I was in the Army, I was very active and my weight was normal for my height. I still had the pain, especially during marches. I continued to ignore it.

    It was intermittent and would come and go. Sometimes I would go months without an episode, and sometimes I would have a flare up for months. No rhyme or reason.

    When I was 25, I saw a doctor for it. Before, doctors had dismissed it as poor shoes or not enough water intake. This guy thought it was super serious. Not only did I have the pain, but I learned that I had limited range of motion in ankles. According to the measurements, I couldn't dorsiflex my feet even to a 90 degree angle (I was topping out at 83 on my left and 87 on my right). I was unable to walk on my heels, and along with the pain, he was very worried that I had some kind circulatory disorder.

    But after months of angiograms, arterial runoff studies, dopplar readings, and ultrasounds, the found no abnormalities in my circulation. (Though, during one of my ultrasounds, when I would dorsiflex my foot, they were unable to find my blood vessels...). So I was sent to the neurologist (the first time). That was the last time I saw the cardiovascular surgeon.

    This neurologist noted that my ankle reflexes were absent. Not weak; absent. And I had some sensory disturbances in my legs as well. She put me on Gabapentin (it did absolutely nothing) and was certain that I had neuropathy. But when they did the NCS, my nerves were completely fine. So she sent me to an orthopedist, and took me off the gabapentin. That was the last time I saw her.

    The orthopedist was fascinated by my ankles. She said they were like bungee cords; as soon as she would let go, they would snap back to the same position. I was trying to relax. I told her that the pain goes away when I jog, and she noticed that when I jog, my heel never hit the floor. Her diagnosis was Chronic Exertional Compartment Syndrome due to and ankle abnormality. She prescribed Baclofen, and referred me to Physical Medicine and Rehabilitation for Botox injections. That was the last time I saw her.

    In PMR, the botox injections helped a bit. For about six months, I had no symptoms. However, my insurance at the time wouldn't approve any more treatments (I had like 9 vials. Each vial costs like a $1000). So I didn't see him anymore. But I continued to take baclofen and cyclobenzaprine.

    Then, I went on disability. I was falling asleep at work, and was sleeping nearly 17 hours a day. I lost my insurance, and had to make do with what I had until I got new insurance. Going to emergency rooms for my medication refills, and waiting until I finally had a new PCP. He sucked. He would literally see me for 2 minutes before he left. But I got my meds. And he referred me to neurology again.

    This neurologist noted some different things, and did a full blood panel. I didn't have Lyme Disease or heavy metal poisoning. And most of my bloodwork was in normal range. Most. But he did notice some abnormalities in my NCS and my EMG. And again, I had absent ankle reflexes. He sent me for an MRI (WOW, my first MRI!), and it came back pretty messed up:

    Basically, cervical foraminal stenosis due to congenitally undersized canal. Plus, lumbar arthritis, a few areas of stenosis in lumbar, and (possibly the most alarming of all the findings) a very large epidural lipomatosis. VERY large. Like taking up half of my spinal column. But, according to him, that would not cause any of my symptoms. Due to insurance problems, that was the last I saw of him.

    Then in 2013, I went to Vegas for 4 days. It was my first time, so I just pushed through the pain the best I could. Walked as much as I could. The day I returned, my right ankle was so painful that I couldn't even fall asleep. I couldn't walk on it either. I thought I broke it or tore a ligament. And sense I was still under the assumption that I had exertional compartment syndrome, I thought it was due to that. I went to the emergency room, and they took my blood. My CPK was through the roof, and so they admitted me, and I was on dialysis for a WEEK! Rhabdomyolysis. Then, I finally got on Medicare.

    In 2014, I started seeing my current PCP, and I asked to be referred to Physical Therapy to help with my ankles and my back (I started getting the same pain in my hip area. Like the lower back/upper buttocks region, and even down into my thighs). Plus, I had the same pain in my upper back, along with a very annoying shoulder "jerk". When I got PT, they asked me to see a orthopedist and neurologist again. I had been taking the baclofen and cyclobenzaprine for four years now, but it didn't give me much relief.

    I first saw the orthopedist (once). She looked at my MRI and did an exam. At the end of the first visit, she said definitively: I did NOT have exertional compartment syndrome. She took me of baclofen.

    Now, I said that my back, things, and buttocks were all included now too. But it dawned on me that my jaw was involved as well. I had been seeing dentists and such for TMJ - but they kept saying I didn't have TMJ. So I forgot about it. But now it was starting to all make sense. My shoulders, neck, and jaw were involved as well.

