Please help!! My body is failing me, desperate, bad symptoms progressing and now affecting my face!

aschatzman

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I’m female- 40 Yrs old and sorry in advance for the long story.

About 3 years ago at the age of 37, I started feeling heaviness in my shoulders while doing very little, then calves would cramp up for days. Then fasciculations started in arms, legs, and feet and eventually in various other spots. Then leg weakness started (R leg in particular), along with weight loss and weakened grip strength in left hand in particular. Went through testing and vigorous PT & OT after the hospital and was able to put some weight back on and walk around and slowly get back to work.

Over the past 3 years, I have been struggling with the worst fatigue of my life, relentless muscle twitching all over and at random (shoulders, upper arms, chest, stomach, back, glutes, legs and feet). Also feeling like my gait was a bit stiff/off and have had other symptoms pop up like pain and stiffness in hands and fingers to where I couldn’t move them for a few days. I saw doctor and mentioned pain in my neck, shoulder, and back, and widespread chronic twitching. I also noticed the sides of my thighs (esp right) looking different/flatter. I complained of weakness predominantly from left shoulder down to hand.

This year from January to end of May, I have been walking more stiffly. Others have noticed my voice becoming softer with fatigue. I have felt generally unwell. Not one day in 3+ years without fasciculations occurring throughout day. I continued to feel weak and with ongoing pain in neck shoulders and back. At work noticed back of my legs and glutes were starting to feel different, less muscle against chair while sitting.

One day eating normal food, I felt it getting stuck in chest going down. Some pain and weakness in right wrist and difficulty typing at work. Then started having more trouble writing with R hand. Started noticing I was getting out of breath easily not doing much at all and took some time to recover. Also pain and trouble with stomach started and getting overheated to the point of sweating in mornings/sleeping.

By the end of May, I woke up with very stiff heavy legs which made getting around very difficult. Pain/sore feeling in upper thighs as well. Stiffness seemed to subside after a few days however progressively weak since. Beginning June, I was in PT twice a week and doing exercises at home for shoulders, neck and back but instead progressively weakened and developed muscle loss in shoulders, tricep area and back. I noticed it when I questioned why my shoulders were weakening. I got to a point towards end of June where I couldn’t do simple stuff and PT said something medical going on.

My hands for the first time shook like crazy, shoulders and arms as well trying to take a grip strength test which is very weak now compared to last year.

*Things have been progressing quickly since June now. Despite always being active before and attempting exercise I have been losing muscle in shoulders, arms, right hand looks flatter and weak wrist and hands. Dropping and hard time holding phone even.
Muscle loss in glutes, side of glutes, thighs, hip and pelvic area is alarming and making attempts at walking very stiff, awkward, and feels awful. Hips don’t hold me like they use to. Less muscle trying to go the bathroom as well. Began losing muscle in diaphragm and abdominal area and with that came increasing difficulty and tightness breathing.

With weak shoulders and hands, constant shaking and fatigue trying to pick up utensils even. Fasciculations have worsened and started experiencing involuntary movement in shoulder/upper arm area, legs while trying to fall asleep at night -a jerking type movement. Legs are barely now carrying me far and are shaking pretty bad if sitting down and attempt to lift one up. Noticing bottom of calves getting smaller, overall soft muscles in body. Knees and R ankle are starting to feel weakness.

*Scary new and worsening symptoms are also my voice weakening quite a bit now and singing that I used to enjoy even earlier this year is near impossible now. Toothpaste has been running down my throat and gagging on it, coughing and almost throwing up every time. My chewing has weakened taking far more time to eat what I normally could have quickly. Throat feels strange like something stuck and what used to be mainly food feeling it going down is the same with liquids now. Almost uncomfortable to eat or drink with the feeling of it going down and some tightness and gurgling/pain and reflux in stomach/throat/chest.

Lips have weakened, tongue a bit. Facial muscles feel less around outside of jaw and shake around cheeks and eyes when trying to smile/hold up cheeks/side of mouth and around eyes. Trying to close one eye at a time used to be easy and now the muscles are making it hard to do. Jaw gets stiff and also pain in face with movement.

My reflexes in knees have become more brisk and I have also been experiencing a very heightened shock like nerve thing in my body with any sudden noise or stress -startle response.

