Neurologist Says Neuropathy Not Lupus Related...HUH!

What? Really? Really?

My neuro just dxed me with another neuralgia (trigeminal neuralgia) and I've had peripheral neuropathy for almost twenty years now. We used to think my PN was caused by my diabetes, but my glucose has been in excellent control (AIC=5.5 last 10 yrs) and my neuropathy is worse. I went to see him about the worsening neuropathy since it's progressing rapidly now and the zapping pains (I like to call them "Aunt Agatha's Traveling Pains" lol are relentless lately. And he said lupus doesn't cause neuropathy. HUH...of course it does. Right?

Does anyone here have neuropathy and if so, is it from lupus?

Thanks in advance, HUGS, and LOVE and HAPPY HOLIDAYS! Julie

Hi there jujbeee, i have not experienced the trigeminal neuralgia myself personally, but my mum used to get this and she would be in absolute agony at times. There wasnt much i could really do for her though. Another awkward thing with my mother was she was totally anti any medication, so she would try and get through it without any pain relief whatsoever. Some days she would end up in tears with it, so i do understand this must be really hard for you to cope with sometimes. Its good about your diabetes being under controll at the moment, not many people manage to get their under control, so you must have a really good doctor. And yes you are right, Lupus can trigger Nueropathy, Lupus can trigger alot of things, because thats what the word Systemic means, basically System, means the whole system, the whole of the body in other words. About 20 years ago i trained as a nurse and had to give it up because the pay wasnt great and i went back to teaching dance and music, english and maths. The pay was nearly double what i was getting as an RGN, which was a shame as i did enjoy nursing, but i had my mortgage and other bills to keep up with, so i had no option. I am lucky in a way, so the doctors say to me as i have a good understanding of how our bodies and illnesses work, but sometimes i dont know if thats a good thing when i am told i have something and know how serious it is already, without having to ask, sometimes a bit of knowledge is a good thing, and other times we would prefer not to know. Whoever said that Lupus cant trigger neuropathy, hasnt dont their homework very well. They just have to think of the word Systemic to realise that anything to do with the whole system (the body) can be set off by Lupus. Anyway i wont go on about that part of it, but i am thinking of you, take care, look after yourself, bye for now, love and hugs Astrid40xoxo

I've also had neuropathy/neuralgia for years, and saw a neurologist about it prior to my Lupus diagnosis. I haven't been back in quite some time (as my favorite Dr. moved away), but would be interested to confirm the connection.

On the "Lupus Foundation of America" site, there are several web chats and articles pertaining to neuropsychiatric manifestations of Systemic Lupus Erythematosus (NPSLE).

My impression is that it seems neuropathy can sometimes be caused by Lupus affecting the CNS & sometimes it may be caused by other sources (medications, vitamin deficiencies, other illnesses).

Hi jujubeee, thankyou for this message. I know what you mean when you say you arent sure if this type of medication is a good idea. Some drugs do cause drug induced Lupus which is completely different from the Systemic Lupus that you have already, i assume. Am i on the right tracks. I remember years back having a bad reaction to some antibiotics called Septrin, and thats another drug that causes drug induced Lupus. It might not have caused me in full to have Lupus, but i am sure it cant of helped. After that drug was when i started getting worse and worse. They think though that my Lupus went undiagnosed for many years when they look back at my records of loads of different infections one after the other, and also having to have steroid injections in my knees, thinking that was like a one off when they gave them to me. If they had done the right tests they would of probably found i already had Lupus when i was having to have the injections in my knees, and i was also getting alot of problems with my kidneys, they said that would pass, it wasnt until i moved and had to get a new doctor who was more understanding that i found out all these things were to do with having the Lupus. When i got one infection after the other i was thinking what on earth is going on. I got chickenpox at 26, they were so severe that the doctors took photos in the form of slides to show student doctors to let them see how bad chickenpox could actually get, with all these different things you would of thought warning bells would of rung for the doctors. I sometimes think a fresh look at things really helps. As sooon as i told this new doctor my symptoms and said i felt like a hypochondriac as i have so many different ailments, that he said he thought he already knew what was wrong with me, but wouldnt say until after the blood tests and seeing the Rhumatologist, which got things moving and i was diagnosed with the Lupus and was given some meds which really helped me at the time. Anyway good luck with everything, take care, look after yourself, bye for now, love and hugs Astrid40xoxo