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Lita31

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Please tell me if this sounds familar to any of you... I am a 31 year old mixed race female and 2 months ago I started to have trouble swallowing, then trouble breathing came next, soon all the muscles in my body hurt and felt very weak. The weakness and pain started with my neck, jaw and upper arms and is now all over. I also have occasional twitches in random muscles. As time has gone on there are now constant creaks and pops all over my body, like everywhere. Is this a sign of muscle breakdown?

And I have seen a Pulmonologist as well as an ENT to rule out other problems. Everything seems to be related to one issue and it isn't specifically my lungs, throat, or esophagus. I have been seeing a Neurologist, but he did some blood testing before my symptoms ramped up and didnt find any muscle loss. I am beginning to think he should do them again now that my symptoms are more intense.
The breathing issues seem ongoing. It feels like I can't take a full breath most of the time, but oxygen levels stay high enough.
Either way even my husband is noticing that I am so quiet at night when I sleep now that he is worried I'm not breathing.
I am so afraid and am not getting any answers. Could this be ALS?
 

lgelb

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I don't see any indication of ALS in what you have described. If you have significant daytime sleepiness, your PCP, pulmo or neuro might suggest a sleep study. You can Google Epworth and take the quiz for yourself.

I would find a PCP that you trust and can stay with through any further diagnostic process. S/he might also refer you to a rheumatologist to rule out a connective tissue disorder or something of that sort.

But I would also caution you that making assumptions like "everything seems to be related to one issue" may not be true.

Best,
Laurie
 

Lita31

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Hi Laurie,
Thank you so much for the reply. I also forgot to mention that my face gets weak when eating or talking, even smiling for too long, to the point where it shakes. I also have had a hoarse voice for the last 2 months that acid reducers prescribed by my PCP hasnt seemed to help.

I completely agree, my PCP has been sending me to different specialists recently trying to help with getting answers. I have made an appointment with a Rheumatologist for next Friday and am hoping he can shed some light on these symptoms. I am also going to ask my Neurologist to order an EMG test, I assume it will help with some more solid information as well. I truly appreciate your help and support, this has been a frightening few months and I am trying to stay calm.
 

Lita31

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I hate to post again, but I am truly terrified today. I am still experiencing the strange muscle weakness in my chest so severe I have trouble getting full breaths. Today trying to do last minute shopping had me struggling. I woke up with the same ongoing extreme muscle weakness everywhere, stomach, legs, arms, neck, under chin, and face. Extended movement or lifting and my muscles start getting more tired and soon shake. Swallowing continues to be an issue, but liquids are easier. My voice is still hoarse, but not as bad as it has been since all this started.

I find myself clumsy doing certain things and having to very firmly plant my feet so as not to trip. Honestly the breathing is what truly concerns me the most. After all the ED visits and exclusionary visits to a Pulm doctor and a GI/ENT I am afraid I won't get a diagnosis or help before something happens to me.

It has been a long few months and it seems things have only progressed further. My breathing test came back normal as did my CT scans, yet I still find myself using my accessory muscles to breathe, and my family keeps mentioning I seem to struggle with finishing a sentence without more than one breath and that my breathing seems awfully shallow.

I am going to ask my Neurologist Wednesday to please schedule an EMG asap. If this is muscle or neuro related I am assuming it will show up? I am sorry to be seeking knowledge and support on Christmas Eve. I wish you all a peaceful holiday.

Thank you,
Carly
 

Nikki J

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If you had respiratory involvement from ALS it would be apparent in pulmonary testing. You said you saw a pulmonologist and your breathing tests were normal
 

Bestfriends14

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Not a single thing you listed is indicative of ALS; not one. Your pulmonary test, as Nikki said, would have shown something. When the lungs are failing, it is very obvious when tested. As PALS are required to have about a million respiratory tests throughout their ALS journey, they are very knowledgeable when answering your questions. As such, you should now be assured that nothing you describe suggests ALS.

I do hope you can let this go and enjoy the holiday season.

Best of luck to you in the future and Merry Christmas.
 

Lita31

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Thank you both for your replies, I so deeply appreciate your help. I will do my best to figure this out. Have a wonderful holiday and good evening.

Thank you,
Carly
 

Lita31

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Hello,
I wanted to update on my current situation. My symptoms started 8 weeks ago, I had an EMG/Nerve conduction test. The doctor said it was not indicative of any issues. But I saw the Nerve report before leaving and apparently my popliteal nerve in left foot had no response and the tibial nerve in the leg also had reduced response. My EMG was normal. Should I trust that this is an all clear?

My shortness of breath, heavy chest, muscle twitches, discomfort and spasms haven't abated, neither has the balance issue. I also seem to be having some issues pronouncing my S words and my jaw constantly gets so fatigued. Is it possible this is not neurological?

