Status
Not open for further replies.

laserlight92

New member
Joined
Dec 14, 2015
Messages
4
Reason
Other
Country
US
State
California
City
Belmont
Hello all,

After reading the sticky posts I think it's worth acknowledging that they do address some of my concerns. I'm posting because I experience intense, chronic anxiety and hope that sharing will help me leave behind some of the compulsive forum-reading and symptom-googling.

I am 23 and a 1st year graduate student in applied physics. Typically I have been very active, participating in running, dance, lifting/conditioning as well as academics. This June I developed a small but insidious lower back injury that persisted through inconclusive exams and MRI's as well as months of physical therapy. The injury only slightly impedes my everyday function but forced a cold stop to all my physical activity.

In early November I noticed strange feelings of tightness in my right leg- the leg felt a bit different while walking, perhaps a bit sluggish and tight in the calf. This developed over 1-2 weeks or so. Then I started to get fasciculations in my right tricep area and right calf, which started to freak me out. I also felt some slight tingling and numbness in my right arm, and eventually a slight numbness encroaching down my face.

I saw my primary physician, who told me "it's not early ALS or MS," and recommended I focus on the anxiety component. I had been experiencing sudden rushes of dread, feelings of impending doom, sadness, or occasional excited tingly happiness, each of which happened at strange times not necessarily associated with thoughts. I also developed some symptoms that my primary attributed to "panic attacks". She prescribed me Clonazepam (a benzodiazepine) to be used in small doses as needed, e.g. to help me get to sleep in the face of anxiety and persistent fasciculations. The fasciculations now occur in many places across my body, left, right and abdomen, though feelings of tightness remain stronger on the right.

I saw a neurologist in late November, had an extensive talk and a physical exam. He told me that he was not concerned about ALS or a brain tumor, though he couldn't quite rule out MS.
For this reason he ordered a brain MRI which came back "stone-cold normal" (I felt fortunate). At the next appointment I told him about intermittent feelings of stiffness and weakness in my hands, and he did another quick examination. I told him i was still worried about ALS; his words were roughly, "I don't say this if I have 1% or 2% doubt. I don't think you have ALS".

Meanwhile, taking Clonazepam more regularly helped me calm down some and also quieted the fasciculations a bit. Then I started taking Celexa (an SSRI/antidepressant) intended to help my anxiety. The morning after the first dose I felt a resurgence of twitching and stiffness, which persisted throughout the following 2 weeks (leading up to now). I was prescribed Temazepam to replace Clonazepam, in order to help me get more quality sleep– but anxiety attacks returned with a vengeance this weekend and my symptoms seem to increase with it. My face has begun to feel stiff as well, particularly around the mouth. I'm hypersensitive to my eating, speaking and breathing function and seem to be overreacting to little mishaps.

So I wonder: why am I so preoccupied with worry about ALS, how much should I worry about hand/face/leg stiffness progressing to clinical weakness, and so on.
I have tentative diagnoses of generalized anxiety (needs to be specified by psychiatrist), Tourette's, and Benign Fasciculation Syndrome.

Thanks so much for reading– any and all thoughts are much appreciated!
 
Hon I'm so sorry to hear you have such anxiety, it must be such an awful feeling.

Respectfully I want to tell you that you have not even a single tiny sign of ALS - ZERO! This is great news. Now respectfully I also need to tell you that you are seeking the time and energy of people who are either really and truly dying of this disease, or caring for someone who is. This is a huge thing that we are going through and it takes everything we have. You have asked something we cannot answer - why are you so preoccupied with this. Ask to be sent to a psychiatrist so that you can deal with this. Please understand we just can't help you, we are overwhelmed already with the needs of the true members here.

I hope they get your meds right soon and you start to experience relief and recover. I know that what you are going through is very real and awful for you. Please don't reply, just go back to your doctors.
 
Laser, I see you're still here, so maybe you're looking for a second opinion. Tillie is absolutely right. You described no ALS at all. Your doctors know what they're doing.

It may take awhile to get your meds just right, but it's really worth it. Persevere. Don't waste your time looking at ALS, and don't waste ours, either.
 