My body is failing me from head to toe and I’m terrified. I’ve been in and out of Drs offices and ER’s over the past month and a half now with no answers, meanwhile everything is worsening. I haven’t been able to work or drive since June. Lost my job and possibly health insurance without a diagnosis.

*Tests I have had done have been full workup with Rheumatology, MRI’s, Xrays, full bloodwork to check for CK, Myositis, Myasthenia G, etc.

I’ve seen multiple Neurologists in the past 2 months. They didn’t see me before this progressed faster and have no base line to go on. I feel I messed up not following the same doctor. They have felt soft muscles, notated weakness, voice and all, some brisk reflexes, but state no baseline for muscle loss and some things look just out of shape for my age which is infuriating.

Despite noting these things and seeing how I can barely walk, they are basing everything on another’s EMG. Here is the problem I’m running into:

I had one EMG 3 years ago right when this started on a mild level, went back to same place and had a second one beginning of this July, then a different Doctor (Hopkins) end of July. They didn’t see anything suspicious! Not even fasciculations and they are chronic, some visible some not. They sometimes don’t happen long enough aside from feet for me to get video of it or I don’t have phone nearby. They also happen quickly in Drs appt and they haven’t been able to see them yet.

Now I’m trying to get into the Mayo Clinic in MN because I’m doing so poorly! and can’t wait months for another Hopkins appt just to potentially have another regular EMG. I have read EMG has a 60-70% window to pick up MND, and Doctors confirm it’s not 100% and they can also miss things on exam. Apparently ultrasound of the muscles can find ALS? Although I haven’t found a Dr who does it yet.

Things are worsening/happening over days now. I’m going downhill: Breathing, swallowing, speaking, legs, arms, etc. My diaphragm muscles are so tight and I have been in ER literally feeling like this is it for me. I’m not getting any help from medical because of the EMG. This has been the absolute most stressful nightmare of my life, trying to mentally prepare for the worst. I have sick pets at home I can barely take care of any more and I feel I’m losing everyone and everything I love in my life. I had so much I was looking forward to.

Please tell me what to do! How can I have of all this without it showing up on EMG? I have no idea what to do as I’m literally falling apart physically and now mentally and not getting any help. I also don’t have much family and no one to really help me. I want to cry but my muscles are too weak. Perhaps Mayo, since no one on East Coast seems to care or be able to help. I also know nothing can be done if this is what I have and it has been a slow progression over time. Please any advice, answers, input as to my symptoms and all.
 
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KarenNWendyn

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Hello. Firstly, please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

It sounds as if you have seen a number of different doctors including a rheumatologist and at least three neurologists. Did any of them offer you any explanations or find any abnormalities on any of the tests?

It really doesn’t sound like ALS to me, especially with normal EMGs. ALS is diagnosed based on clinical weakness as determined by a physician, characteristic EMG changes in multiple muscle areas, upper motor neuron signs, evidence of disease progression, and ruling out ALS mimics. Did the neurologists you saw feel there was clinical weakness? “Feeling weak” is not the same as clinical weakness noted on exam by a physician. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure and clinical weakness.

You say you’ve been having symptoms for three or more years including fasciculations all that time. Given the duration of symptoms, EMG testing this year surely would have picked up on something if you had ALS.

If you want us to take a look at your EMG, you may take a picture of it and black out any identifying information.

As far as what to do now — what have the neurologists advised? If they did not offer follow up, that’s a good indication they weren’t concerned about a serious neurological condition. Following up with your family physician would be a good idea.
 

lgelb

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Ultrasound of the muscles can show in a general way that there is a muscle problem (though if the US is normal it does not mean that there is not one), but it cannot show whether the problem is due to ALS. So wherever you read that is wrong, A. Likewise, the notion that 30-40% of PALS have normal EMGs post-onset is bogus as well.

Like Karen, I would consider 3 negative EMGs with all the symptoms you report, including two recent ones at Hopkins, pretty definitive evidence against ALS, myopathy and a host of other possibilities. Nor does a 3-year onset make sense for most neurological problems.

And if you had ALS or another paralyzing disease, you wouldn't be reduced to trying to get video of fasciculations to prove the point. Nor would not having stayed with the same neuro be an issue, since atrophy vs. baseline is pretty moot if there are significant functional and objective changes in strength (which is graded on a pretty objective scale from doctor to doctor).

So Karen is right, this is a broader issue or more than one, and since you are clearly in distress, a primary care physician whom you can talk frankly with (and vice versa) is a logical next port of call. But the good news is, you're in the wrong place here.

