So, it's a little over a month since my last post, and thought I'd fill people in on how I'm doing.

After my last post, the urinary retention continued along with losing thirst reflex. I simply couldn't tell when I was thirsty. And while I tried to drink more water, I couldn't drink much and felt done early.

The end result? I eventually ended up with nearly brown urine (what little did come out) and serious case of dehydration. I nearly fainted when I stood up, and ended up in the ER with chest pain. They tested me and gave me a lot of IV fluids. I was discharged and told to hydrate myself more, required 2 liters of water a day whether I felt thirsty or not.

I continued to feel weak and exhausted and not at all like myself. But eventually I began to get the thirst reflex back, and drink like a normal human being.

That was about 3 weeks ago.

About 2 weeks ago, I noticed that a number of my symptoms I reported here a few weeks after my third shot had improved... I'm no longer getting severe headaches at the base of my skull. I slowly began to eat more solid food and my digestive system came back online, and I'm able to eat a normally portioned meal - but I do digest food better if I eat smaller meals more often during the day. I began to have bowel movements again when I wasn't, between not being able to eat and incredibly slow gut motility.

In terms of nerve pain, I'm rarely getting intense muscle and nerve pain in my legs (especially the upper thighs). 3 weeks after my third (and last) shot, I was able to walk around the block near my home a couple days a week and it took 20 minutes; when I got home I was exhausted and in pain and had to lie down. Now it's been nearly two months since my last shot, and I can walk several blocks, stop to take photos with my phone, and walk home in about 40 minutes to an hour and I am fatigued but there is not much pain. If I walk longer than that, I will get hip and thigh pain that's pretty intense. But this to me is a major improvement.

Something is still wrong. I am getting episodic joint paint in my hands and arms and legs, and I never had this before the shots. I get what feels like tendon pain/tendonitis randomly, too. I don't know what to do about it and I have appointment with a neurologist in the near future to discuss this and orthostatic hypotension.

I also feel like something is not right in my brain/breathing centers ever since I had the weird sensation within days of the shot where my ability to breathe voluntarily was affected. Because rabies virus attacks the brainstem, I suspect the dead virus is also found there, and affected me somehow. (I'd really like someone who researches this to tell me more about what I may have experienced; it's been the most disconcerting aspect of this post-vaccine hell.)

About a week after my last post, my titer test came back. It is 3.0. So in theory it's protective, but we all know from the fine print about what a protective titer is that it's a relative statement. However, no one really wants me to get the 4th shot given I reacted so badly to the first 3. The case rate in my area is super low, and we think we have seen the cat that bit me. The doctors originally were not going to give me the shots at all, and despite underlying medical conditions let me get them because my anxiety was severe and intractable when I went to the ER.

I also want to eventually get a COVID vaccine. And am afraid that I'm going to react badly to that, or possibly trigger something worse in me after this series of 3 shots in one week. It's hard to navigate this decision given what I've been through, and it's not clear how having a mast cell activation disorder affects it.

This is pretty long-winded, but I wanted to give a thorough update in case anyone wondered how I'm doing and in case anyone else would benefit from the sharing of my experience.

What I have learned that has really helped me echoes something someone else wrote here many posts ago: The anxiety can be severe with this situation, and it amplifies and worsens symptoms. It's important to find a way to tone it down, and focus on something other than the worst case scenario. The anxiety can create a vicious cycle that makes symptoms worse, which makes the anxiety worse, and then the symptoms worse.

I had to repeatedly tell myself, "It will be okay, a symptom means the shots are working - not that you are experiencing the virus" and then eventually a shorter "A symptom is just the shot side effect. Chill." It took many repeats in my head of doing this and pushing myself a little physically to do things around the house and take a walk (even if it hurt) for this to slowly improve over the course of a month.

Okay, all for now. :-)

I’m glad you’re hanging in there. Anxiety is definitively ely a factor!
I had a lot of joint pain especially in my hands. Icing and heating your hands can be helpful... At about month 6 post vaccine it began to subside for me and haven’t had that arthritis feeling since.

I truly hope you find some peace of mind during your upcoming appointment!

Can you give us an update. Are you better now. What about pins and needless. Did they gone with the supplements you took;

Hello,

I just found this post searching the web and I am going to describe my past and current symptoms. I had a 5-dose post-exposure rabies shot out of precaution in August 2020 and in September/October started feeling weird stuff in my body, which could be or could not be linked... but resembles in many cases what's described in this post.

