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Vascular neuropathy?
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.
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Hi everybody. Another rare vascular disease that causes all sorts of issues is Giant Cell Arteritis (GCA). I was diagnosed with that in June, 2019, and had 3 days of 1000 ml I.V. prednisone in hospital, because I had lost vision in my right eye. Tapered on prednisone until November 2020, as well as started on Actemra November 2019. Taken off both in November 2020 due to WBC and neutrophils crashing. Back on Actemra every 2 weeks instead of weekly, the one treatment for GCA, and doctors are watching my lab work carefully.
Had 2 strokes in July and September 2019, a blood clot in left leg December 20, 2020 and a TIA January 22, 2021, so lots of worry for the doctors over so many clots, and why. Noted that I have a blocked carotid artery on right side (60%).
Has our member (I forget who it was that posted querying vascular issues) ever had GCA tested? Mine presented with the vision loss and I therefore had a biopsy of my right temporal artery to confirm the diagnosis. (That's the Gold Standard test for GCA.) I was hospitalized immediately following that procedure for the prednisone protocol, in order to save further vision loss in my good eye.
I hope this information might help. I've posted it before on other sites when members have queried various issues I've dealt with as a GCA and Diabetic patient.
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1 ReactionThat is really helpful! I hope mine does not go as far as yours, but it is a concern. Just planning on seeing my doctor this coming week to get a referral to a neurologist and I will ask about the Giant Cell Arteritis (GCA) test. Thank you.
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2 ReactionsHello again, @maryflorida. So happy you will be referred to a neurologist. My neurologist is part of my Dream Team of doctors, and very involved with my care. Because she has me on Actemra, I get lab work done once a week, or twice a week if my WBC or neutrophils are too low. I also have a 3-month phone appointment (not an office visit, because of Covid) and can also phone her at any time, if issues come up that concern me.
Good luck!
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1 ReactionOh 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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1 ReactionThanks...yes glad it is the neurologist.
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2 Reactions@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.
@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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1 ReactionI 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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1 ReactionI have had neuropathy for about two years and recently My foot doctor sent me to a vein specialists for discoloration around the ankle area of both my legs...
The vein doctor told me I have vein issues in my lower legs and it might also be the cause of my neuropathy as well...
Per my insurance I have to wait six weeks and then I can start having treatments which will be minor surgery to shut down any veins that are not working properly (leaking)...
Time will tell if this surgery will help my neuropathy...
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5 ReactionsWelcome @jlh1960, I have discoloration in both of my legs around the shins mostly. My primary care doc told me it was edema and later I was diagnosed with lymphedema and have to wear compression socks which help the swelling but don't do much to help with the neuropathy. I can remember my father having surgery for varicose veins which were quite painful and it helped him so hopefully it will help your neuropathy symptoms.
Can you let us know how the surgery goes?
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5 Reactions