Terrified

[Missb89]

I have avoided posting in this for him for over a year, because I do not want to be a nuisance, but I am terrified. Over a year ago I noticed myself falling more frequently, especially when I would try to stand on one leg to put my pants on. I'm now noticing that I'm walking more on the inside of my ankles, and it is wearing a pattern into my shoes. My left leg also feels weaker than my right. And a few months ago I noticed fasciculations in the same spot in my left calf. A few months ago I was put on the benzodiazepine Klonopin, and and while trying to come off of it and now having extreme neurological reactions such as tremors in my legs and head. I am scared that I already had underlying ALS for this past year and it trying to get off the Clonopin is exacerbating the situation. I extremely scared because I'm only 26 years old and I'm a single mother to a five-year-old.

Has anyone had an onset with their ankles where it started out with falling over and then walking on the inside of their ankles? I am going to try to figure out how to post a picture of my shoes so that you can see the pattern that I am talking about. I am due to see a neurologist soon to my primary care doctor needs to make the appointment, but I can't stop freaking out.

I'm also afraid to try to come off of the Clonopin anymore as to make the neurological issues worse. I had also read that I hypothesized cause of ALS could be neurotoxicity of glutamate, and I know when you go through benzo withdrawal there are surges in glutamate. So I am scared that if I don't already have ALS that I am going to give it to myself from going through these withdrawals.
Any input would be greatly appreciated thank you.

 

[Atsugi]

You have understandable concerns. My wife's first symptom was falling over sideways when she squatted to look at a bookshelf. She was 50.

But I wouldn't worry about ALS if I were you, for several good reasons.

First, ALS is rare. Your symptoms could be from many, many other conditions. If you must worry, worry about more common non-fatal diseases, most of which are treatable.

Second, your age. I recently saw a database of 1800 patients with ALS. They're in their 50s and 60s. Only 3 people were in their twenties, and none as young as you. So if you have ALS, you'd be the exceptional person in a rare disease. What are the odds? The odds are good that something else is causing your symptoms.

I'm not an expert, nor a doctor, but I've been reading ALS experiences daily for several years. I've never heard of Clonopin or quitting Clonopin giving someone ALS. Your doctor would certainly know more about that. See your GP and follow her advice.

Finally, there is nothing you can do while waiting for your neuro. If it is ALS, you can't change that. Catching it a few weeks earlier won't change it. I don't mean to be morbid, but from a practical point of view, if I was worried I had a fatal disease, I would get life insurance first (without medical exam), while I could honestly say I'm generally healthy on the questionnaire. If you can't possibly afford insurance, you could cancel it once you get a diagnosis of something else. Every single mom should consider life insurance.

You fell over without explanation. You were wise to look into that. But there are hundreds of non-fatal conditions you might have that are more common than ALS. Worry about those, instead of ALS. Perhaps you could ask your GP to treat your anxiety. Talk to her. Good luck.

 

[Missb89]

Thank you for your reply. I do have flat feet so maybe that aided in my week ankles and instability. Unfortunately withdrawing from a benzo like Klonopin is an extremely painful process and many of the symptoms can mimic serious neurological disease so I am dreading the process. I know it will only amp up my health anxiety 1000%. I will have to find an alternative therapy for anxiety because for me personally the risk of staying on the benzo outweighs the benefits. Now I will try to stay calm until I see my neuro which is easier said than done. Again, thank you for your response and I am sorry you had to deal with this terrible disease with your wife.

 

[lgelb]

You cannot get ALS from coming off Klonopin, but as you note it can cause other symptoms, so you should certainly do that under supervision, gradually lessening your doses. The side effects from taking it/coming off it could easily explain a change in your walking pattern, but so could old shoes, stress, an imperfect diet, lack of sleep (and single moms often have several of those) or a lot of other things that could have preceded your going on it. Don't be afraid -- it is very unlikely that you have a neurological disorder.

If you are not already on an SSRI, or low-dose trazodone or another TCA, you might discuss that with your PCP, to bridge getting off the benzo.

 

[Missb89]

Well the fasciculations that I noticed in my left calf in March, prior to starting benzodiazepines are back and really freaking me out. Saw a neuro yesterday for all of 10 minutes and he didn't even test my strength or reflexes? He just said we can order a brain Mri to check for ms, and nerve test for als. I felt like he should've done some type of exam but all he did was take my blood pressure. My left side both leg and arm feel weaker than the right. I'm really scared and disappointed in the appointment.

 

[Atsugi]

No doubt you already know that fasciculations can be anything, or nothing at all. And you know that "feeling weak" really doesn't count toward ALS. My only concern from your first post was that you said you fell over for no reason.

I'm sorry you weren't satisfied with your neuro appointment. It's frustrating when you don't know what's going on.