Vascular neuropathy?

Posted by jair19 @jair19, Jan 25 10:52am

Hi – I am wondering if any of you that are dealing with neuropathy have found that it is actually due to vascular or circulatory issues instead of neurological issues. I have had numbness and tingling in my arms and legs for 2 years. It also includes other symptoms, including muscle fatigue, legs aching, knots in my muscles, etc. I have had every neurological test my dr could come up with and have had normal results on everything. I also had digestive issues that started, leaving me with a lack of appetite, feeling full, feeling sick to my stomach for a year and a half, to the point where I lost 45 pounds without trying. We have looked at neuro stuff and autoimmune stuff, GI stuff, lots of blood tests, scans, procedures, etc and are left with no answers. Recently, I had a blood clot (DVT) and in the process of dealing with that whole situation, I have been wondering if I have circulatory issues instead of neuro stuff. The DVT was due to a narrowing in my iliac vein (May Thurner’s syndrome) and it doesn’t really explain all of the other issues going on -though it made the pain in my legs and hips at the time go away when the clot was removed. The numbness and tingling is still there as much as or more than before, but since I have been on blood thinners, the digestive issues just disappeared. Then, I recently saw an article /ad for a local vascular center that started with something like “are you having trouble with neuropathy? Many people with neuropathy are actually suffering from vascular issues instead or neurological issues” I know peripheral artery disease (PAD) can cause some of these issues, and diabetes, but I don’t have diabetes (they have checked many times) and I am not overweight (because of all of the digestive issues) and I go walking almost every day, so it isn’t a problem with not exercising, my cholesterol is fine, so it doesn’t seem likely that PAD is the problem. The other stuff I have looked up usually affect smokers, and I have never smoked. I am just wondering if anyone here got answers that took them in the vascular direction. Thanks.

Hi @jair19 I believe my neuropathy was related to a circulation issue when it was accidentally caused during my last surgical repair of my AVM. A circulatory surgeon performed an endovascular embolization. Although he assured me I was lucky no nerves were cut during the procedure, I was left with neuropathy on the left side of my body from head to toe. In the recovery room he told me the numbness, pins and needles feeling will eventually go away. It is now exactly 4 years later and I am still dealing with its effects. I too have had digestive issues besides the muscle weakness. Not sure how much of it is related to the neuropathy or the AVM deficits. I know the burning of my esophagus and stomach started after my neuropathy was brought on which was 4 months after my AVM. Toni

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@avmcbellar @jair19 I had lost 50 pounds down from 195 due to a damage done while the local IA surgeon did a Nissen.. At Mayo MN my GI Doctor diagnosed my gastroparesis and when doing so he prescribed Mirtazapine … he said that would help me think I should eat more.. I have gained back 27 pounds from my low point.. I was wondering though about the AVM surgery causing the neuropathy…as it is usually done from inside the arteries that lead from the groin to the brain.. So if the catheter is only within the artery can it damage nerves? As you can see I am not a medical type… but the connections of the body's so many variables is of interest.. Ken

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Hi @ken82 thanks for your response. I am indeed happy no nerves were severed. I had my first surgical repair at the time of my AVM which occurred at the cerebellum. I have an incision scar at the base of my head on my neck in the back. I did not feel the effects from the surgery until I woke up 2 weeks later from a coma. Within 2 days of waking up I had another surgical repair but this time it was through the groin. I experienced no neuropathy then. It wasn’t until 4 months later I felt the symptoms of numbness or pins and needles during recovery from my 3rd and last surgical repair. It was also done through the groin. The aftermath was an annoying feeling. I thought my circulation was compromised. I found myself often checking but found no signs of circulation issues. I never had any before. I have good and bad days for the burning pain. When I followed up with the surgeon he offered no explanation why this was still occurring when he told me it would eventually go away. He was stunned. Anyways, I know the surgery was dangerous and I am thankful for not being in a much worse state. Since my AVM is a rare occurrence, I am learning on my own to help myself. I don’t rely on the medical team of doctors since not much is known plus I don’t want to become a guinea pig with the medications. I don’t take any medications unless absolutely necessary. I have learned much about my GI problems on my own. Why didn’t the team of neurology doctors offer any help when I complained of my symptoms? The doctors were baffled. It has taken me a while but I have slowly figured it out due to my symptoms. I was never able to lose any weight after my AVM. That is because I was glucose intolerant. Why was I not told that? I had and still have all the symptoms. I am working on a treatment now. I have become more cautious of our medical system because I am less trusting with doctors. Thanks, I appreciate the information Ken. All I can do now is to continue learning. Seems I know more than the doctors. Scary. Toni

