Undetermined Symptoms for Over a Year

[Theresa56]

Hello to All. Thank You for allowing me to express my concerns and worries. My post will be long, but feel I need to explain, as best I can. I am a 62-year-old female.

To list some of my medical issues may be of help:
Crohn's/Colitis which is currently in remission;
Fibromyalgia; Raynard's; Severe cervical degeneration with radiculopathy;
lumbar degeneration and L5-S1 inter body fusion 2015;
chronic sacroiliitis.

In Sept. 2016 I was diagnosed with Drug-Induced Lupus from Remicade infusions, which I had received for 2 years.

The months that followed were difficult and I experienced many trips to ER. In April, when I thought things may be turning a corner, I awakened one morning to trembling in both my legs, and the dreaded fasciculations had begun. My legs were weak and would spasm, pulling together. This has occurred twice within the past two years, but the fasciculations continue on a daily basis. I notice them most in my legs, but if I am sitting still, can sometimes feel them across my shoulders, abdomen, or back.

I had a torn rotator cuff on the left, which was surgically repaired in October 2017.

Just two months later, having extreme pain in the SI joint on the left, I was found to have trochanteric bursitis with a torn gluteus medius and hamstring (partial tears).

So, my anxiety level just keeps getting higher and my stress is out of control. When the fasciculations first started, I was sent to Neurology 07/2017 and had a full workup, with MRI, and EMG/NCV.

MRI was "Essentially Normal" with couple of punctate scattered areas of nonspecific gliosis.

EMG/NCV was done 08/17 and showed "overuse syndrome" with prolongation of the left median and ulnar sensory distal latencies. Also left lumbar radiculopathy, which they attributed to the surgery.
So, I left from my follow-up feeling encouraged.

After the shoulder surgery in October, I noticed I was beginning to have some difficulty swallowing; feeling like I had an egg stuck in my throat, but also a sensation off to the left side of the esophagus, like a bone sticking in my throat from my cervical region. (Dont even know if this is possible). This continued to get worse and I began to lose weight. I could not eat without food getting stuck and would panic.

Went to GI and they have dilated my esophagus twice in the past two months; still having discomfort and have to be very careful what I eat. Some days are just liquids. I am now being seen at the University of Virginia and will have another EMG/NCV 03/12/18.

To say the least, I am terrified. I can walk on my toes, my heels.I did have a positive Hoffman's Sign in my right hand, but reading on the internet, I am not really sure what to make of this.
I have lost a great amount of weight, so my muscles are not what they used to be, plus my age.
My speech is not slurred, but sometimes it feels as though my tongue is tingling or burning.

Since I had the EMG done seven months ago, and was already having fasciculations, if this was ALS, would it have shown up at that point? Or, now that I am having difficulty with swallowing and continuing fasciculations, can I possibly expect a different diagnosis?

I admit, the last two years for me has been nothing but stress and anxiety related to medical issues. I know this can play a huge part in illness and make you feel as if you have anything and everything possible.

I had put aside my fear of ALS until the swallowing difficulties started and then the fear just completely took over. I have once again started the use of antidepressant, but the swallowing symptoms are still occurring. The last endoscopy with biopsies did show chronic mild inflammation of the lower esophagus, but my doctor has not offered any explanation if this could be related to swallowing.

I apologize for the long post. I also want to say, that it is very Kind of all of you, who are battling with ALS, or helping with a family member, or friend, who is fighting this disease, to take the time to help other's like me, who are living in fear of something not quite known as yet. Thank You All.

 

[KimT]

It really doesn't sound like ALS but I would follow up with all my doctors, including the gastro. If swallowing is an issue, get an ENT consult. They can sometimes uncover things that gastros cannot.

You've been through a lot so having twitches doesn't surprise me.

 

[Theresa56]

Thank you for your response. Can anyone relate as to the relevance of the Hoffmann sign? I tested positive for this during my initial visit to the University of Virginia with Spinal Orthopedic physician/surgeon. He is the one who has ordered the EMG/NCV. My fears had abated for a while but now I am back into full blown panic and anxiety. Don't know how much of my symptoms are spine related due to degeneration. Have been seen for several years in Pain Management for nerve ablations and epidurals. Thank you all for taking the time to read my post.

 

[KarenNWendyn]

If you have any cervical stenosis in and among all that degeneration, that could explain the positive Hoffman. You have a number of other medical issues that could probably explain most of your symptoms. It would be very unlikely that you had an additional very rare disease (ALS) on top of everything else.

 

[Theresa56]

Hello Everyone. My problems with fasciculations continue, along with terrible muscle pain in the neck and left shoulder. I also have pain in the left hip/SI joint that makes it impossible to walk at times due to pain. I was at University of Virginia yesterday for a Cervical MRI and a CT scan of the lumbar spine.

The appt. I am nervous about is tomorrow, in which I see a Neuromuscular physician for EMG/NCS. I am worried sick, but at the same time, hoping I will get answers that put these fears behind me. My last study was "abnormal" due to some nerve damage from back surgery, and also what the doctor called "overuse syndrome" in my left hand/thumb area.

Also, still having issues with swallowing at times. I can engage the act of swallowing, but food does seem to get stuck, and at times it feels like my esophagus is swollen or closing.

I have read all the stickies, but some of the things I am still confused about. I am in a great deal of pain all the time....do you have that much pain with ALS? I wake up in the mornings with both of my feet cramping and my toes will pull down from the cramps. I think the swallowing is what bothers me the most, but also the extreme amount of pain that I deal with on a daily basis, due to muscles in the neck, shoulder, and lower back.

When I get my final test results, I will be sure and post here to share my medical diagnosis. I should get answers on March 5th when I see my Spinal specialist. I am hoping the Neuromuscular physician will tell me my results tomorrow, but I am doubtful.

In the meantime, I am thinking of you all and knowing the battles that you must face every day. I know how my fears have affected my everyday life, and at this point in time....yes, I have symptoms, but not sure what from. I can't even begin to imagine what all your lives are like, but yet you get up every day and face your obstacles. You are all truly Brave and I look up to all of you.

I will post tomorrow if I am told of a diagnosis. Until then, Thank You all for allowing me to post.

 

[Atsugi]

Not ALS. Doesn't sound at all like ALS. All those sensations and pain point AWAY from ALS. The body-wide attack points AWAY from ALS.

Understand how ALS works: ALS is a brain disease that destroys the nerves which tell the muscles to contract. That's it. ALS destroys a nerve, so its corresponding muscle doesn't move. The muscle just lays there, useless. No reason for pain or numbness or any other feelings at all. The muscle just lays there. Then ALS strikes the next nerve, and the next. One at a time over a period of months and years.

So, at first you might lose use of a finger, then the hand, eventually the arm, and so on. There's no reason for you to "feel" anything when ALS is just beginning. When people with ALS have pain, it's typically because they have been immobile for weeks or months, and so the joints get stiff or swell up and hurt.

 

[KimT]

Fibromyalgia can explain the pain.

 

[lgelb]

Theresa, there are many reasons that you could be having pain. We are fairly sure ALS isn't one of them.

You seem to have a good team and plan for separating out treatable causes, and dealing with the symptoms that remain. Those are the important parts of the plan that can improve your quality of life. In re swallowing, I am assuming you were screened for GERD/EE and H. pylori but if not recently, perhaps that could be added in.

When all the tests are in, if you still have difficulty walking, I would ask your primary care team about a walker or even a [better if you already have a cheap one] wheelchair, which some of your dx will clearly support. Life is too short for hobbling if you don't have to.

Feel free to post the EMG results when you get them.

Best,
Laurie