Worried about my symptoms and my future

I have neuropathy in my feet. It started after my heart attack when I was 39. I am 42 now. My A1C is also high so I am on my way to diabetes. Nobody can explain my neuropathy at all. Just know I have had it since I came out of the coma from the heart attack. Maybe it was the lack of oxygen from my heart not beating for 36 minutes. Nobody can give me an answer and I just try to deal with it. Sometimes it is like pins and needles, other times my feet feel like they are literally on fire. Some days are hard to deal with. The best way I can describe it is, my average day feels like my feet are badly sunburned, dry, and cracking. I haven't found narrowed down what aggravates it or what alleviates it. Some days are just better than others. Hope you can find the answers you are looking for.

Hi,
If you had long covid chances are you have autonomic neuropathy. It and food pisoning (campylobacter) are the major causes or digestive problems. Diabetic neuropathy kills the nerve endings where autonomic ( ANS) demeylinates the nerve endings. Once the nerves are dead from diabetic neuropathy they are history but with the meylin depletion it is capable of remeylination when you are in good health. I have both and at end stage digestive ANS. It affects my glucose and blood pressure depending on the amount of food or fluid I have consumed each day. Being end stage I have to restrict the volume ingested to keep the glucose and bp at slightly high results. If I stop eating they both drop to normal but I die from lack of neutrients, which is happening anyway from not enough neutrients. Currently I'm in metabolic collapse which is the body is feeding on itself because that is all the neutrients it can find. The only solution I have found is what is called a G-J tube insertion opperation. This feed neutrients into the base of the lower stomach relieving pressure off the digestive system. You are then fed via neutrient packs and a pump according to your needs. The theory is the remeylination can then occur. It is not guaranteed to happen this way but generally that is how it goes. I'm struggling to get forward traction for a G-J tube but I have one last chance comming up in a few days. The big problem is very few medical people understand ANS when other complications are in play. For 14 years ANS has been affecting my diabetes, basically the body freaks out when food is dropped into the stomach and provides more glucose to fight what it sees as an attack on the body. As this disease takes hold it also affects your ability to cope with medications. I'm now untreatable for both diabetes and blood pressure as the side effects can be aggression and in some cases violence. It dosen't affect me but everybody around me gets a slice of hell from me. If this is what you are diagnosed with the sooner you get help the better. I was getting glucose spikes of up to 28mmol/l with bp spikes up to 225/114. That puts me well into coma territory but with these spikes the ketones never ever went above 0.4 keeping me out of a coma. I'm now getting blood clots from the inability to walk far and resorting to wheelchairs. ANS can be very invasive when it affects the meylin coating. Why does it happen, when you have long covid or a serious bout of champylobacter the bodies response is to attack the invader. But it doesn't recognise the difference between the meylin and the virus so attacks both not knowing. Then once the virus is gone it continues to attack the meylin as it has learnt this is a virus that needs to be eradicated. How the switch is flipped back again I don't know. It has never come to light with all the research I have been doing.
Anyway, act now and don't be fobbed off without answers. When you get a diagnosis you will then know what you are dealing with.
Good luck
Cheers.

You have issues that are indicative of autonomy neuropathy. If you are seeing a neurologist with access to an autonomic lab you need full testing with 24 hr blood pressure monitoring. With no diabetes history autoimmune testing is also important in your workup. ED is sometimes the earliest symptom.
Take a COMPASS 31 test online to assess your symptoms score and make your
doctor aware of your score.

