Scared and don't know where else to turn

[Andrea1653]

Hello, I have been searching around on this site for about a year now, but more often the past few months. I have been very hesitant on whether or not i should post as i do not want to waste your time, but I am to the point where i feel as though I have nowhere else to turn. I know you are not doctors and cannot diagnose me, but because you all have so much knowledge about this horrible disease, I would greatly appreciate your opinions, feedback and guidance.

My story is long and my symptoms are many. I want to apologize in advance, as I am not sure how to condense this without leaving out important details.

A quick background, I am a 33 year old mother of 3 (ages 9, 2 and 4 months). I do have generalized anxiety disorder that started around the time I gave birth to my first child and has gotten progressively worse since then. I also was anorexic for several years and at my lowest weight i was 87 lbs (I'm 5'8 ). I was in recovery when i got pregnant with my second child weighing around 100 lbs at that time. I gained 30 lbs during the pregnancy but I had a lot of issues throughout my pregnancy due to the fact that my body just could not handle it because I had been malnourished for so long. My point in telling you this, is that after I had my daughter is when I started having all sorts of health issues.

My issues ranged from gastrointestinal problems, Joint issues, vision problems, brain fog, Icepick headaches, constant fatigue and lack of energy, dizziness/vertigo, shortness of breath and speech issues. I had blood drawn for the fatigue and the only thing that came back abnormal was low vitamin d levels, which I took a supplement for and my levels came up to within normal range but the fatigue was still present. I had a chest xray for shortness of breath ( I had smoked for 15 years) which was normal, Endoscopy for gastrointestinal problems which was normal as well. My ENT specialist wanted to do a brain MRI with contrast for the dizziness/vertigo but I found out I was pregnant with baby #3 so I had to postpone the MRI until after I had the baby.

Around that time, which was August of 2016, was when I started noticing the symptoms that led me to this site. The first symptom was that I noticed that the pointer finger would shake back and forth very quickly when I put my finger in a certain position. Shortly after this, I became aware that my entire body seemed to constantly be shaking, and was much worse after any kind of exertion. If I hold very still you can see my hair shaking, or my shirt shaking, etc. It also feels like my left should/bicep area and back are vibrating. It gets worse throughout the day. If I lean up against a wall, it feels like the wall is vibrating or if I sit with my back on the couch it feels as though the couch is vibrating, etc.

I feel weak. All over. If I purse my lips, them tremor. If I raise my eyebrows, they do the same. If I would pick up a 24 pack of water and carry it inside, once I set it down I will be shaking like a leaf and need to sit down to rest for the shaking to lessen. It never goes away 100% though. I took my daughter on a bike ride and had to come back because my legs felt so weak and when I got off of my bike my legs were shaking so bad and I thought my legs were going to give out.

My movements don’t seem fluid anymore. If I bend my wrists down, they judder down as well as ankles, etc.

I was very confused about every thing that was going on so I went to Dr. Google and discovered ALS as one of the possible causes. I had read something about tongue fasciculation's and decided to go to the mirror and check out my tongue. HUGE MISTAKE!! When I stuck my tongue out, it looked like the left side of my tongue was in a dance off competition with the right side of my tongue! It was bouncing all over the place! This has continued to this day. That's when the true panic set in and when the fasciculation’s started.

From that point, I started having fasciculation’s everywhere. They were random at that point but mostly felt in my neck, back, left arm. Because of the fasciculation’s, my tongue and my left arm (which was fatiguing much faster than the right and the arm and where I felt the vibrations the most) were my biggest concern so I got a referral to see a neurologist in January of 2017. She is my current neurologist, and she specializes in strokes. She did a basic exam, said she didn't find anything unusual but would schedule an emg just in case. She did not note whether or not my reflexes were brisk but when she checked for Babinski, my toes didn’t move at all on either foot. My OBGYN didn't want me having the MRI done until after I had the baby so I had to wait once again with my symptoms getting worse by the month.

I had also been having trouble with my speech for some time. It isn’t so much that I’m slurring my words, although I think I do a little bit but no one else seems to think so. But when I talk, sometimes words just come out wrong, like I completely garble the words up. I feel like I have to try harder to enunciate my words properly.