I wonder why he hasnt ordered an MRI or a muscle biopsy considering the muscle issues. I would really like to believe this is an all clear, but something is seriously wrong with my body responses and isn't getting better or even plateauing. I apologize for continuing to ask questions, but I am truly scared that he is not taking my symptoms seriously.
 

lgelb

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You should discuss the leg nerve conduction issues with the neurologist. They don't relate to ALS, which, of course, the normal EMG points away from. But he should lay this out for you -- for instance, if there is an old injury causing problems, whether PT would help. You do not say whether the deficits were sensory or motor so it's hard to comment otherwise.

Likewise, you can ask what differentials, if any, are still on the table as regards your breathing and balance issues.

Most myopathies are excluded with a normal EMG. Some are not. You can ask if there is any indication for a muscle biopsy based on your history and these findings.

If you don't get satisfactory answers, you can see another neurologist who specializes in neuromuscular disease, bringing your test results and records so as not to duplicate efforts.

The good news is a clear EMG with the symptoms you have points away from ALS.
 

Big Rob

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Hi There,

After I lost my 2 brothers to ALS 3 years ago I experienced all the same symptoms you are experiencing now. I saw an Ear,Nose & Throat Dr, a Pulmonologists and my Brothers' neurologist and they ran all kinds of test and everything came back negative. One thing they all said was Stress and Constantly thinking about is what was causing my body to act strange. I even noted every time my body twitched and that was easily up to 15 times a day. Every part of my body was twitching and I was scared. After everything had calmed down i started to control myself mentally and not dwell on it so much and slowly but surely all my experiences started to fade. I ask you to please think positive and not to dwell on it so much. Do not stress about it and go about you daily activities, Dr's appts. and you will get through this. It will take time but it seems like you do not have ALS.

Hope this helps.
Big Rob
 

Lita31

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Btw I forgot to add that they did a ESR test and a CRP protein test and both were high. ESR at 49 and CRP at 19.1. I read that these usually point to inflammation in the body and CRP specifically to muscle.

Thank you both so much for your responses, I am doing my best to keep moving forward and not to give up on getting answers without going crazy. I appreciate your knowledge and I am going to ask the Neurologist for a clear explanation of those nerve issues that were noted in my left leg. I also will be carrying all my testing and papers with me to the Rheumatologist tomorrow. My Neurologist had suggested that I see a Rheumatologist based on my symptoms. I am praying and hoping for some answers. Thank you again.
 

Lita31

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Hello,
Unfortunately I am feeling worse as the days pass. I went to the Rheumatologist yesterday as planned, he basically told me he doesn't know what it is based on the labs he reviewed from the Neurologist. He said my inflammation markers are up high, but that it doesn't point to anything specific at this moment. He said he will treat me tentatively for Fibromyalgia with Gabapentin. That confused me because the breathing issues and swallowing issues don't necessarily fit that diagnosis.

He didn't want to order further lab tests, MRI or muscle biopsies yet. I spent most of yesterday in pain, trying to walk up the stairs in my house and kept dropping things like my hands were weak and feeling like my legs would give out beneath me. Still twitching and spasming in my jaw, legs and feet mostly. I still have the severe head and nasal congestion that comes and goes since this all started.

I took a shower this morning and when I went to get out my knees felt like they were intensely stiff, almost locked and unable to bend, very painful. I then climbed into my bed and my hip joint/muscle spasmed from the same stiffness I assume from standing in one place for so long.

Gravelly or grinding sounds are coming from all my joints and my neck and back when moving, those are newer symptoms and also came on relatively suddenly. I did have some pins and needles feelings yesterday randomly around my body which isn't usual.

Please tell me what you believe I should do next...? I don't even know what I should ask to be tested for at this point. EMG/NCV test cleared me supposedly, but has anyone seen this type of progression before? I hate to keep asking questions, but I feel deeply that something came on abruptly a few months ago (unless I'm missing something) and is progressing quickly, not sure what yet.
 

Bestfriends14

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Lita,

You've been given several answers for your symptoms that for whatever reason, you are choosing not to listen to. I'm sorry, but this is not a general health forum and you are asking dying people to diagnose you. That's not ok.

You do not have ALS so please stop chasing an ALS diagnosis. When no is no, it is no. Full stop. No, you do not evidence ALS. Please be grateful for this instead of finding ways to be told your symptoms show such an awful disease.

Best of luck to you in the future and take good care.
 

KarenNWendyn

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Keep working with the rheumatologist. Not all inflammatory conditions reveal themselves right away. You could have fibromyalgia plus something inflammatory. Fibromyalgia tends to amplify pain from other conditions, making everything feel worse. The fibromyalgia per se does not cause elevated inflammatory markers in the blood, so this suggests there’s more going on.

Any any case, your EMG did not show any abnormalities, and your history also does not suggest ALS. Elevated inflammatory markers in the blood point away from ALS.

So you’re cleared of ALS.

That’s wonderful news and you don’t belong on an ALS forum. You still need an explanation for your symptoms, but that’s not something this forum is set up to do. Keep working with your doctors, and best of luck to you.
 

Lita31

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Thank you both for your responses, I truly appreciate your kindness and for taking the time and energy to answer. I won't be posting again unless I get a firm diagnosis.
 
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