Newbie, maybe?
Posted , 7 users are following.
I'm hoping you all can help me understand what's going on!
I have had some peripheral neuropathy for the past few years that just involves tingling that is annoying but not painful or causing numbness in both legs and feet. My mother had this same condition and it never became anything problematic so I never sought treatment. Until now.
I was recently diagnosed with early stage breast cancer which requires chemo as it is an aggressive type. Unfortunately, one of the side effects from many chemo drugs is... peripheral neuropathy! My medical oncologist suggested I see a neurologist prior to chemo to see what's going on. He ran some tests and I tested positive for ANA and SS-A antibodies(+8) but not SS-B.
Needless to say, I was surprised because I don't have any aches or pains or physical problems, eyes are fine, I'm usually drinking something so it is possible I might have a dry mouth but when I don't drink for several hours I don't have any problem with saliva production.
I don't see the neurologist until next week so I am trying to learn about this on my own.
Can you have these antibodies and not have an autoimmune disorder?
Thanks in advance for your help!
0 likes, 30 replies
beverly39559 Lita19901
Posted
I'm sorry you're going through this. I'm 71 years old and was diagnosed about 10 years although I look back and I've had weird systems for 20 years or more. I'd get weird feelings in my legs and feet along with extremely dry mouth and eyes. I went from doctor to doctor and I'm sure they thought I was nuts because all tests were negative until 10 years ago when my general doctor did tests for autoimmune. My ANA was elevated and sent me to a rheumatologist who said I definitely had Sjogrens. I told him about my numbness and weakness in my feet and legs. Felt like I had very tight socks on all the time. He sent me to a neurologist who said I had small fiber neuropathy due to Sjögren's syndrome. He put me on a immumine suppressant which has kept it in check for all these years. I have a blood test every month to check for liver problems etc. I still walk everyday and work on my stability ball. I golf twice a week even though I sometimes can't finish 18 holes due to weakness in my legs. So don't give up, there are options. 😊
Lita19901 beverly39559
Posted
beverly - I do so appreciate your taking the time to answer my questions! It sounds as if you have been through a lot and it's heartening to know that you're able to still do so much.
margaret22116 Lita19901
Posted
I am not sure I can answer your actual question about the antibodies but would say that some people can have these disorders and not be terribly bothered by them. Symptoms do range from very mild to very aggressive so it is possible you are just lucky that you don't have full blown flares. I would be worried that chemo may be the thing that could bring that on but I don't know about that either and a rheumatologist should be the person who answers that but I just think that no one will really know. These disorders are so unpredictable. It may just stay quiet for the rest of your life....I hope so. I am sorry for your predicament and hope all goes well with your treatment. x
Lita19901 margaret22116
Posted
Margaret, thanks so much for the kind and encouraging words. I'm being seen at Johns Hopkins for the BC and just discovered they have a Sjogren's clinic so hopefully once I get a complete work up for the Sjogren's they'll be able to coordinate treatment, etc. and give me more definitive answers. It's an unusual situation but hopefully they'll have some experience with this double whammy.
I"m wondering if anyone here knows how long it takes to get a full workup for Sjogren's. JH only sees people who have already have this done.
Tumtum1963 Lita19901
Posted
You are so fortunate to be under the JH - it's the leading hospital for Sjögren's in the world! I'm in Scotland and spend a lot of my time dealing with doctors who haven't even heard of Sjögren's - and who certainly wouldn't have considered it as a possibility unless you had severe sicca with another rheumatic disease. All their focus would have been on the BC without a second thought for the neuropathy. I'm really glad for you about this.
aitarg35939 margaret22116
Posted
Excellent point, Margaret: millions and millions of people with & without AI have arthritis in various spots without ever feeling pain, proven by MRIs, xrays, and other tests. We don't know why much of anything lies dormant in the body, but I'm thankful for anything that does, in anyone. I hope your as keeps its head down forever, Lita.
aitarg35939
Posted
margaret22116 Lita19901
Posted
Lita I wish you well you have a lot to contend with here and decisions to make.
But I would urge you not to let anyone make you think that bad lifestyle choices or stress have caused you to have a form of vasculitis.
I have had it with periods of remission since birth. I see a very very good Professor who specialises in vasculitis who firmly believes that vasculitis 'dances to it's own tune' and that it is not lifestyle choices or stress which cause it. He is an extremely intelligent man who has done a lot of research in Cambridge on this subject. When I was birn I was clearly not making lifestyle choices and zi am quite certain I was not depressed or anxious. All too often we are dismissed in that way.
Good luck whatever you decide to do and if you need chat or support as you go through that process you will find it here. X
lily65668 margaret22116
Posted
Hi Margaret,
I'm not sure whether or not you were referring to my most recent post in referring to people saying bad lifestyle choices cause vasculitis. My apologies if I've got the wrong end of the stick.
Just to put things straight, I was not saying that, nor that bad lifestyle choices actually cause any disease. I don't believe it works that way. In any case, I believe Lita was referring to peripheral neuritis, which is a different condition - though both can be part of SS. My point was the converse - that good lifestyle choices can often mitigate the results of diseases to which our genes have predisposed us.
For the record, I come from one of those "cancer families". I know most oncologists don't believe in the existence of a generalised "oncogene" - as opposed to the genes for some kinds of breast, ovarian and colorectal cancer. However there is copious anecdotal evidence to indicate the contrary. My father and three of his four siblings died of different cancers - lung, cervical, stomach and penile (leading to generalised pelvic) cancer. Two died in their early 50s, the other two in their mid-60s. Their father and his twin brother both died of colorectal cancer at an relatively early age. On my mother's side I have a strong heritage of autoimmune conditions such as RA, asthma and severe allergies.
Having probably been dealt a poor genetic hand myself, I can certainly sympathise with others in the same position. Nonetheless, I believe that maintaining an optimistic outlook and a reasonably healthy lifestyle - without obsessing over it, which is in itself unhealthy - has stood me in good stead up to now. That could, of course, change tomorrow. We none of us know what life has in store for us. I'm willing to accept that.