Fast forward to after the birth of my last baby which was May 9th 2017. My symptoms have gotten worse and I have new ones as well. The shaking, vibrating, feeling of weakness (mostly on left side), fasciculation’s and overall fatigue is a lot worse, but up until July, most of my symptoms seemed to be from the waste up, besides the shaking which was everywhere.

If you are still with me, thank you so much!

In July I noticed that my left foot looked noticeably different than my right foot. It was thinner and the extensor digitorum brevis muscle on my left foot is much smaller on my left foot than it is on my right. And just above that muscle there is a huge crater that is not there on my right foot. I then noticed that there are constant fasciculation’s on the top of my foot, and I also have contraction fasciculation’s. If I press my toes down or up, it looks like an electrical storm on the top of my foot. I was also noticing that it felt awkward to stand. The arch of my foot feels strange and when I stand it feels as though I am not standing on it naturally anymore.

By August 2017 I have had a Brain MRI which the only things noted were that I have a partially empty Sella and there is Sulcal prominence that is slightly advanced for patients age. I have had a full spine MRI which only showed mild bulging discs in my lower back but that they weren’t cutting off any of my nerves and wouldn’t cause my symptoms. I have had tons of blood work to check for lymes, Autoimmune, vitamin deficiencies, ck , etc. All of which were negative or normal. I also had an EMG done by a Neurophysiologist, which was done on the left side of my body. 3 needles in my feet (none in the arch or under my foot), 1 halfway up my shin, one in my calf, shoulder and hand. Several up my back and in the back of my neck and one under my chin. The NVC was normal and he told me that he saw the fasciculation’s but that was it and told me I have BFS.

Since then, things have gotten progressively worse. My left foot looks like it has atrophied so much in the past 2 ½ months, my tendons are now sticking out on my left foot, especially up at the top of my foot where the lower leg meets the foot. I am having significant pain all over the foot and ankle, it feels as though my bones and tendons are rubbing together. I have pains from sharp pains, to aching, sore, and to where My foot almost feels bruised. I wake up every morning and my foot and toes are stiff and hurt non stop all day long but it is much worse after walking any short distances. The Fasciculations are also worse when I am up and walking. It feels like non stop pop corn popping. When I wear flip flops, the left one slides off while walking constantly and when I wear shoes it hurts my foot. The bottom of my foot hurts to walk on any hard surface and it looks as though there is loose and wrinkled skin, which is not the case for my right foot.

My foot/ankle and shin feel weak. Walking is a huge challenge for me now. If I walk, even for a short distance it feels harder to lift my foot up. Im not tripping but I’m also sitting for about 80% of the day now because I think I’m doing more damage to my leg and foot by walking. I also have non stop fasciculation’s not only on the top of my foot, but the bottom and arch as well, and they are becoming more frequent in my lower leg. All of the foot/ankle/lower leg symptoms are only on my left side. And they just started in my foot in July and seem to be spreading up my leg at an alarming rate.

My calf on the left side feels like its going to cramp up, but never fully does. My shin muscles feel weak when walking. I have atrophy all over my foot and ankle. Pain and aching in foot/ lower leg that is worse when walking but always present. My shoulder feels weak and heavy. Fasciculations for over 3 months that are 24/7 in my foot, becoming more frequent in lower leg and random ones all over. The body wide fasciculation’s have been going on for a year now. Constant shaking/ trembling/ vibrating and general fatigue everywhere

These symptoms started a year ago, but dropped down to my foot in july and it has been rapidly progressing since. With the way my leg and foot feels, I am afraid I am not going to be able to walk in a couple of months. What I don’t have is answers as to why this is happening to me.

As of now I am not clinically weak. I can pass all of the tests the neurologists ask me to perform. I don’t understand how I can have so much atrophy in my foot but I am not clinically weak. I am however, not able to do all of the things I used to do. I was always a go go go kind of person. I never sat down. Now, even housework seems to be hard. The more I walk on my foot, the weaker it feels and the more pain I’m in, and the weakness is spreading up my leg. I also don’t think I could run. I can’t take my kids places because it’s too hard on me now. If I hold my 2 year old daughter, I limp because it’s like my leg can’t support the extra weight. Something is seriously wrong with me and I am terrified that I have ALS. I am having a hard time functioning and I don’t know who else to turn to because everyone seems to write me off as an anxiety case and I know my anxiety can’t cause this.

