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Confessions of a twitcher

Suevmd

New member
Joined
May 24, 2019
Messages
2
Reason
Learn about ALS
Well, I’ve been on a roughly 6 month journey of various symptoms that are shared by many who post on this “Could it be ...” thread. A brief history. I have had MS for 18 years. Confirmed and second opinion at Northwestern. Lucky for me my MS has been silent or benign both symptom wise and on serial MRIs. Phew. Oddly enough I’m not super anxious about the disease that I do have. Hmmm

My current symptoms of muscles fasciculations started after a very stressful 6 months leading to a penultimate evening of family stress centered around a siblings illness. I started twitching, a lot. Mostly calves, but other areas too. I made the worst mistake of my life and googled fasiculations and atrophy (I had unfortunate posterior deltoid atrophy from an ill placed tetanus injection). I immediately went into the rabbit hole of ALS. Fasiculations would be an extremely rare symptom with MS. I have had mild health anxiety over the years, but nothing that could not be remedied by short passage of time or a trip to the doctor.

Extremely long story, shortish recounting, I saw my neurologist (who actually happens to be a neuromuscular specialist) who manages my MS. I have a very good relationship with her. I saw her twice in about a month as my anxiety over fasiculations, cramping, perceived weakness all got much worse. I started seeing a CBT psychologist right away as well. I’ve never had generalized anxiety either, but I guess , welcome to perimenapause. I saw a rheumatologist as my symptoms morphed into joint and muscle pain ( symmetric multiple joints) and was cleared of inflammatory type arthritis. All the while, the weakness seemed so very real. The fasiculations persisted and I was certain that I had ALS. This fear took 6 months of my life. I had planned my decline, disability and demise on a nightly basis. I missed out on so much joy in my life, my kids’ lives and my poor husband had to worry. Honestly, other than the initial diagnosis of MS 18 years ago, I have led a very full normal life with that disease. It was just so ironic that my actual disease has impacted me so much less than my health anxiety over ALS.

With therapy and a re-evaluation of diet and lifestyle, I’ve clawed my way out of the rabbit hole. Headspace has a great 30 day program on anxiety that helped me to let perseverations over body sensations just pass me by.It was not a linear improvement. I had ups and downs. My anxiety and sleep are returning to normal. I still have fasiculations, cramping and weird muscle fatigue and burning. I still have odd physical sensations. I still feel weak and test my muscles. The difference is that I try not to dwell on them or always see them as harmful. I try not to stare at body parts or measure circumferences of limbs. I’ve done it all. Yikes!

I learned a lot from this forum and spent quite a bit of time here. My guess is that I read the intro sticky at least 100 times in 6 months. When I wanted to post my symptoms, I would read the sticky. I had my lowest times in my life in the last 6 months.

I saw my neurologist for my regular follow up a few days ago. She and I stay in touch outside the office and she has been so helpful with my anxiety. Having your neurologist’s cell phone number is the absolute definition of a double edge sword. It was really difficult to not vomit anxiety all over her every day. I did have a few times when my anxiety won out. At my neuro appt, I still had some lingering doubts about having ALS. I had always trusted her when she told me that I did not need an EmG after two normal neuro exams. I felt like I had done enough work on my anxiety and asked if we could go ahead with the EMGs (which were normal). I’ve learned with health anxiety that reassurance is like candy, you just burn it up in a few hours. When I was in the midst of being SO SURE that I had ALS, I resisted posting on this forum because reassurance is just the currency of health anxiety.
I hope that I can help someone get through this anxiety and move forward. It is not worth it. Get checked out medically, stop googling and move on. I know it feels real. If you told me a year ago that anxiety would steal 6 months of my life, I would not have believed you.

My best to all in this forum. To the PALS and CALS, keep on keepin’ on. You have been invaluable in my journey and the work you do to help those with ALS or fears of ALS is a tremendous service. I know there will be some hiccups along the way, but I’ve given myself some hard fought tools to deal with this. Gather ye’rosebuds, carpe diem.
 

KarenNWendyn

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Moderator
Joined
Jul 29, 2017
Messages
1,959
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
I still feel weak and test my muscles.
Thanks for posting to reassure others

As far as testing muscles, etc. Don’t!

IMHO, that would be like an alcoholic insisting that having one drink is ok. It’s not.

Severe health anxiety is a chronic illness. You can get it under control with help and hard work, but the risk of relapse is huge and it requires life long effort to keep it under control. Testing your strength, reflexes, etc pushes you back into that realm. So does continuing to lurk on this forum.

My advice— celebrate your health, move on, and don’t look back.
 

lgelb

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Moderator
Joined
Nov 5, 2009
Messages
7,336
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Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Thanks for posting. It does help others.

Possibly your time worrying about ALS has been in part another form of wondering if/how the other shoe will drop on your thankfully slow MS progression. It is not unusual for that kind of thing to happen.

I'm glad you have a neuro you trust, and wish you all the best.
 

Suevmd

New member
Joined
May 24, 2019
Messages
2
Reason
Learn about ALS
Thank you. I don’t know what the future brings except no lurking on this forum and no muscle testing ( heard you loud and clear). Health anxiety is a super slippery slope that I want to do my best to avoid even with some new anxiety tools in the toolbox.

My best to you as well.

Sue
 
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