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Suggest Symptoms And Treatment For ALS

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Posted on Mon, 6 Oct 2014
Question: Hello,

I am a 36 year old female with a history of hysterectomy due to endo, 2 (supposedly false ANA tests 3 years ago), in which they did check for other auto-immune disease and I had none, 2 years ago had a severe case of Lyme's disease. Ever since the Lyme's disease I had occasional numbness in left side of face. Doctor's always said that it was "residual" from Lyme's. I also have always had MANY fasciculations (twitches) in my legs after working out for as long as I can remember. I also have a history of skin lesions that they diagnosed as segmental neuromas. I seem to have these rubbery nodules all over various areas of my body that have been diagnosed as lipomas or possible neuromas, but the doctors do not seem too concerned about it. I do have a history of anxiety, but lately (as I will describe in a second), it has been very bad. In July, I had a twitch in my knee that started and stayed for about 2 days straight. I hadn't thought much about it. As days went on, I had more twitches that had arisen in my legs, arms, shoulders, eye, lip, feet, back, and butt. I have been to the doctor three times and he said all my blood tests are normal. He said my reflexes and strength are also normal. (No babinski sign and my knee reflexes are strong, but he said it is within normal range, (my family's are the same as mine) and they are equal on both sides. My strength is actually better now than it was 2 months ago because I have been (crazily) testing it...walking on my toes/heels, no problems typing opening things, and I regularly hike up into our bluffs. I am in excellent physical shape I am 5'6" / 135 lbs. and have never had these twitches at rest before. It is like popcorn, one pop here, one pop there. I do not drink alcohol or caffeine and my electrolytes tested normal. I am also experiencing hemifacial spasms on my lower right lip and sometimes now on the left side. Nothing in the mouth or tongue. No atrophy. I was prescribed .5 ml of Lorazepam 3x per day and it helps TREMENDOUSLY with the twitching, but I do not want to be on this drug as I know it is highly addictive. I do not do well with SSRI's as I had been diagnosed as slightly ADHD in adulthood and I think SSRI medication just reacts with me badly...feels like speed, same reason I have difficulty with caffeine. Up until now, I barely took an asprin, much less this stuff. I startle extremely easily and my husband says when he wakes me up, I startle terribly as well. The doc has me scheduled for an EMG (I think mostly to ease my mind) in October. I am scared as heck. I have been researching my brain off. I know I am generally an anxious person, however, I have been anxious all my life and have never experienced this type of muscle twitching, (kind of like how your eye does), in all my 36 years. Sometimes I get little feelings of "bubbles" under my skin on my torso, but have always had those. I also seem to be achey at times, but no weakness at all. I tested positive on my ELISA again for Lymes, but negative on the follow up tests, so my doc says Lyme isn't the problem...A few nights ago I had what felt like really bad heartburn, it radiated to jaw, back and chest-but it was gone by next morning...this occurred after all these other symptoms started. I do have a family history of stroke (mom at 47 with blood clot in her brain and two subsequent since), and my 19 year old daughter has tremors. In your professional opinion, does this sound like it could be the start of ALS, or does this point to something a little less sinister?
doctor
Answered by Dr. Jonas Sundarakumar (1 hour later)
Brief Answer:
Symptoms not indicative of ALS.

Detailed Answer:
Hello and welcome to Healthcare Magic. Thanks for your query.

I understand that you are very worried about your recent symptoms and are worried whether you could be having ALS. Now, I have gone through your clinical history in detail and I'm of the firm opinion that your symptoms are not indicative of ALS. My opinion is that the twitching is likely to be anxiety-related. It is important to understand that anxiety can present with not only psychological symptoms but also with physical or somatic symptoms. Muscle twitches are indeed not uncommon in anxiety disorders. Often what happens is that these physical symptoms tend to get the person even more anxious and worried and the person sort of becomes "hypersensitive" to bodily sensations. This anxiety in turn worsens the physical symptoms and leads to a vicious circle of problems.

Your neurological examination, including the motor system (power, reflexes,etc.) is none of the other evaluations point towatds a neurological cause. The fact that you have seen tremendous inprovement with Lorazepam (an antianxiety medication) again confirms that it is likely to be anxiety-related problem, rather than any sinister neurological problem.