Any opinions, feedback or suggestions would be appreciated more than you know.

 

[Andrea1653]

I am not sure how to add an image, but I got a copy of my EMG report and the needle summary reads:

Concentric needle examination of selected left upper and lower extremity and left cervical, thoracic, and lumbar paraspinal muscles demonstrated increased insertional activities with fasciculation potentials in the quads, gastrocnemius, and especially in the intrinsic foot musculature. A single complex repetitive discharge was noted on examination of the distal extensor digitorum braves. No fibrillation potentials or positive waves were seen in any of the muscles studied. All motor unit potential morphologies and recruitment patterns appeared normal.

Neurological exam:

She has normal muscle bulk and tone in both arms and the right leg. At the left ankle joint, I would agree that there is more prominence of the tendons at the ankle joint, but I do not see any asymmetry in the tibias anterior's or gastrocnemii, and I cannot clearly say that there is asymmetry of the extensor digitorum braves or the intrinsic foot musculature. I did see a couple of tiny fasciculations involving the distal toe extensors on the dorm of the foot. Power testing was full at the deltoids, biceps and triceps, wrist extensors and with grip. Power testing was full at the hip flexors, quads and hamstrings, and foot dorsiflexion and plantar flexion. Toe activation seemed normal on each side. Her deep tendon reflexes are 2+ and symmetric throughout, including ankle jerks. No definite pathologic responses. The toe responses and downing. No clonus. Sensation is preserved in the feet to temperature and vibration.

Comments:

Her neurological examination, as detailed above, reveals no compelling evidence of upper or lower motor neuron dysfunction.

Her electrodiagnostic examination is essentially normal. There is no evidence of motor neuron disease, peripheral neuropathy, or myopathy. Excessive fasciculation potentials seen in several muscles likely indicates a benign fasciculation syndrome.

I was pleased to be able to tell her that i could find no compelling evidence of amyotrophic lateral sclerosis on today's study.

That was my EMG report from August 8th, of 2017. My atrophy is worse now than it was when I had the EMG done. I guess my questions are this.
Aren't increased insertional activity and complex repetitive discharges bad? How is my atrophy getting worse if my EMG was normal? Do my symptoms sound like ALS to you? Where do you think I should go from here?

I am desparate to find answers as I am having a hard time functioning and taking care of my family which makes me feel like a horrible mother. If you have read through all of this, i know I have written a novel, I thank you so very much for your time.

 

[Clearwater AL]

Andea1653, in your third paragraph it pretty much defines the rest of this ridiculously long thread when you wrote...

"I do have generalized anxiety disorder that started around the time I gave birth to my first child and has gotten progressively worse since then. I also was anorexic for several years and at my lowest weight i was 87 lbs."

Further down several more paragraphs you wrote...

" I also had an EMG done by a Neurophysiologist, which was done on the left side of my body. 3 needles in my feet (none in the arch or under my foot), 1 halfway up my shin, one in my calf, shoulder and hand. Several up my back and in the back of my neck and one under my chin. The NVC was normal and he told me that he saw the fasciculation’s but that was it and told me I have BFS."

You've had numerous tests involving several doctors and it is apparent none have indicated ALS.

Adding to that... you also wrote,

"As of now I am not clinically weak. I can pass all of the tests the neurologists ask me to perform."

Once again...

"I do have generalized anxiety disorder that started around the time I gave birth to my first child and has gotten progressively worse since then. I also was anorexic for several years and at my lowest weight i was 87 lbs."

You have a severe anxiety problem. And... there is a link between being anorexic and anxiety.

 

[Andrea1653]

I know I have an anxiety problem, I have for a very long time. I just don't know how anxiety can cause atrophy and weakness. I know it's not clinical weakness, but I am unable to do things that I have always been able to do, my foot/ankle looks more atrophied every week, and that scares me. I apologize for the ridiculously long post and for wasting your time. Thank you for the quick response, I appreciate it very much.

 

[Angiegal]

Andrea,
1) Atrophy in ALS usually follows failure. In my case, my left arm does not work. The muscles now are starting to atrophy because of disuse.
2) Anxiety can cause SOOO many problems.
3) Please follow up with your doctors.
4) This is going to sound cold. Stop. Worrying. About. ALS. Use that energy you're wasting on worry on your children. Go to the park, play, have fun. Stop googling and start living your life


Angie

 

[Clearwater AL]

I forgot but want to add. Your first sentence caught my eye as you wrote...