You can get cardiac autonomic neuropathy aka CAN- it causes bradycardia (heart beats too slow), tachycardia (heart beats too fast) bp too high or too low. Mine lately mine runs 96/44 and the electrophysiologist said I am getting closer to passing away and it will happen in my sleep because your bp gets lower as you sleep. Once diagnosed you are given eight years left to live. Sometimes mine jumps to 150/100 nothing can be done for it. You did not mention if you have had the three biopsies in your leg for small fiber neuropathy which causes the autonomic/dysautonomia problems. It affects bladder, kidneys and organs anywhere there are nerves. Mine is due to my autoimmune diseases I have five different ones. I do not have diabetes or overweight I am 5’8’ and weigh 150. I do have genetic high cholesterol. My mother, grandmother and my 40 year old son has high cholesterol.
Mine started in my 50’s diagnosed in 2002. In my early 30’s. Now I am 64. It moved into my heart in Feb 2021. How diagnosed tested for SFN, one month holter monitor test had over 2500 arrhythmias and then a tilt table test. The results sent to an electrophysiologist that diagnosed me.

Hello @leeleecat91, I would like to add my welcome to Connect, along with @dan84, @cheyne, @seniormed, @artemis1886 and others. I'm happy to see that you have already connect with other members and have some response. Connect is a great way to learn about neuropathy and what helps. I too waited many years before trying to get a neuropathy diagnosis. I had the symptoms of numbness and some tingling but no pain. Best thing you can do is be your own advocate and learn as much as you can about the condition and what treatments are available that might help.

Welcome @dan84, You mentioned your A1C is high and you are now on your way to diabetes. I was in a similar condition in my 40s and later (now 83) and that's when my neuropathy symptoms first started. Since joining Connect and wanting to know more about my neuropathy diagnosis (idiopathic small fiber peripheral neuropathy), I learned about the metabolic syndrome which you are in if you have a high A1C and are in the pre-diabetic category or have diabetes. Here a few references if you want to learn more:
-- The metabolic syndrome – What is it and how should it be managed?
https://journals.sagepub.com/doi/full/10.1177/2047487319886404
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
Another site to learn more about neuropathy and possible treatments:
-- Neuropathy Resource: https://neuropathyresource.com/

Did you have a blood test to see if you have diabetes? Did you get the Covid vaccine? That seems to have altered the health of many people and not for the better. Maybe cutting back on sugar will help. It is advice many of us should follow as it seems to have adverse effects especially as we age. Hope you get answers and feel better soon.

My situation is like yours as it keeps building. But different side effects. I feel for you especially at 35. I’m almost twice your age. I had a total knee replacement done in 2021 and since that time my symptoms just keep adding up. I was so looking forward to retirement, but now it’s only for Dr appointments. I don’t mean for this to sound negative because let me tell you it can always be worse. Mind started with tingling and stabbing in my toes. But has added all the time.
Find a great neurologist and let them diagnose and treat you. It’s not a scary event. I’ve had them shock me (upper & lower) stick pins (like acupuncture) I’ve had DNA testing, spinal tap, blood blood and more blood work done but at least now they can treat me for what I have rather than just getting a blanket of meds that sort of work. Just tell them everything so they can help your exact situation. I tell mine, yes I drink and 420 as well along with my 450 mg of Lyrica & 200 mg of Amytriptaline because otherwise I’m still in pain. It’s all a lot to take in but you’re young and now that you’re open to finding out. Do it now because the unknown and mental stress is worse because looking things up and using AI chats are ok once you’re diagnosed, but a good neurologist/ physician can give you meds, PT, group chats to help you deal with what you actually have. Sorry now who’s ranting. You’re young and once you know what you have you can start to see what the future looks like and how you can have a positive one. All I know for me is one day at a time. You’ll do fine after you get some answers. Sending positive energy/prayers your way.

@cheyne God bless you during your struggles - to be able to help others. 🙏🏼💐✌🏼

Hello @leeleecat91 ,
Sorry about what you’re currently experiencing and felling about it.
Before jumping to all sorts of conclusions, you must be seen by a good neurologist and have all the necessary tests done to find out what you may actually have and then how to treat it if the cause is found out and your condition is not an idiopathic one which means the cause is unknown. A good percentage of people with neuropathy fall under the idiopathic label and the treatments there are not easy to find.
I suggest you rest your head, take it easy, and try to find a good neurologist in your area. This is highly important.
I wish you the best.
Take care and have a serene weekend,
gus