neuropathy through lupus

Has anyone been diagnosed as having Lupus which is attacking the nervous system? I would really appreciate to hear from you and to tell me your experiences. I am currently on Cortisone and Imurek, an immune depressant drug.

Thanks for reading this.

x

[gillypom]

Hi. I was diagnosed with Lupus in March this year and was diagnosed with peripheral neuropathy at the same time but I am not sure if the Lupus has caused this or they are separate issues. I am currently on methotrexate, predisnisalone and in the last two weeks was prescribed "Lyrica" for the burning, pin and needles and numbness in my feet and legs and I must say the Lyrica has worked wonders for me. Sorry I can't be of more help to you but perhaps other people will have more information. Good luck with everything x

[lauraa11en]

I think I have what you are talking about, and I'll share my experience but just remember this is me and just me. I suffered last year what doctors thought was a stroke. I lost the use of my left side, my speech and other stroke like symptoms, spending 9 weeks in hospital. However, because there was no scarring on my brain it was then decided it wasn't a stroke and I was referred to psychiatry with no medical follow up, although psychiatry disagree and only diagnosed depression, but 9 weeks on an elderly ward (I'm 29) away from my then 2 year old and 4 month old I think depression is acceptable. Anyway 12 months on after getting no treatment and only getting worse I paid to go private. After looking at all my blood results and my family and medical history she diagnosed lupus. She thinbks all this is a result of it but it sounds like I've had it about 15 years and its never been picked up. Only problem now is my liver has been damaged so have to wait for it to repair before I can start treatment. On the other side though I saw th registrar at my local NHS hospital who disagrees with all that, even though bloods confirm it and says its nothing more than fibromyalgia!

All I can say is make sure you find a good rheumatologist and stick with them! Good luck xx

[Hidden]

Thanks for getting back to me lauraa and gillypom.

Mine is distal-symmetric polyneuropathy and it is affecting me with electric like pain which jumps about in my whole body. Not good for sleeping. Also walking alone is not safe as it affects my legs, feet and ankles too. I have read somewhere that there can be a definite connection with Lupus. I do have all the other Lupi signs.

Do you two also get the blues all of a sudden and you can't stop weeping?

I wish you both strenght.

xx

[Tigerlily4]

I can't comment on polyneuropathy but lupus can in fact cause quite severe depression while one is in flare. Dr Hughes wrote a very helpful series of leaflets on SLE for Lupus UK in the 90s which I still have - Lupus and Depression being one. No idea if they're still available via the charity. Basically the brain, like any other part of one's body, is capable of becoming inflamed too and has only limited ways in which to respond, depression being fairly classic, just to add to our miseries

[Ericanemec]

Yes,Lupus headaches are due to lupus affecting your brain and is an early indication of brain involvement.