"Hello, I have been searching around on this site for about a year now, but more often the past few months."

Knowing you have been assured you do not have ALS, EMG summary and all, and you have undoubtedly read many anxiety DIHALS threads very similar to yours over the past year and recent months, if I may gently ask...

"What were you thinking when you composed this rambling essay?

That one of us might say,

"Regardless to all of the tests, the doctors, the Neurologist, the EMG summary saying you do not have ALS... someone here might tell you ALS is still a consideration."

Finally, I am impressed with your memory.

Let go of ALS. Focus on getting yourself together... for your family.

 

[Andrea1653]

When I first started searching this site a year ago, my main concern was the fasciculations which at that point were random all over my body along with shaking and vibrating that was worse in my left shoulder. As I searched the site, I realized that I couldn't identify with many of the ALS symptoms other than fasciculations, which you all have said are usually meaningless, especially if they are all over your body.

That calmed my fears for a while until my symptoms started to rapidly progress a few months ago, and I am now unable to do many things that I have never had any problems doing in the past. I am having trouble walking, I can't play and interact with my kids how I always have before. Just vacuuming my house makes my foot/leg feel very fatigued, not to mention the pain it causes in my foot, and I need to sit down and rest. If you look at a picture of my foot 3 months ago when I started having a problem with it versus now, the changes are dramatic. My symptoms are evolving and progressing. The fact that my fasciculations have now taken up permanent residence in my bad foot and seem to be traveling up my leg along with the weakness/atrophy, scares the living daylights out of me.

I am fully aware what my anxiety is capable of, I've been living with it for 9 years, and I'm telling you that it is not capable of doing whatever is happening to me now.

I know that there are a lot of anxiety DIHALS threads, but there are also ones where people have real physical symptoms and are in limbo land because they can't figure out what is wrong with them, and forgive me if you think I'm wrong, but I think I fall into that category. That is the reason why I came to this site and composed this rambling essay, because I'm scared and I am looking for guidance and opinions.

I have read members on the forum say that not all symptoms have to be from one disease. You could have multiple things going on at once such as you can have ALS and Fibromyalgia. Yes, I have anxiety, but that doesn't mean that there isn't something else wrong with me.

I am trying so hard to get myself together for my family, but its hard when you have very real physical symptoms that are prohibiting you from functioning properly and no one can tell you whats wrong.

I don't want this disease, I wish no one had this disease. And I am in no way trying to be disrespectful or argue with you by saying any of this, so I hope you don't take it that way. I have the upmost respect and admiration for all of you having to battle this horrible disease while trying to help people like myself.

I just feel as though the second people hear the word anxiety, they immediately write the person off, and I don't believe that, that is always the case.

I was just looking for some insight into whether or not you thought my symptoms sounded like ALS, and some guidance because I'm scared and not really sure what to do.

I'm sorry if you feel like I have wasted your time, I am just very concerned about my symptoms. I have an appointment next week with a podiatrist in hopes that he can figure out if it is actually muscle atrophy that I am having or something else as all of the neurologists i have seen have said "I'm not really sure if there is even muscle there".

 

[Clearwater AL]

Andrea, the best thing you can do is... call for another Neuro appointment. Copy and print your posts here and hand them to him/her at that appointment so you don't forget anything.

Per the EMG summary...

(Her electrodiagnostic examination is essentially normal. There is no evidence of motor neuron disease, peripheral neuropathy, or myopathy. Excessive fasciculation potentials seen in several muscles likely indicates a benign fasciculation syndrome.

I was pleased to be able to tell her that i could find no compelling evidence of amyotrophic lateral sclerosis on today's study.)

It's up to you...

 

[ShiftKicker]

Andrea-

I am not dismissing all of your symptoms as anxiety. I do think it's important to continue seeing a doctor to hunt down the source of your symptoms. I am positive you know (because you mentioned it) that anorexia can cause a lifetime of health problems due to the load your body bore in trying to keep you alive when not provided proper nourishment. The fact that you have had 3 children while recovering from long term malnourishment also places a load on your recovering body.