If you are worried about the habituation risk of Lorazepam and do not want to take SSRIs, then you can try Pregabalin or Gabapentin. These have both antianxiety and muscle relaxant propertoes. There are also several psychological techniques and relaxation therapies, for example, progressive muscle relaxation, applied relaxation, biofeedback, etc. which can yield effective and long-lasting results. Additionally, you can also try simple relaxation techniques like deep breathing, yoga, etc. which can be quite helpful.
Regular physical exercise helps in relieving both the physical as well as psychological symptoms of anxiety and also helps you stay more functional.

Wish you all the best.

Dr. Jonas Sundarakumar MBBS., DPM., MRCPsych.(U.K.)
Consultant Psychiatrist

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Jonas Sundarakumar (1 hour later)
Thank you kindly for your answer as I am hopeful that it is not ALS. Sometimes these twitches happen when I am most relaxed though, and not really thinking about anything. AND if I don't take the lorazepam, the twitches go NUTS...almost like it's a rebound affect. I can tell right away if I have not taken my medication. So what you are telling me, is that if it was ALS, the medication would not really help all that much right? One more thing, the twitching in my lip feels a little different than in the rest of my body...whereas the body twitches are a "pop" here and a "pop" there, (various places)...the one in my lip is more like a squeezing/pulling sensation that I can visibly see and is irritated when I pucker my lips. It happens on it's own if I don't take my medication, (at times), but I can make it happen if I pucker my lips. My dentist told me that my bone has grown larger on the bottom side of my jaw from grinding my teeth at night. (He said that can sometimes happen)...but the lip spasms have been the only ones consistantly in the same place for well over a month...could this be related to grinding my teeth? I just had that side of my teeth ground down in the timeline of when that particular twitching started...Also, I would like to note as a person that has anxious tendencies...that my anxiety was down when the twitching started...but the more I twitched the more anxious I then became...From what I have read ALS typically does not present with random twitching all over the body right? I know that I can actually see the twitches and have shown my husband these random twitches...I know I have a follow up question or two, so I just want to make sure that I ask everything that I am thinking, thanks so much...
doctor
Answered by Dr. Jonas Sundarakumar (13 hours later)
Brief Answer:
Clarifications given...

Detailed Answer:
Hello again,

I would like to reassure you once again that the twitches that you are experiencing are definitely not suggestive of ALS. The twitch in your lip (which you say is qualitatively different) could probably be getting worsened by your dental issues, but still, I don't think it's anything serious to worry about.

What often happens with anxiety is that once you notice a physical symptom (for example twitching) and start getting worried by it, your anxiety increases further and then you unconsciously start "monitoring" yourself. This actually increases your body's sensitivity to sensory stimuli and this can in turn increase your physical symptoms itself.

One good way to reduce your twitches (in addition to anti-anxiety medication) would be to try JPMR (Jacobson's Progressive Muscle Relaxation) which can relieve muscle tension and help you stay relaxed.

Regards,
Dr. Jonas Sundarakumar MBBS., DPM., MRCPsych.(U.K.)
Consultant Psychiatrist
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Jonas Sundarakumar (2 days later)
Good morning,

So I had my doctor appointment yesterday and we discussed thoroughly every single thing in my history, (2 previous positive ANA tests 3 years ago that were never confirmed to be anything), the fact that I have had arthritis in my hands and feet for over 10 years, my previous Lyme's diagnoses 2 years ago, etc...he put me on 2 weeks of doxycycline mostly as a measure to make sure that it isn't that, and I have a follow up to see him to see is there is any improvement. He also switched my meds to a longer-acting benzo (clonzazepam), because he said I can take less and have a similar result. He did some more reflex tests and said that I have an unusual reflex called the "cogwheel" reflex. I showed him how I can pucker my lips and cause my lip to twitch. He said that this is typically related to Parkinson's. My grandmother had Parkinson's, (she also had a mild form of neurofibromatosis which I also have mildly ironically). My doctor said that he is going to run a bunch of other blood tests because autoimmune diseases can "mimic" neuro or affect neuro stuff. He also said the three things he was most concerned about was lupus, ms, and parkinsons. But from what I have "googled," there doesn't seem to be a clear link with those and the fasciculations. My doctor still believes 100% that I do not have ALS. He has me set up for an EMG, (that was prior to this appointment), and now also for an MRI of the brain. He drew blood for paraneoplastic stuff, ANA, lupus type disorders, syphilis-(which I am not in the least worried about, but he wanted to do it as precaution), a complete protein panel, a complete thyroid panel, among others. What are your thoughts? Still no ALS with cogwheel added into the mix? Also could cogwheel be caused by benzos? Thanks so much, your advice has been very helpful and I took it to my doctor and he was thankful for your input as well...
doctor
Answered by Dr. Jonas Sundarakumar (19 hours later)
Brief Answer:
Still, ALS is not a possibility...

