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DD78

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Hello all,

I have been a lurker on your forum for the past couple of weeks. I have been amazed by how informative and compassionate people have been. I am hoping you will read and comment on my story.


Just over a year ago, I developed hip pain I walk (A LOT!). At first, I thought it was just from all the walking, Later last year, the pain continued and I started to get pain in my upper back and shoulder. Earlier this year from an MRI, I found out that I had tendinosis (chronic tendinopathy) of the hip and also a burst cyst. The back x-ray showed that I had degenerative disc disease I had a cervical and thoracic MRI, which revealed nothing new (no pinched nerves). The pain in my shoulder continued as well, but the doctor said it was probably bursitis No follow up was ever done on that shoulder, but I was referred to a rheumatologist.

He did a full blood panel, which found nothing out of the ordinary. I started to get pain in my other shoulder and started noticing some weakness in my arm. Then I started getting muscle spasms in my upper back/shoulders and an extreme tightness on the left side up to my jaw. I also started getting muscle twitching. For a while, my right leg (pelvic area) was bothering me too. I went back to my general doctor, who said it was stress and that the twitching was normal. He prescribed muscle relaxants for the evening, and Xanax for the daytime. The pain continued and so did the weakness. I was now having difficulty lifting things (with both arms), so I went back to my rheumatologist. I asked about the possibility of Fibromyalgia (since I felt like I had all over pain), but he said he felt that was more of an "all in your head" illness. He made me do some stretches and told me I most likely had hypermobility joint syndrome. However, because of the weakness he decided to send me for an EMG. (My appointment is two days from now)

Last week, was when everything changed. I actually started feeling better because my back pain went away. I still had some weakness and some pain in my arms, but I thought things were starting to get better. Then, came the muscle twitches. It started in my feet, then in my calves. They seemed unrelenting. It really started to scare me. I started to get them all over, including my tongue. I also started really looking at my biceps - they looked very soft, no real form. I went back to my doctor, who gave me a quick exam. He said my reflexes were good, but I have weakness in the upper and lower limbs. He decided it was time for a neuro consult. He's also testing my thyroid and CK (for muscle issues). He thought it might be Myasthenia Gravis or Rhabdomyolysis. When I asked him about ALS, (hoping he would say, it's rather rare and you're young), he said....I can't say for now. You need to see the neurologist.

I have been agonizing over this for the past week.

In the past few days, my symptoms have gotten worse. Especially in my left arm and right leg. I have weakness and pain when I lift things and when I walk. I have also been trembling. My first appointment with the neurologist is tomorrow morning. I know it's just the first step. While I am curious to see what he will say, I'm also terrified.

Sorry for the long story, but I thought it would be better to explain all the symptoms. As much as I want to believe, hope and pray that it is something else....I have the lingering fear that won't go away.

So now, what do all you lovely people think?

DD
 
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You seem to use it feels, or it hurts when..... These are not symptoms of ALS. With ALS nothing feels different, no pain, it just doesn't work. The other thing is ALS never gets better, once you lose a muscle it is gone for good. All in all you have nothing to worry about. By all means get it checked out, but you don't need to hang out here.
Vincent
 
DD78: Vincent is absolutely right. You don't have ALS or anything like it. No way. No how.

None of your symptoms have anything to do with ALS. I can't tell you what you've got, and I won't venture a guess, since I'm not a doctor. But we know ALS pretty well, and you don't have it.

Many doctors don't understand ALS; it's a rare disease, and it is in many ways very different from diseases with "similar" symptoms. It defies intuition. I think your doctor could have explained a little better. Certainly, the neurologist needs to do the EMG and see what can be seen, but from what you've described, he isn't going to see ALS.

The first thing that ALS does to you is it paralyzes a muscle, making it limp and useless. There's no feeling involved whatsoever. You just can't use that muscle anymore. Then, it paralyzes another muscle, and another, until your whole hand (or foot) is limp and unresponsive. ALS is about paralysis, not pain.

Sorry to see you've been misled and found yourself here. You don't need to worry about fatal diseases like ALS. Just follow up with your doctor and get your pain and weakness resolved.
 
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Hello Vincent and Atsugi!

Thank you both so very much for responding. I really appreciate your feedback and it definitely helps to put my mind at ease.

I think why I (and maybe my general doctor) thought it was something that couldn't be ruled out, was because even though I've had pain - I've also had progressive weakness in both arms (left being much weaker than the right), noticeable loss of muscle tone and that I also have some leg weakness in both legs (right being worse than left - left might be due to my tendinosis). And when I'm walking, sometimes my legs feel like I'm getting painful cramping. I also forgot to mention that I had issues with my hands as well and my facial muscles tremble on the left side - thought that might be due to the TMJ/TMD disorder I have (my jaw joint pops a lot). Also, the fasciculations all over (calves and feet being the worst) and even on the tongue. It has died down over the past couple of days, but every time I feel one....it's a reminder to me that something is off.