Thank you Tillie and Atsugi!
I appreciate your quick and straightforward answers and am posting again only because of a recent puzzling development.

As of 3 days ago I'm experiencing great difficulty swallowing, which has become persistent no matter my mental state. My throat feels constricted when I try to swallow and I have to be careful to get everything down and avoid aspirating food. This is not like the perceived difficulty I felt during bouts of anxiety, in fact the anxiety is getting better gradually.

Chewing also became more difficult at the same time, and both sets of muscles seem to tire easily after eating part of a meal.
I'm reassured by the fact that I CAN still carry out these movements, as well as the fact that I have no slurred speech or breathing difficulties to date. At the same time I'm concerned with the gradual but relatively fast progression of the symptoms– unfortunately, I'm relatively uneducated about neurological conditions and so bulbar onset is the only one I know of that moves at this sort of speed.

I realize it's unhelpful to continually ask the forum to reassure me "you do not have bulbar onset," so that's not what I want to do– instead, here's my question:
How quickly can symptoms come on in bulbar onset? I read in the stickies that suddenly, one day, a muscle stops working on command, and that is that. Does that mean ability to swallow, speak clearly, etc. is lost in one fell swoop, or over the course of several days, etc?

Alternatively, say the word and I will leave this thread/board.
 
I understand your pain, but we must really move on. Direct your questions to your doctor.
 
In the month since I wrote the original post, a couple of things have happened:
-with family and neurologists' help I have realized I experience intense health anxiety, and am currently seeing a psychiatrist.

- my difficulty swallowing has become chronic, as well as jaw fatigue that makes it difficult to finish meals. I feel bits of food and mucus get stuck on the back of my throat, so I feel on the edge of aspiration most of the time.
A week ago I started noticing a different sound to my voice, and a different feeling- reminiscent of times I've been a bit drunk. I have to work harder to avoid garbling words, and I seem to be stumbling over sounds like s, th, f, t.

So far no one says they notice a speaking issue.

Without the anxiety component, how concerned about this should I be? I cannot pretend to know the true nature and variability of bulbar symptoms unless I'm experiencing them.

In other words, I have hypochondria. I have a number of symptoms that could be phrased to sound like symptoms of ALS. I'm sure some hypochondriacs here and there have developed ALS, even if hypochondria is a more likely explanation.

It's a shame I seem to be without wisdom- unless there's a reason for concern, this post may not merit the use of your time.
 
Light,
I don't read any reason to believe that you have both ALS + health anxiety. Swallowing and speaking are both affected by muscle tension, which in turn is mediated by anxiety.

I very much believe that if you continue to work with the psychologist and optimize your medication regimen as well, you will soon be much less conscious of and therefore less concerned with these functions.

Best,
Laurie
 
Thank you, Laurie!
I also have stiffness in my hands, face and neck, that had been steadily worsening for about 2 months.
I also feel a constant need to cough or clear my throat due to the stuff stuck back there, and have been breathing slowly because faster breaths feel like I'm about to aspirate. I don't know if this is weakness or just stiffness of the muscles.

I realize that the diagnosis of this can only be left to my doctors.
I think it's most likely something else, due to my age, doctor visits I've had recently, and the fact that the fasciculations happened without apparent clinical weakness. Still, I don't know if anyone has evaluated my voice or the muscles in my head. If not for health anxiety, would this be worrisome?
 
Hello Lazer-
Many mood affecting meds can also cause a variety of physical symptoms as well- jaw clenching being a huge one, as well various twitches and zaps. Let your physicians know your symptoms, with an eye towards drug side effects instead of disease. It can take a long time to get the meds right.

Everyone has weird physical feelings on a daily basis. Hypervigilance can make these seem like huge signs of disease, when they are totally normal. Stress exacerbates the issue.

All the experts agree, you do not belong on an ALS board- it's not an appropriate place for you to be asking health related questions. You are doing so great with dealing with your anxiety with your gp and psychiatrist.
 
LaserLight, please understand that the people responding to you are taking you seriously and taking the time to compose a proper, useful response. That time takes away from the time we have available to assist the paralyzed and dying people this site is meant for.

You symptoms are important, but they are not ALS.
 
Status
Not open for further replies.
Back
Top