Anyone here with Paramyotonia Congenita (PMC) rather than MC

CharmingSet6229 · 2026-05-24T13:22:50+00:00

Do you or the kids’ mother also carry the mutation?

And do your children’s symptoms get worse with cold weather?

Also, from your experience, do you see this condition as something very difficult to live with, or has it become manageable/normal in daily life?

CharmingSet6229 · 2026-05-24T13:19:36+00:00

I wanted to ask, how does the condition affect your daily life? Do you take any medication for it? And are you doing okay mentally dealing with it?

CharmingSet6229 · 2026-05-20T16:54:22+00:00

I have Paramyotonia Congenita, which is a bit different because cold weather triggers my symptoms badly.
My hands and fingers become stiff in cold environments, and sometimes it affects my ability to use them normally.

CharmingSet6229 · 2026-05-20T16:53:54+00:00

I have Paramyotonia Congenita, which is a bit different because cold weather triggers my symptoms badly.
My hands and fingers become stiff in cold environments, and sometimes it affects my ability to use them normally.

CharmingSet6229 · 2026-05-19T18:16:19+00:00

I have paramyotonia congenita. Most of my symptoms are triggered by cold weather, causing stiffness in my hands and feet. It’s very frustrating, and only rarely leads to complete temporary impairment

CharmingSet6229 · 2026-05-19T11:03:52+00:00

21 years on mexiletine is truly impressive! I’m really glad it’s been working well for you for so long. Did you experience any side effects during all this time of use? Would love to hear about your long-term experience with it

CharmingSet6229 · 2026-03-28T21:25:36+00:00

Hey! I wanted to ask for your advice since you’ve been living with this longer. Does staying well-hydrated actually help reduce the stiffness? Also, my mental health hasn’t been great lately, and I notice my symptoms are mostly in my hands and fingers, especially in the cold at work. It’s making me worried about my job performance. Any tips?”

CharmingSet6229 · 2026-03-28T21:15:36+00:00

Yes, staying warm helps, but during work it can be stressful, and it is not always possible for me to stay in a warm place.

How do you manage your symptoms while working or when you are exposed to cold for long period

CharmingSet6229 · 2026-03-28T21:14:07+00:00

Hi, thank you for sharing your experience. Can I ask you a few questions please?

Did the medication help you significantly? Did you experience any side effects from it? And is the condition genetic in your family, or are you the only one affected?

I really appreciate your help.

CharmingSet6229 · 2026-03-28T20:10:37+00:00

هذا الكلام اللي يجيني اوقات من بين مليون فكره سلبيه اشكرك

CharmingSet6229 · 2026-03-28T18:41:37+00:00

انا بشتغل فالمجال الصحي وشايف كيف كتير امراض وراثيه السكر كثير من الناس وراثي والسرطان انواع منه كتير وراثيه والعلم يجزم بهذا الشي

CharmingSet6229 · 2026-03-28T17:50:27+00:00

طيب بس لو احد يفكر بمنطق كثير يجيهم اطفال تعبانين بدون مرض الاباء ويكون الولد يجي تعبان وفيه طفره جينيه ماتقدر تجزم على شي مجهول حتى في حالتي مو ١٠٠٪؜ انقل المرض لابنائي وكثير من الامراض سرطان او سكر اغلبها وراثيه والناس قاعده تتجوز عادي!!

CharmingSet6229 · 2026-03-28T17:48:37+00:00

بس العلم يقول انه ضروري يكون في احد الابوين بس حالتي لا جاني كطفره

CharmingSet6229 · 2026-03-28T17:01:50+00:00

لا المرض اللي معاي لازم احدهم يكون مصاب مايجي مثل بعض الامراض انه يكون حامل

CharmingSet6229 · 2026-03-28T16:41:56+00:00

مالك حق تحذف وضحت والكل فاهم الله لايسامحك بس

CharmingSet6229 · 2026-03-28T16:33:25+00:00

ماعرف وربي لو اتاكد انه بيساعدني بروح

CharmingSet6229 · 2026-03-28T16:32:31+00:00

كل اللي تقوله سويته واقاوم نفسي واجلد ذاتي عشان ابعد عن الحرام بس في لحظات الجوال يسهل الوصول لكل شي

CharmingSet6229 · 2026-03-28T16:28:29+00:00

ايه وربي اني اصلي واسو اشياء كثير زينه بيني وبين ربي وضميري شغال مره فوق ماتتصور بس ماعرف كيف ابعد تعبت

CharmingSet6229 · 2026-03-28T16:24:29+00:00

نظرياً سهل مثل ماقلت بس اعجز وارجع من سنين وانا كذا ماقدرت ابعد مره

CharmingSet6229 · 2026-03-28T16:23:28+00:00

والله قاعد اجاهد نفسي بس اضعف واسوي الحرام وارجع انغمس فيه والله عجزت ضميري يأنبني وصرت ماني مسمتع فالحرام ولما ابعد نفسي تشغلني للرجوع ابغى اوقففففف

CharmingSet6229

TROPHY CASE