Does anyone with these conditions get excruciating fatigue where even breathing feels heavy and it’s scary. Sometimes it feels like your not breathing and I am super quiet and almost out of it but your hr is Normal?
Thanks so much
Hi there!
I am on ivig I do 50mg 3 weeks out of each month and I’m on my 4th month. I was feeling so match stamina in month 2-3 still tired but stamina and About 3 weeks ago I got an endoscopy done and after that my stomachs been a mess, I’m extremely sore and tired. My arms and legs tire very quicky when upright and that stamina is gone. Is the ivig not working? Or am I just getting worse and worse?
Hi there!
I am on ivig I do 50mg 3 weeks out of each month and I’m on my 4th month. I was feeling so match stamina in month 2-3 still tired but stamina and About 3 weeks ago I got an endoscopy done and after that my stomachs been a mess, I’m extremely sore and tired. My arms and legs tire very quicky when upright and that stamina is gone. Is the ivig not working?
Anyone choke on liquid sometimes or have to clear throat easily? I am terrified I have ALS lol
Does anyone have trouble when they are eating things it’s like hard and feels like it’s dry and gets stuck easy? I’m terrified I have ALS now and I’m scared that it’s a muscle problem but I’ve had a clear
Leg Emg and my neuro thinks I’m being ridiculous
I have pots and Sfn does anyone feel like their legs are heavy when walking and sore?
I’m really trying to find a cause and treatment for my Sfn. This is my history:
Childhood: oral allergy syndrome symptoms (itchy mouth with peaches and similar foods).
2013: severe anorexia with weight loss to 88 lb and loss of menstrual periods for over a year.
2015–2016: significant GERD.
2016: endoscopy showed GERD and eosinophilic esophagitis (not recognized at the time); treated with Zantac.
2019: stopped Zantac after withdrawal from the market; increase in panic attacks.
2020: recurrence of esophageal symptoms; pantoprazole started. Transient POTS-like symptoms beginning in March that resolved by October.
Late 2020–2023: largely normal function with occasional exercise-related dizziness but able to work, exercise, socialize, and live normally.
2023: worsening stomach symptoms, recurrent UTIs, increasing anxiety.
January 2024: COVID infection and recurrent UTIs.
March 2024: abrupt onset of persistent POTS/dysautonomia.
Winter 2024–2025 onward: increasing fatigue and symptoms leading to objective diagnosis of small fiber neuropathy and treatment with IVIG
Do you think I will have Sfn forever and it will just continue getting worse? I’m currently on ivig to try and help but I’m scared it’s not going to help and we can’t find a cause of it.
I have pots and Sfn and lately I’ve been getting these random brain zaps like all of a sudden in split .2 seconds a zap in my head and my head feels like it’s going to explode and my ears are super full and idk what it is it happens so randomly
I have pots and Sfn and lately I’ve been getting these random brain zaps like all of a sudden in split .2 seconds a zap in my head and my head feels like it’s going to explode and my ears are super full and idk what it is it happens so randomly
I got an endoscopy 2 weeks ago for eoe and since then I’ve been in a terrible flare I have pots and small fiber neuropathy and my eyes are so tired, my muscles are achy and so fatigued, I’m pale, my ears are full, and I’m so nauseous, my legs randomly spaz, and my head has a random sharp pain that’s not terrible just brand and I sometimes get this weird zaps in my brain that happen out of no where and don’t want to eat. I don’t know what to do to get out of this and is it from my dianosis or is this new?
Does anyone else get severe fatigue feeling like you’re so exhausted that you’re dying. I swear I get so nervous. I have pots and small fiber neuropathy
Hi!
When walking up stairs my heart rate will raise to 170 and I’m so out of breath and then I sit down and it falls to 48-50 and it feels awful like my heart is stopping than after about 5 min it normalizes around 60. Does anyone ever get like this? How do you fix it?
Thanks in advance!
Does any one get weird sensations of weakness or like your hand isn’t “there” in a sense?
Hi!
When walking up stairs my heart rate will raise to 170 and I’m so out of breath and then I sit down and it falls to 48-50 and it feels awful like my heart is stopping than after about 5 min it normalizes around 60. Does anyone ever get like this? How do you fix it?
Thanks in advance!
Hi!
When walking up stairs my heart rate will raise to 170 and I’m so out of breath and then I sit down and it falls to 48-50 and it feels awful like my heart is stopping than after about 5 min it normalizes around 60. Does anyone ever get like this? How do you fix it?
Thanks in advance!
I have a question, March of 2024 out of the blue I started getting pots symptoms that have no subsided I live with them everyday and I also have small fiber neuropathy and high cytokines and a few other il markers. My doctor prescribed ivig and I’d like to know if anyone else has had this problem and if treated how? Am I missing something or will I have this forever? Thanks in advance!