I also read some stories in which ASL started with knee pain or shoulder pain that never went away, and then became progressively weak. After that, other limbs became affected. I read about a woman who had shoulder pain on one side, then the other. Had trouble doing things with both her arms and lifting them up (she mentioned tossing salad was difficult). Unfortunately, it when downhill for her from there.

And then there's Dr. Google! If you type muscle weakness and fasciculations.....well, you know what the first thing that comes up is! I was looking for other alternatives as to what I might have, but haven't really found much. Some of them were: Thyrotoxic Myopathy (which can actually be mistaken for ALS), MMN (again, can be mistaken), Issac's Syndrome, Polymyositis, Neuromyotonia, Chronic inflammatory Demyelinating Polyneuropathy and a couple of others. Maybe Fibro or Benign Fasciculation Syndrome? I really don't know, I just hope I can get some answers.

My neuro appointment is tomorrow morning and my EMG is on Thursday, so we'll see what happens.

I do hope you both are right though. Thanks again!

DD
 
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Had my first neuro appointment today. Turns out I have hyperreflexia (brisk reflexes). I was surprised by how high my right leg went up. Surprisingly, he didn't do the babinski reflex. My strength was "very good", and he reported nothing too out of the ordinary from my exam. We discussed the possibility of ALS and he said it wasn't off the table, but he thought it was low on the list of possibilities. Trying to stay positive, but that brisk reflex thing really threw me off. He wants to test me for Myasthenia Gravis and sent me for STAT blood tests: Calcium, CK, Creatinine, Serum Protein, CRP, Sed. Rate, B12, TSH and Acetylcholine Receptor.

Tomorrow is the EMG test. I am beyond terrified. I want to get it over with and know what is going on, but at the same time....I don't. I'm scared.

If anyone can answer these about the EMG:

- Does anxiety throw off the EMG results? I have a feeling I am not going to be very calm!

- If the test was abnormal, would they be able to tell you why?

- Would the test definitely confirm ALS, or would more testing have to be done?

Thanks in advance

DD
 
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No
Maybe depending on what they see
If it shows changes consistent with ALS generally there are a number of blood tests that need to be done to rule out mimics and usually an mri ,plus to have ALS you need to have an exam showing upper motor dysfunction which you apparently did not have. Hyperreflexia alone is not enough and can be normal or caused by anxiety.
Good luck with EMG. Do not wear lotion for some reason it makes it more uncomfortable
 
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"If the test was abnormal, would they be able to tell you why?"

Yes, most abnormalities are acute denervation or chronic denervation wth reinnervation, which show different problems. The EMG will also tell you and your neuro which muscles are involved. Is it a localized problem (e.g., in just one arm) or is it widespread?

An abnormal EMG does not prove ALS, as there are many potential causes--problems in the spinal canal, pinched nerves in shoulders, elbow or wrists, etc.
 
Hi Nikki and Dusty. I really appreciate the feedback. Dusty, my problems are pretty widespread. More in the upper arms and right leg.

I go for my EMG in just over 3 hours. I'm already a nervous wreck! Trying to keep it together...

Thanks again for everything.

DD
 
What matters is where the problems are according to the EMG.
 
Hello all - hi Nikki (thanks for your message!)

I went for the EMG test yesterday, and it was clean. I am extremely grateful. At the same time, I feel quite ashamed and embarrassed for coming on this site and venting as I did. Although my symptoms are very real, I realize that I let my own personal feelings and obsessive-compulsive tendencies to match all my symptoms, consume me. I'm sure there are others who can relate. Fear, panic and the unknown can be a terrible thing. And sometimes....so can Google. To the people on this forum, I apologize.

I don't know 100% what is going on, as I am still waiting on other tests. From what the neurologist told me yesterday and my general doctor told me today, anemia and Fibromyalgia may be a part of it.

Thank you to everyone who read and responded to my message (especially Nikki, Atsugi, Vincent and Dusty). Your kind words and assurance helped me so much.

I sincerely hope they find a cure for this dreaded disease.

All the best to everyone

DD
 
Thanks for letting us know! We love good news! Good luck in finding a diagnosis hopefully something easily fixed.
Please do not apologize. You were polite and respectful and only really posted a couple of times ( and responded to members' replies)
Thank you for your good wishes
 
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