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.

@artist01

Oh phooey! I just realized we are talking about a neurologist. My posting says "neurologist", but I'm meaning to say my "rheumatologist".
Aside from that big blooper, I do also have a neurologist, who even showed me the MRI and CT images of my two strokes. I expect I may see her again once this week's CT scan of my new TIA results are in. Again, good luck with your referral. Laurie

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Thanks…yes glad it is the neurologist.

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@johnbishop

@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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@johnbishop – I had my appointment with the vascular specialist. Sort of. It was highly disappointing. My Dr referred me to this specific dr because he is good at thinking outside the box, but when I got there, it was clear that they only planned to see me as a follow up to my blood clot in Dec, (which I have already done with a different dr) and I actually didn’t see the specialist because he was in surgery, so I saw his PA instead. The PA was good about listening to everything and wrote down info to pass on to the dr, but in the end, he was just as stumped as every other person I have seen, and I have no hope in this actually leading to any answers. The PA says it doesn’t sound vascular to him.

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@jair19

@johnbishop – I had my appointment with the vascular specialist. Sort of. It was highly disappointing. My Dr referred me to this specific dr because he is good at thinking outside the box, but when I got there, it was clear that they only planned to see me as a follow up to my blood clot in Dec, (which I have already done with a different dr) and I actually didn’t see the specialist because he was in surgery, so I saw his PA instead. The PA was good about listening to everything and wrote down info to pass on to the dr, but in the end, he was just as stumped as every other person I have seen, and I have no hope in this actually leading to any answers. The PA says it doesn’t sound vascular to him.

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@jair19, Hopefully the PA will pass on all the information to the specialist. I've had that happen also when referred to a specialist. I've had good look following up on the patient portal that Mayo uses to check up on any questions I still had after meeting with the PA. Since you mentioned the PA wrote down all of your questions and symptoms and was going to pass it on to the specialist, are you able to call or send them a message on a patient portal to see if they had additional thoughts or tests they can run to determine a cause?

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@johnbishop

@jair19, Hopefully the PA will pass on all the information to the specialist. I've had that happen also when referred to a specialist. I've had good look following up on the patient portal that Mayo uses to check up on any questions I still had after meeting with the PA. Since you mentioned the PA wrote down all of your questions and symptoms and was going to pass it on to the specialist, are you able to call or send them a message on a patient portal to see if they had additional thoughts or tests they can run to determine a cause?

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I will need to figure out the patient portal for this place – it is a clinic I haven’t been to before. but, I will try to follow up. The whole thing has just been very discouraging. It has been the same story of “we have no idea what is wrong with you” for over 2 years. This last visit was just more of the same.

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