I would like to make sure your doctors know of your past health condition so they can make sure there is not some vital mineral/vitamin deficiency or some vital process being overloaded. I would also like to know if you are under the care of a psychiatrist to ensure you are receiving the support you need as well. While I don't think you belong here, you definitely do need to keep seeing your doctor to ensure you remain healthy. You are doing well to seek care and I wish you well.

~F

 

[Andrea1653]

Thank you Angie, Al and ShiftKicker for your responses. They are appreciated more than you know.

ShiftKicker:

I hope that I don't belong here as well, but my greatest fear is that I do. I have told all of my doctors/neurologists about my anorexia (although I have been recovered for 3 1/2 years) as I also think it is a VERY important part of my past health history, which is why I wanted to include that in my thread here. Unfortunately with my doctors, it always seems to be a side note that is just written down but is not ever considered to be significant in my current health issues. I and my family, of course disagree and think that the anorexia, multiple pregnancies after my body was so badly malnourished and constant anxiety for so many years caused whatever is going on with me now.

I do not see a Psychiatrist, but every doctor I go to tells me I need to. I think I need to really consider finally doing that. It's just very hard for me because I also have social anxiety and talking to people makes me very nervous and fuels my anxiety further, which is the reason that I have not done so already.

Al:

Thank you very much for the guidance. I will definitely be making another Neuro appointment. I am going to wait until after I go to the Podiatrist, in hopes that he can figure out what exactly is deteriorating in my foot/ankle. That way, no one can tell me that "it's all in my head" just because I have anxiety.

My neurologist already knows all of the information that is in this novel that I have written for all of you, as I used all of my notes from past appointments to compose this thread. It made me smile when you said you were impressed with my memory, because in fact, I have a horrible one. That is why I write things down. If I don't, I will forget them.

I know that the normal EMG works in my favor, but I also know that an EMG is only as reliable as the person doing it. Because it was not completely clean i.e. increased insertional activity in the muscles where the fasciculations were found and the complex repetitive discharge, plus my continuing and progressive atrophy and weakness that started in my foot and is making it's way up my leg, has me still horrified that this might be ALS. The fasciculations have changed and they seem to have a purpose now, where as before they were just random. As many on this forum have said "It's not ALS until it can be nothing else", and all of my other tests keep coming out normal. What else am I to think? I have tried so hard to find another explanation for my symptoms but I have yet to find one, and always find myself back here. What else can cause fasciculations, progressive weakness and atrophy that hasn't already been ruled out by my MRI's of brain and spine, my NCS and blood work?

I know I should not try to self diagnose, and only my doctors can truly figure out what is wrong with me. But if I am constantly written off as an anxiety case, who is going to fight for me other than myself? I know there is something seriously wrong with me. That is why I hope I am headed in the right direction with the Podiatrist. He can confirm or deny the muscle atrophy in my foot/ankle, and then I can circle back around to the neurologist with my findings and hopefully find a new course of action from there.

While I have never been more horrified in my life, I have found some comfort in this site. You all are the bravest most inspiring people I have ever encountered. That is why I pray that I don't belong here, because I am not brave or strong enough to have this disease. Thank you from the bottom of my heart for taking the time to read and respond to my thread.

 

[Clearwater AL]

Andrea, here it is... as you wrote...

"I do not see a Psychiatrist, but every doctor I go to tells me I need to."

Key words... "but every doctor I go to tells me I need to."

These are highly trained doctors! We're not and you have been told you do not have ALS.

"I think I need to really consider finally doing that."

Please do.

"It's just very hard for me because I also have social anxiety and talking to people makes me very nervous and fuels my anxiety further, which is the reason that I have not done so already."

It doesn't seem to be a problem here.

PS You also wrote... "My neurologist already knows all of the information that is in this novel that I have written for all of you."

If you can talk to him, who is a doctor... you can talk to a Psychiatrist who is also a doctor.

Please give it a try.

Sorry to all I keep adding to this post

Two years after I returned from Viet Nam I went to a civilian counselor for over a year. Thirty years ago when my wife died at the age of 32 I went to counseling. It works. Again, give it a try.

 

[Andrea1653]

So I went to the podiatrist. He said I have a high arch and with that and the tendons sticking out, it is usually caused by a neurological component. I had an MRI done of my foot and I am waiting for the results. He is checking for either nerve issues or muscle atrophy.

