u/Zealousideal4736

I'm getting horrible symptoms every day and just feel like I can't go on anymore. I feel like I'm getting worse each day. I feel hopeless. The numbness and dysautonomia get worse daily. I have numbness from head to toe and everything in between. I also have internal numbness and autonomic dysfunction. My Neurologist hasn't found anything to help me and this just keeps getting worse.

I developed all these issues after taking an antibiotic and B6 supplement 3 years ago. Since then, my life has been terrible. I've been basically bedbound since October 2025. Also, I have other conditions that developed along with this...MCAS, Dysautonomia, and Malnutrition/FTT. And I have hEDS, but that never caused issues until I took that antibiotic.

I feel terrible, every day is filled with flares and pain. Today all I did was try and get dressed. I stood up maybe 4 minutes and also did some organizing while sitting in bed (maybe 5 minutes). That was all it took for me to get sick. I felt dizzy, like I have no blood in my head, also had abdominal cramping, and lips got extremely dry, and my chest felt weird. Heart rate and oxygen were normal.

So, I went to lie down and raise my legs. That just made me feel much worse. I sipped on my electrolytes and drank almost the whole liter. Then of course I had to urinate. After I did that I honestly thought I would die. I've gotten vasovagal responses before, they started in November 2025. This just felt so much worse.

I don't know where to go from here or who to turn to. My Neurologist is supposed to be excellent, but I mentioned these things to him and he just shrugged me off. I literally can't stand up for more than a few minutes. This is all unbearable.

I'm only eating a handful of foods due to the MCAS and also drinking an elemental tube feeding formula. This all helps me to reach my calorie count. I had lost so much weight, but I'm finally at 110 lbs, but everything still feels so bad. I don't know what I'm doing wrong.

I'm getting horrible symptoms every day and just feel like I can't go on anymore. I feel like I'm getting worse each day. I feel hopeless. The numbness and dysautonomia get worse daily. I have numbness from head to toe and everything in between. I also have internal numbness and autonomic dysfunction. My Neurologist hasn't found anything to help me and this just keeps getting worse.

I developed all these issues after taking an antibiotic and B6 supplement 3 years ago. Since then, my life has been terrible. I've been basically bedbound since October 2025. Also, I have other conditions that developed along with this...MCAS, Dysautonomia, and Malnutrition/FTT. And I have hEDS, but that never caused issues until I took that antibiotic.

I feel terrible, every day is filled with flares and pain. Today all I did was try and get dressed. I stood up maybe 4 minutes and also did some organizing while sitting in bed (maybe 5 minutes). That was all it took for me to get sick. I felt dizzy, like I have no blood in my head, also had abdominal cramping, and lips got extremely dry, and my chest felt weird. Heart rate and oxygen were normal.

So, I went to lie down and raise my legs. That just made me feel much worse. I sipped on my electrolytes and drank almost the whole liter. Then of course I had to urinate. After I did that I honestly thought I would die. I've gotten vasovagal responses before, they started in November 2025. This just felt so much worse.

I don't know where to go from here or who to turn to. My Neurologist is supposed to be excellent, but I mentioned these things to him and he just shrugged me off. I literally can't stand up for more than a few minutes. This is all unbearable.

I'm not sure if any of your are Christian, but I try to have faith in God. I understand that things are permitted for our own eventual good and growth, but this is too much to bear. If it's not the MCAS reactions, it's the constant autonomic flares and worsening numbness. I feel like it's not at all possible to live this way. Each day I'm just trying to survive.

I'm getting horrible symptoms every day and just feel like I can't go on anymore. I feel like I'm getting worse each day. I feel hopeless.

I developed all these issues after taking an antibiotic and B6 supplement 3 years ago. Since then, my life has been terrible. I've been basically bedbound since October 2025. Also, I have other conditions that developed along with this...MCAS, Small Fiber Neuropathy, and Malnutrition/FTT. And I have hEDS, but that never caused issues until I took that antibiotic.

I feel terrible, every day is filled with flares and pain. Today all I did was try and get dressed. I stood up maybe 4 minutes and also did some organizing while sitting in bed (maybe 5 minutes). That was all it took for me to get sick. I felt dizzy, like I have no blood in my head, also had abdominal cramping, and lips got extremely dry, and my chest felt weird. Heart rate and oxygen were normal.