• August 2020: stomach age, tiredness, feeling of unrest (24 hours post shots)
• September 2020: one marked episode of pins and needles in both feet, followed by sporadic heat sensation and tingling. Started getting numb feet randomly when sitting, that lasts to this day. Developed an urge to urinate for about two months. Tested STD, UTI, lots of other stuff, all came back negative.
• November 2020: had 4-5 sporadic episodes of tinnitus, lasting a few seconds, with a permanent onset early december. I'm sure this is muscular as pressing my jaw, flexing my neck, or other neck movements change the tone of the tinnitus. Checked with ENT doctor, tested outter, middle and inner ear, all normal. I developed a feeling of neck weakness and crackling.
• January 2021: persistent numbness in hands when waking up that subsided for the most part after moving them and numbness on feet when sitting, as well as random tingling in feet and arms.
• February 2021: began having fasciculations and tinglingall over my body, first in my left hand right dorsal, then left eye, then everywhere else: legs, arms, chest, cheek, you name it. They come and go, randomly, and have a high frequency. They don't hurt but are annoying. They last to this day. Then began noticing that my fingers had a slight tremor. When holding the phone on two fingers I began noticing my heartbeats more and more.
• March 2021: began having a feeling of weakness in legs and arms, especially hands. When doing exercise I noticed shaking upon applying minimal force (similar to when you try to hold a plank for a long time, just from the very beginning. Started in all 4 limbs at the same time, as well as neck. Super weird.
• April 2021: developed a new symptom - I feel like my body vibrates inside, especially when I lie in bed. It happens some time, it's as if my legs, arms and torso were shivering inside.

I've visited two Neurologists and a Neurosurgeon during this time, got a B12 prescription and multiple tests - full spine MRI, head MRI, all back normal except for some disc herniations without stenosis or nerve compression. Did lots of bloodwork for immune disorders and other, all came back negative.

I see that my symptoms match some of the previous ones posted here. I'm dismayed in that symptoms seem to be developing for the worse instead of getting better.

I plan on going again to the Neurologist and ask for a NCS and EMG since this seems to be the last tests that I'm missing. In general doctors pointed out at stress but I know my body well and I can totally tell there's something abnormal going on. I don't know if it's related to rabies vaccine but I didn't visit a doctor for anything related for the past 10 years and I can't think of any other relevant event.

I'll keep you posted with the developments.

Hi Atreides, thanks for sharing your story. I received 3 out of 5 shots in March 2018 (I decided to not get the last 2 shots because of the side effects). A lot of the symptoms you are describing are similar to mine. A feeling of numbness in feet if I sit in a particular position for some time. I wake up not feeling my fingers, which solves itself after shaking my hands for a few seconds. I had muscle twerks across my body. I also sometimes wake up with leg weakness and not being able to stand up for a minute or so. I have this feeling of arthritis in my knees and wrists. And many other symptoms that have come and gone. I stopped visiting neurologists in September 2019, because those consultations were not helpful in understanding what is happening. It has been 2 years now, and I can say that the symptoms have gotten less. It seems to be some kind of flaring up of the body from time to time. I can feel when the inflammation enters, and when it subsides. I hope your symptoms resolve over time!

My wife at age 56 developed a peripheral sensory neuropathy very similar to many others in this forum after receiving the Imovax and HyperRAB S/D vaccine following a bat bite. That was 4 years ago. Currently her symptoms are not as severe as they were in the first 12 month post vaccination but they do tend to flare up on occasion particularly at night.

My question—has anyone with a similar post-vaccine neuropathy received one of the COVID vaccines? She is very concerned about experiencing worsening symptoms and is leaning against COVID vaccination. She is otherwise healthy.

Thanks.

William

I had originally posted here but requested it be removed as I did not want to be an alarmist or deter anyone from getting this life saving vaccine if the needed it.

To answer your question, I had the Moderna Covid vaccine with no issue. I hope this gives your wife some peace of mind to move forward if she so chooses. I was concerned to get it but like the rabies vaccine I had to weigh the benefits with the risks.

I am not advising your wife one way or another to take or not to take the COVID-19 vaccine. I am just telling what happened to me after taking the first dose of the Moderna Covid vaccine 8 weeks ago. I never had any neuropathy whatsoever before the vaccine. I now have tingling and numbness in all 4 of my extremities and bulging veins in same. I have been to the ER, pcp, neurologist, and was put on gabapentin. In my research I came across this site and noticed the similarities between some people getting the rabies vaccine and then getting neuropathy and what happened to me. I find it comforting that Eventually most of the acute neuropathy cases on here calmed down. Looking back in 20/20 hindsight I personally would have not gotten the Moderna vaccine. Again. It’s an individual choice and I am NOT giving advice on what anyone else should do.

Hi! Just a couple of updates. I’ve been doing pretty well, other than occasional numbness/pins and needles in my hands typically while sleeping. And also occasional lump in my throat. Everything else has seemed to subside, I don’t even need to take all my herbs and minerals I was before.
I did want to mention the COVID vaccine... I had Covid in November, got the J&J vaccine earlier last month and didn’t have any issues other than the sore arm/COVID like symptoms the following day. Nothing lingering.
Take care.

Has anyone here experienced foot drop? I just noticed that I cannot stand on my left heel if I lift my right leg in the air.

I am very scared now, and can´t review 54 pages to check if anyone else has written about foot drop.

I had the rabies vaccine 2 years ago, and have been having neurological symptoms since then.

If anyone has anything to share,please do. Thank you