The weakness and atrophy is constantly getting worse as are the fasciculations in my left foot/ankle and lower leg.
I get weaker every single week and the atrophy continues to be more apparent.

The pain is also getting worse. The pain is constant, it feels as though my bones/tendons are rubbing together and causes significant pain. I can’t wear shoes anymore because they hurt my foot too much. I’ve also been having a lot of constant pain in the muscles of back between my shoulder blades. It feels as if I have bad posture.

I think my gait has changed because when I walk for any length of time, my knee and hip hurts. I also will be limping after about an hour because of the pain and fatigue.

I took my kids to an amusement park yesterday and walked around for 4 hours and I can barely walk today because My left foot, ankle and lower leg is so much pain and feels so stiff and weak.

I have body wide shaking and my entire left side seems so much weaker but my biggest issue is in my left foot/ankle and lower leg. I know You aren’t doctors and can’t diagnose me but you know als very well. Does this sound like ALS to you? I’m horrified as I continue to get worse. I don’t ever have better days, only worse days.

 

[Nikki J]

It does not sound like ALS the neurological issue the podiatrist mentioned is Charcot- Marie-Tooth which is unrelated to ALS. I don't know whether you have CMT or not but you can look it up and ask your doctor about it.

 

[Andrea1653]

Hi, Nikki. Thank you so much for your reply, it is truly appreciated. I have looked up CMT before but I can't identify with a lot of the symptoms. Firstly, it seems to be hereditary and the only conditions that run in my family are Alzheimers, heart disease and arthritis. It seems to be symmetric, where as my right foot is not affected, It's only the left. Symptoms include things such as loss of sensation of touch, pins and needles, and reduced or absent reflexes which I do not have any of those.

You seem to be very knowledgable so if you wouldn't mind, I have a couple of questions for you regarding my EMG and the person who administered it. How significant is increased insertional activity and complex repetitive discharges on an EMG? I had increased insertional activity in every muscle where they found fasciculations and a complex repetitive discharge in the muscle in my foot that is a lot smaller than the one on my right. Everything I have read about increased insertional activity and complex repetitive discharges is bad. They are abnormal findings, but my EMG summary states that my results were normal.

Also, would you mind taking a look at my Doctors credentials and let me know what you think? I know that an EMG is only as reliable as the person doing it. He just works at a local hospital, he is not my neurologist and I don't know what I should be looking for in terms of whether or not I can trust his assessment of my EMG based off of his qualifications. My neurologist actually specializes in strokes and admitted to me that neuromuscular is not her expertise. Her exams have always been very basic and she has never tested me for clonus, jaw jerk, or hoffmans. So I am wondering if I have been tested by someone qualified enough to accurately determine whether or not I have a neuromuscular disorder or not?

As for the actual EMG, I read in an archived post from Wright stating that it was nearly impossible to have a thorough EMG in 20 minutes. He had 3 limbs done (18 muscles) and it took 3 hours. My entire exam took over an hour, but the EMG part of it where they did my foot, leg, arm, hand, back, neck and tongue took only about 20 minutes. The longest part of all of it was trying to warm up my foot for the nerve conduction study. My foot was so cold it took them over 25 minutes of scalding my feet with hot packs trying to warm it up enough so they could get accurate readings. So could my EMG have been done properly if it was administered in such a short period of time?

I guess because of all of these reasons, and the fact that my atrophy, weakness and fasciculations are progressively getting worse and spreading up my leg, only on the left side, that I am having trouble with a BFS diagnosis. The tendons in my left foot at the ankle joint that are visual in the picture i posted above, where not there a few months ago. It looks like someone took an ice-cream scooper to the arch of my foot, and the area behind my leg by my achillis tendon, the muscles are almost completely gone, which is not the case for my right foot. Accompanied with this atrophy is 24/7 fasciculations, weakness and pain. And all of this is spreading up my leg into my calf and shin. I am only able to do a fraction of what I was capable of doing 4 months ago, so I don't know how I could have BFS with all of this going on.

I will attach my EMG report/summary and the doctor who administered the EMG's credentials below. Any insight or feedback would be greatly appreciated!

 

[Andrea1653]

EMG report/summary and Doctors credentials.