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@avmcbellar

Hi @jair19 I believe my neuropathy was related to a circulation issue when it was accidentally caused during my last surgical repair of my AVM. A circulatory surgeon performed an endovascular embolization. Although he assured me I was lucky no nerves were cut during the procedure, I was left with neuropathy on the left side of my body from head to toe. In the recovery room he told me the numbness, pins and needles feeling will eventually go away. It is now exactly 4 years later and I am still dealing with its effects. I too have had digestive issues besides the muscle weakness. Not sure how much of it is related to the neuropathy or the AVM deficits. I know the burning of my esophagus and stomach started after my neuropathy was brought on which was 4 months after my AVM. Toni

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Hello avmcbellar and @jair, avmcbellar, this seems inexcusable! Does this doc know what happened as the result of this surgery? I personally find it strange that he assured you you were lucky no nerves were cut during the procedure. Me thinks thou doth protest too much! That is a HUGE red flag to me. I'm not a litigious person but this screams of a case here. I feel awful about what you've suffered. I will uphold you in my thoughts and prayers. Warmest and best wishes, Sunnyflower

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@sunnyflower

Hello avmcbellar and @jair, avmcbellar, this seems inexcusable! Does this doc know what happened as the result of this surgery? I personally find it strange that he assured you you were lucky no nerves were cut during the procedure. Me thinks thou doth protest too much! That is a HUGE red flag to me. I'm not a litigious person but this screams of a case here. I feel awful about what you've suffered. I will uphold you in my thoughts and prayers. Warmest and best wishes, Sunnyflower

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Hi @sunnyflower I appreciate your comments. I have a different outlook on the matter. The doctors told my family I was not going to make it but I pulled through. I know it is a difficult surgery. It is very disabling but I am grateful to still be alive. Not much is medically known so I don’t expect much. That is why I learn to help myself. I have lost faith in our medical system because I feel it is like an assembly line. Doctors have to follow guidelines set for them and thereby cannot treat as they would like. Thank you! I take each day at a time. We never know what the new day will bring. Toni

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I am wondering if I have this????? My limbs are feeezonf cold and going numb/hollow feeling….. my head is extremely confused I can’t function. No one helps me. No specialist dr.

Recently my limbs started to turn crusty and purple. My head is extremely lightheaded I always feel as I’m going to pas out I can barely talk my personality smarts are gone????

I’ve had mri ekg lumbar echo eeg 100 blood tests nothing comes back bad I can

I can beeely walk think I feel like a vegetable my body is hollow and numb and cold it hurts to breathe I’m only 27 no one helps
Me

I got this in April…… maybe Covid exposure?????? I read Covid can cause inflammatory vasculitis

Any ideas to help me no doctors or specialists will and I feel like I’m going to die soon…. no exaggerating. I can’t think barely walk can’t function can barely eat. Please help me.