So, I went to lie down and raise my legs. That just made me feel much worse. I sipped on my electrolytes and drank almost the whole liter. Then of course I had to urinate. After I did that I honestly thought I would die. I've gotten vasovagal responses before, they started in November 2025. This just felt so much worse.

I don't know where to go from here or who to turn to. My Neurologist is supposed to be excellent, but I mentioned hypovolemia to him and he just shrugged me off. I literally can't stand up for more than a few minutes. This illness is unbearable.

I'm not sure if any of your are Christian, but I try to have faith in God. I understand that things are permitted for our own eventual good and growth, but this is too much to bear. If it's not the MCAS reactions, it's the constant autonomic flares. I feel like it's not at all possible to live this way. Each day I'm just trying to survive.

I used to love taking showers before I got sick. Now, I just dread them. I feel so sick after. Using a shower chair doesn't help either because the blood still pools in my legs/feet.

This morning I took a shower. I figured I would do it early before I had any symptoms. During the shower as I sat on the shower chair, my feet were basically purple towards the end. I tried raising them and wiggling them to get the blood flowing, but it only helped temporarily. After the shower, I had to just sit there and then I went to lie in my bed.

I felt absolutely horrible. I immediately got super dehydrated, felt dizzy, got abdominal cramping, and both arms felt weak and numb. I have never felt this bad before, but also I usually shower after breakfast and after hydrating. I couldn't even eat breakfast. I had to just lie in bed and sip on my electrolytes.

Does this happen to anyone else and can you please offer tips?? I'm struggling so much.

When do we consider a reaction actual anaphylaxis? I can't tell if it's just a bad reaction or a form of anaphylaxis.

When I get a very bad reaction, within minutes, I will have stomach swelling, swelling in my throat (not closing though and I can breathe), chest congestion/wheezing when coughing (no wheezing while breathing), some abdominal cramping. Oxygen is normal, heart rate is within range, blood pressure doesn't drop...sometimes it's normal other times it is elevated. For very bad reactions I get psuedo-seizures. My body is shaking and then I feel very cold.

I have reacted this way in the hospital and they just monitor me, usually within an hour it passes. They have never given me an epi pen because they say I don't have hives, throat isn't closed, oxygen is normal.

Soo when do we use an epi pen? Today I had a horrible reaction from eating a baked potato or possibly from garlic fumes. I took a second dose of Cetirizine. I really hate this illness so much. I have been reacting to many things lately. I don't know what to do. I'm currently taking Cetirizine, Famotidine 2x daily, and a Cromolyn Sodium Nebulizer 3x.a day.

I feel so lost and hopeless. My symptoms started in 2023 some time after I had taken an antibiotic (Nitrofurantoin) and also was supplementing with vitamin that had high B6. It started with just two fingers on my left hand and then both hands and both feet. Within a few weeks, the loss of sensation spread to my entire body.

At that time I had MRIs done at the ER and I only had two slightly bulging discs, but nothing that would cause all that. Time passed and my symptoms kept getting worse. I developed Dysautonomia and Mast Cell Activation Syndrome. My Neurologist also says I have early sjogrens. I was tested for lyme disease about 3 times and all were negative. I do have low ferritin and due to the Dysautonomia I am always dehydrated, but I drink about 1-1.5 liters of electrolytes daily.

Due to the MCAS and extremely limited food intake, I developed malnutrition and failure to thrive last year. I was hospitalized several times. The neuropathy seemed to have worsened last year and it keeps getting worse. Though at the hospital their tests showed I was fine and they discharged me. Now I have been eating food I can tolerate, but the small fiber neuropathy keeps worsening. I am losing more and more sensation of my skin and also internal sensations. I don't know what to do. I have explained this to my Neurologist and they have not been of any help at all.

I just feel so terrible, like my life is over and I'm just a shell of who I was. I can't do much anymore and things keep getting worse. No one knows what is causing this. Has anyone been through something similar?? I don't know what to do to stop it from worsening.