Detailed Answer:
Hi,

It's good to hear that your doctor is being systematic and is evaluating you extensively. Well, the "cog wheel rigidity" that your doctor has picked up is not a clinical feature of ALS. So, I'm pretty sure that you do not have ALS.

Cog-wheel phenomenon is a feature of Parkinson's, but you don't seem to be having any other features like tremors, slowness of movements, gait disturbances, etc.

It's a good decision to change your benzodiazepine to a longer acting one, namely Clonazepam. And benzodiazepines do not cause cog-wheel rigidity, so you needn't worry about this.

You're right in saying that none of the possibilities such as Lupus, Multiple Sclerosis or Parkinson's have a clear link with fasciculations. Anyway, let's wait for the results of the all the tests (I'm sure they're very comprehensive) and then take it from there. But I'm still of the opinion that there's nothing serious or sinister going on. So, don't get worried too much.

Best regards,
Dr. Jonas Sundarakumar MBBS., DPM., MRCPsych.(U.K.)
Consultant Psychiatrist


Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Jonas Sundarakumar (2 hours later)
Great news! I talked my doctor into giving me doxy....my twitching has already subsided! I am firmly believing this is stemming from lymes! My arthritis is better this morning too!!!!
doctor
Answered by Dr. Jonas Sundarakumar (1 hour later)
Brief Answer:
Great news indeed!

Detailed Answer:
That's great. I'm sure that must've felt really relieving. How many days of Doxy have you been put on? It's very important that you take the full course without skipping a single dose. I would advise you to continue the Clonazepam also for a short while and once you're completely well, you can taper it down and stop. It's also important that you take your meals on time and avoid spicy or oily stuff, because Doxy can sometimes cause gastric irritation and nausea.

Best wishes,

Dr. Jonas Sundarakumar MBBS., DPM., MRCPsych.(U.K.)
Consultant Psychiatrist
Note: For further guidance on mental health, Click here.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Dr. Jonas Sundarakumar

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Suggest Symptoms And Treatment For ALS

Brief Answer: Symptoms not indicative of ALS. Detailed Answer: Hello and welcome to Healthcare Magic. Thanks for your query. I understand that you are very worried about your recent symptoms and are worried whether you could be having ALS. Now, I have gone through your clinical history in detail and I'm of the firm opinion that your symptoms are not indicative of ALS. My opinion is that the twitching is likely to be anxiety-related. It is important to understand that anxiety can present with not only psychological symptoms but also with physical or somatic symptoms. Muscle twitches are indeed not uncommon in anxiety disorders. Often what happens is that these physical symptoms tend to get the person even more anxious and worried and the person sort of becomes "hypersensitive" to bodily sensations. This anxiety in turn worsens the physical symptoms and leads to a vicious circle of problems. Your neurological examination, including the motor system (power, reflexes,etc.) is none of the other evaluations point towatds a neurological cause. The fact that you have seen tremendous inprovement with Lorazepam (an antianxiety medication) again confirms that it is likely to be anxiety-related problem, rather than any sinister neurological problem. If you are worried about the habituation risk of Lorazepam and do not want to take SSRIs, then you can try Pregabalin or Gabapentin. These have both antianxiety and muscle relaxant propertoes. There are also several psychological techniques and relaxation therapies, for example, progressive muscle relaxation, applied relaxation, biofeedback, etc. which can yield effective and long-lasting results. Additionally, you can also try simple relaxation techniques like deep breathing, yoga, etc. which can be quite helpful. Regular physical exercise helps in relieving both the physical as well as psychological symptoms of anxiety and also helps you stay more functional. Wish you all the best. Dr. Jonas Sundarakumar MBBS., DPM., MRCPsych.(U.K.) Consultant Psychiatrist