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I am just a patient, so no specialist advice from me. However, I was wondering if you have seen a cardiologist? I saw one, not expecting much but it turned out that I had the start of heart disease. He began to treat with cholesterol reducing drug and he did some minor surgery to remove some varicose veins. It helped the heaviness in my legs. So, I don't have vascular neuropathy, just the good old regular kind. My ankles and feet are sometimes purple. I have to wear compression socks which help quite a bit. You may want to get a cardiologists opinion on your purple arms and legs. Also, my brother in law had to have a small rib removed on each side of his chest. It was constricting his arms and caused two blood clots. His arms turned purple for a while prior to the surgery, but no crusty stuff.
I am so very sorry you are dealing with such awful symptoms. Someone has to give you answers. My thoughts are with you, in lieu of anything else.

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@bethunger

I am just a patient, so no specialist advice from me. However, I was wondering if you have seen a cardiologist? I saw one, not expecting much but it turned out that I had the start of heart disease. He began to treat with cholesterol reducing drug and he did some minor surgery to remove some varicose veins. It helped the heaviness in my legs. So, I don't have vascular neuropathy, just the good old regular kind. My ankles and feet are sometimes purple. I have to wear compression socks which help quite a bit. You may want to get a cardiologists opinion on your purple arms and legs. Also, my brother in law had to have a small rib removed on each side of his chest. It was constricting his arms and caused two blood clots. His arms turned purple for a while prior to the surgery, but no crusty stuff.
I am so very sorry you are dealing with such awful symptoms. Someone has to give you answers. My thoughts are with you, in lieu of anything else.

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@bethunger I haven’t been to a cardiologist but I am working with my primary care dr to get a referral into a vascular surgeon here that is supposed to be really good and can think outside the box. We have been so focused on thinking it was neurological that we hadn’t considered circulatory. I don’t get swollen or turn purple or anything like that – which would usually be a giveaway, so my dr thinks that maybe this is something less typical? Who knows. I just wonder if anyone else has had something like this neuropathy and digestive issues and found out it was cardio/vascular/circulatory.

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@avmcbellar

Hi @sunnyflower I appreciate your comments. I have a different outlook on the matter. The doctors told my family I was not going to make it but I pulled through. I know it is a difficult surgery. It is very disabling but I am grateful to still be alive. Not much is medically known so I don’t expect much. That is why I learn to help myself. I have lost faith in our medical system because I feel it is like an assembly line. Doctors have to follow guidelines set for them and thereby cannot treat as they would like. Thank you! I take each day at a time. We never know what the new day will bring. Toni

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Well I for one am glad you made it! Blessings, Sunnyflower

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@jair19 I did find some information that supports your question on neuropathy caused by vascular or circulatory issues vs neurological.

"Vascular disorders: Neuropathy can occur when blood flow to the arms and legs is decreased or slowed by inflammation, blood clots, or other blood vessel disorders. Decreased blood flow deprives the nerve cells of oxygen, causing nerve damage or nerve cell death.Dec 16, 2019" – Neuropathy (Peripheral Neuropathy) – Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/14737-neuropathy

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@johnbishop

@jair19 I did find some information that supports your question on neuropathy caused by vascular or circulatory issues vs neurological.

"Vascular disorders: Neuropathy can occur when blood flow to the arms and legs is decreased or slowed by inflammation, blood clots, or other blood vessel disorders. Decreased blood flow deprives the nerve cells of oxygen, causing nerve damage or nerve cell death.Dec 16, 2019" – Neuropathy (Peripheral Neuropathy) – Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/14737-neuropathy

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Thank you @johnbishop. I looked at that article and it was helpful and linked me to some other articles that were also helpful. I am very lucky, and managed to get an appointment with the vascular specialist next week, instead of “sometime in March” so maybe, hopefully, I will get some answers (?!)

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@jair19

Thank you @johnbishop. I looked at that article and it was helpful and linked me to some other articles that were also helpful. I am very lucky, and managed to get an appointment with the vascular specialist next week, instead of “sometime in March” so maybe, hopefully, I will get some answers (?!)

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@jair19, Can you let us know how your appointment with the vascular specialist goes next week? It's great that you were able to move the appointment up.

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