Best,
Laurie
 

aschatzman

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Thank you ladies for your wisdom and info. It has been about a month since I saw Neuro and at the last appt he notated clinical weakness in my shoulders, triceps, hands, hips in particular, soft muscles, twitches, and brisk reflexes. He also seemed very concerned with all the symptoms until they ran the EMG test and then just said come back in a few months to recheck. I’ve been so much worse since. No abnormalities on any other tests to date.

I will call and see if I can obtain my EMG tests, have only seen office notes, thank you. My primary care Dr said Neuromuscular and had sent me to Hopkins, Rheumatology said Neuro and sent me there.

I’m having even more difficulty today trying to write and eat as my hands and wrists are incredibly weak and shaking badly. Shoulder, back, diaphragm, and hip atrophy are frightening. Neck and shoulder pain is unreal trying to move my arms slightly with the loss. Leg muscles shaky so badly and unable to stand up in shower any longer. Using wheelchair assistance for appts and getting around any bit of distance. Breathing, swallowing, voice and facial weakness are other issues, all getting worse.

I’m so very frightened and it makes sense the EMG should show abnormalities even in some LMN cases before symptoms even start but I can only question how all this muscle stuff could be happening with nothing jumping out on the EMG. So very scared and confused.
 

Bestfriends14

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Do post your EMG results when you get them. However, none of what you're saying you have as symptoms correlate with how ALS starts. We see it time and again here on the forum of folks with "all over weakness", yet that is not how ALS starts at all.

It typically starts distally with an inability to button, zip or grasp something small, or drop foot with an inability to do toe raises or go back on heels. No pain, shakey or aches involved.

Since you have had clean (no ALS) EMGs, and years of symptoms, this truly does point further away from the disease.
 

aschatzman

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Thank you, I will see if I can track down the tests that were taken. Sorry for more q’s too, I’m alone and scared and having difficulty breathing and all.

*Can ALS also start with proximal weakness as well? Shoulder/arm/leg weak?

*Initial symptoms came about minimally a while back such as hand and leg weakness and been very slowly having slight progression, could 3 or less years be the time where its now progressing with atrophy in abdomen, diaphragm, both shoulders, both legs, both hips, weakness in both wrists and hands, etc. Now affecting breathing, swallowing and speaking?

*With loss of muscle in my shoulders, back, hips and thighs, does this typically cause folks a lot of pain in those areas, including neck because of the weakness and strain?

*The shaking in hands/fingers, and legs started recently as I’ve gotten weaker and have loss of muscle, it seems this shaking is from weakened muscles being pushed past the limit with minimal exertion now, can this be?

*Also with EMG, will they typically show all abnormalities of LMN early on or after weakness and atrophy?

Aside from a muscle biopsy or lumbar puncture, I have been checked for everything that could cause this and it just doesn’t match up with the EMG. My head is spinning thinking it’s just not showing yet or for whatever reason. All clinical and physical at this time and I’m in a bad way.

Thank you for your help and guidance!
 

affected

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I think you may have missed this really important post that we made to help people with the questions you have. It really helps answer most of your questions, in the last post and all through this thread. Please read it through, usually reading it twice really helps as there is a lot to take in. This really helps our paralysed members from having to type the same things over and over.

The way you are thinking this disease works is totally off, even with slow progression what is happening to you is not how ALS progresses.
It would seem that your symptoms don't indicate ALS at all. It also seems that your clinical exam did not, and your EMG did not.
Yet despite all this, you are convinced you have the disease.

This is actually quite common. We sympathise and recommend you go back to your doctor and explain how strongly you believe you have something terminal despite all the evidence against it. Your doctor can help you deal with this, and help you find out what is actually going on and the strategy to treat this.

Please post your EMG but we can't keep reassuring you, I think the post I linked to explains why really well.

I do wish you the best as you work with your doctor.
 

lgelb

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Yes, the EMG shows LMN damage even before it's widespread. That's why the 3 normal EMGs are pretty compelling evidence against LMN damage.

And no, atrophy doesn't equate to pain in ALS early on. It tracks with loss of function.

There is no ALS subtype I've ever heard of that presents as you've described.
 

Bestfriends14

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My husband's EMG showed signs of ALS in his right leg 21 months BEFORE he had symptoms. Seriously, please stop trying to find ways to be diagnosed with this dreadful disease.