    So FINALLY, I see the neurologist. He does an exam and was worried. My foot inversion and eversion were super weak, and he could push my big toe down as if it were a button. Plus, my balance was horrible. No ankle reflexes. He did a NCS and EMG as well, and my EMG came back abnormal suggesting myopathy. I had decrease MUAPs, or something like that. He thought I had muscular dystrophy. Particularly, L-Carnitine deficiencient. So I began taking L-carnitine and Alpha Lipoic Acid supplements per his suggestion. On top of that, i took B-vitamins, D-vitamins, Fish Oil, and a multivitamin. And we started doing so much testing. Genetic testing for everything:

    Stiffman Syndrome, Lupus, Ankylosing Spondylytis, Myotonias, Myasthenia Gravis, Muscular Dystrophies, the list goes on.

    Well, then he moved away, and I got a new neurologist who said that she doesn't think it is neuromuscular in origin because they had tested for them all. She thought it was Cramp Fasciculation Disorder/Neuromyotonia, but that just didn't make sense. I don't have ALS, Parkinsons, Multiple Sclerosis (Though a lot of my symptoms could be explained by MS), Dystonias, I can't think of all the things that have been ruled out. But the weirdest thing is that when she did my physical exam, my ankle reflexes worked. 5 other doctors (2 internists and 3 neurologists) said I had absent (or barely present) ankle reflexes, but here she elicits them. And I see it. Weird.

    I have pain in basically my whole body besides my arms and hands (though my muscles in my forearms and hands are rather tight. When I flex my hands up, I can only go to a 30 degree angle without force), but no one know what is going on.

    She is sending me to pain management tomorrow. I don't know what they are going to be able to do...

    Also... some interesting stuff - the pain doesn't respond to NSAIDS or opiates. Honestly, the only thing that can ease the pain are muscle relaxers...

    Other diagnoses:

    High calcium, high CPK, high Uric Acid, high liver enzymes, low testosterone, high prolactin, low vitamin d, high cholesterol and tryglycerides,

    Mixed Sleep Apnea
    Bipolar 1 DO

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    Old 05-10-2016, 10:42 AM   #2
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    Re: I need help finding some hope ...

    Hi I am so sorry you are dealing with this. It sounds awful. Have you had that tightness and pain in your calves since you were a kid or did it start as an adult? Your muscle issues sound similar to mine. I am undiagnosed as well. My ck rests around 1,100 and my EMG only showed some mild muscle issues in like one area...nothing with nerves.

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    Old 05-29-2016, 04:24 PM   #3
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    Re: I need help finding some hope ...

    Medication reaction? You've got a lot of things going on, some needing long term medication. There is a chance that something could be making the initial thing worse, or that combining a couple things could be making things worse.

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    Old 05-29-2016, 04:56 PM   #4
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    Re: I need help finding some hope ...

    I am just so very sorry that this is happening. I know what it is like to be in constant pain and having no idea why or the cause. Please know there is always hope. I would love to connect with you, so please maybe message me privately?

    I ended up having parathyroid tumors. I had surgery and things are so much better. I suffered from hypercalcemia and was always dehydrated. My kidneys were on overdrive. I HIGHLY recommend seeing an endocrinologist or someone else, if you are already seeing one.

    Also, a homeopath.

    I didn't read your full post, but have you tried cutting out specific foods? Food allergies can manifest in many ways!!!!


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    Old 06-11-2016, 01:19 PM   #5
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    Re: I need help finding some hope ...

    Sorry you are going through all this unfortunate stuff!

    Just to let you know Lyme Disease testing is extremely unreliable and inaccurate. It only detects 50% of cases of Lyme Disease. Crazy but true. The most RELIABLE way to get tested for Lyme Disease is through IGENEX labs. Other lab tests rarely detect it,

    Also, Heavy Metal Toxicity is another thing that is hard to test for. Many people have it, but don't know it. The Heavy Metals don't show up in the blood because they are usually being stored in the nerves, joints and muscle, where they cause all kinds of horrible symptoms. Heavy Metals also tend to get stored in the brain where they cause all kinds of neurological symptoms. Doing a heavy metal detox could be beneficial, Start slow though whatever you do! Chlorella is a great detoxifier of heavy metals. You can buy it at the health food store.

    Good luck!

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