You should be overjoyed that you have zero symptoms of ALS, yet you are not. Perhaps you should be exploring why that is instead of trying to chase a disease that you really, really do not want.

Btw, hanging around this site and messaging other folks that are on this sub-forum when you have health anxiety only makes your symptoms worse and heightens your anxiety.
 

KimT

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My EMG showed widespread LMN damage when I could still run, play golf, and play the piano. Moreover, I have very slow progression yet multiple EMGs ALL pointed to ALS, long before I was diagnosed. Eventually, clinical symptoms caught up with the EMGs but I NEVER had a normal EMG or one that ruled out ALS.
 

aschatzman

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Hi all, I wanted to say that you are in my thoughts and prayers with everything you are going through and thank you ever so much for this forum.

This week, I’ve had an initial visit and 2 out of the 4 tests scheduled at Mayo. Based on exam, Drs are focusing testing on Neuromuscular and voiced concerns. Especially in age range and inability to build muscle since this started. Could have been slow progression with a rapid decline the past few months. Mentioned that cases can be different starting out.

The fasciculations have been getting more rapid, firing all over and Dr saw my leg, shoulder, and back. Reflexes including jaw have become more brisk. Voice and breathing is weakened. They noted significant weakness and muscle loss in multiple areas. Frightening how it started off on one side/one limb and has spread to other sides and other areas.

My shoulders are so weakened with muscle loss now they aren’t sitting in the same position and chronic Ibuprofen, etc for the pain just trying to move arms slightly or even hold phone.

I can’t lay flat to sleep or really get comfortable at all in certain positions with breathing and loss in abdomen and hips. Having only dreams/nightmares during periods of attempted sleep not ever feeling rested. Coughing and sneezing is difficult with weakened chest and abdominal muscles.

Weakness/atrophy continues in shoulders, neck, back, upper arms, chest, abdomen, hips, glutes, legs, hands, throat and facial muscles. Can barely walk a few steps anymore nor can I lift a light bag. Lost ability to sing and dance which I always enjoyed so very much.

Wrists and fingers as well as R ankle are becoming weaker. When trying to use any of these weak muscles, they are constantly shaking and feel unsupportive now which Doctors saw. This Dr’s online article best describes this and pain from what seems to be happening:


Early next week will have an EMG, swallow test and speech pathologist. Should know more then.

Thank you for listening and any feedback you can provide, trying so very hard not to have constant breakdowns as body continues to weaken.
 

KarenNWendyn

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Do share with us the results of the EMG and swallowing test and the doctor’s assessment. It’s hard to give you additional feedback until then. The fasciculations themselves don’t mean anything. The weakness is another matter. Hopefully a cause other than ALS will soon be revealed. Best of luck to you.
 

aschatzman

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I apologize for more q’s, I’m beyond stressed and so weak. Has anyone had experience at the Mayo Clinic in MN? I’ve seen Gen Neurology initially. Not sure how their EMG may differ from other facilities..

I have to think after 2 months of this level of progression surely it should show abnormalities now. It sounded like a tech conducts the test with a Dr supervising.

Should I ask them to check specific areas this time? and read on NIH if you insert the needle and take hand off for 90 secs while muscle is at rest that can give you a better picture. There is also Motor Unit Number Estimation. Just need to make sure this one truly counts as the last one was rushed and I’m losing so much strength to continue all this.

Thank you for putting up with my probably annoying q’s
 

Nikki J

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I don’t think that anywhere in the US does the motor unit estimation clinically. It is in the protocol for a study I was in but got no results.

I have had a number of research EMGs at NIH performed by the Director of the EMG lab. I did get reports. They did not do this there ever.

Whoever is doing the EMGs at Mayo they know their technique. I am not sure about that 90 second hand off needle. I won’t swear to it but I don’t think mine were done that way and all my EMGs except one were done by board certified physicians at major institutions. They had no trouble picking up the abnormalities however they do it.

I rather thought Mayo EMGs were done by physicians. The nerve conduction studies are often done by techs. In some states it is legal for techs to do EMGs but we rarely if ever see it here

I would never presume to tell an examiner what muscles to check. Anyway with your reported symptoms if it is ALS it shouldn’t be hard to find. My experience with emgs is that the examiner usually asks about symptoms, often does a very brief check and can also watch for weakness during the testing
 
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