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?
I am sorry to say that I can't answer your question. One common problem is folks who have symptoms for years before anything shows in tests. That doesn't negate the opposite situation. I had restless legs before I was diagnosed. I had also had intermittent large areas of tingling in my legs. At the time we believed it all was a result of injuries from a bad fall. But eventually my ortho surgeon said that he could not understand why I hadn't improved (no surgery done), because I'd worked hard at PT but I definitely still was in too much pain. Ha! I know now that the explanation was SS. I hadn't considered any connection with the tingling til re-readin your question. No way to know now as I had documented nerve damage from spinal injury. That improved greatly as a result of acupuncture 18 years later.
There are other folks here who know a lot about those tests. They will pop up, tho activity tends to be very light on the weekends. Apparently some folks have social lifes, lol.
Am sorry to hear about the breast cancer. For all of it, you're in my prayers.
Firstly I'm so sorry to learn that you have breast cancer. I'm very much hoping that this can be dealt with through aggressive treatment which puts you into full remission.
Unfortunately I know only too well that Sjögren's can affect the nervous system well before it causes Sicca. As it happens I have had Sicca since I was wee but it's never progressed and I still produce plenty of saliva. My teeth used to be dreadful when I was a mouth breather but I retrained myself a few years ago to breath through my nose and I hardly eat any sugar so my teeth are good now.
I'm told that the small fibre neuropathy of Sjögren's is usually self limiting so perhaps this is why yours hasn't caused you too much distress. Mine seems to be continuing to progress and now affects my digestive system and face as well - and has been extremely painful off and on over the years. But I'm only ANA and lip biopsy positive - which makes me seronegative. And apparently seronegative sufferers have a much greater propensity to get the neurological presentation compared to seropositive people like you.
Also - it might be worth knowing that, as you are seropositive, this may have had a bearing on your breast cancer because people with seropositive are at an increased risk of getting cancers that affect the Lymph nodes - particularly non Hodgkin's lymphoma. This is one of the most treatable types of cancer though.
I mention this just in case it helps to discuss this with your oncologist re treatment options such as Rituximab? I'm sure that your specialist will know this but like I say..just in case.
Best of luck to you in making a full recovery from the cancer.
I really appreciate your taking the time to respond to me. This is such uncharted territory for me and with the breast cancer diagnosis plus this I am having a really hard time coping. I've always had such good health overall that my mind is reeling because of what I'm facing. I know I shouldn't complain, knowing how much other people have gone through but I just don't know how I'm going to go forward.
Thanks so much for responding to my post - I really appreciate it so, so much, especially since yesterday.
About a year ago I had some weird feeling of thickness in my calf and also some feeling of numbness in my jaw line and in a small section of my lip. It scared me so much I thought I was having a stroke so I went to the emergency room but it kinda/sorta went away and other tests showed nothing so they sent me home.
Yesterday I had a recurrence of that feeling and realized this is from the Sjogren's. It lasted for a few hours and just like last time there was no pain, just a feeling like you get when Novocaine is wearing off. And tody I'm thinking I'm feeling something similar in my left jaw but I think I'm so focused on what I"m feeling that if I broke a fingernail I'd attribute it to Sjogren's! But I can no longer say that it's just a tingling problem in my legs and feet.
But I did get mild carpal tunnel (assuming this is related?) when I was pregnant 30 some years ago that never went away but has never caused pain and has actually gotten better over the years, although I am feeling some mild but fleeting carpal tunnel-like feelings in my right hand over the last few weeks.
I"m 65 and there have been no other problems that would lead me to believe I have had this until recently.
I'm scared and feel sick inside but I'm trying to hide this from my husband who is being put through enough already. I though I had at least a few years left of feeling well. I'm not sure if I can continue, or if I even want to. Before June 21st, I had a high energy level, no pain, no stiffness, lots of plans for the future, very happy and fulfilled. Before last Thursday I thought I could beat the cancer. Now all I see is a nursing home.
I was diagnosed with SS 12 years ago - having had symptoms which were clearly down to SS for 10 years before that. Late diagnosis in SS is a commonly recurring theme on these boards.
Although a few people in here have drawn the short straw and become seriously ill with SS, the fact remains that for the majority it is a relatively mild, and perfectly manageable, condition. I'm 73 now, 22 years down the line from my first symptoms, living alone, and I can assure you I'm nowhere near ready for that nursing home!
I can remember the first time one leg suddenly went numb from the knee down. It must have been about 15 years ago. I was lying in bed, wide awake and reading, when I suddenly noticed that "thick" feeling in my calf that you describe so well. It felt like that thing that occasionally wakes you in the night when you've been sleeping with one leg on top of the other - only I was wide awake with both legs stretched out in front of me. When I threw off the covers I discovered I could move my ankles and toes quite normally, but there was no sensation of movement below the knee. Just like you, I freaked out a bit too! Fortunately I'm a former neuro nur se so was able to establish that it was only my left leg that was affected, and the loss was just sensory and not motor, all of which indicated that the problem was peripheral rather than spinal or cerebral. It went off after about 10 minutes.
That still occasionally happens but these days the main nerve problem is the constant pins-and-needles in my left hand, that is now starting to affect the right hand too. However, this is perfectly "liveable".
I've been fortunate in that I've so far been spared any serious organ damage. My thyroid gland has been the main victim - something that happens with the majority of autoimmune conditions - but that's easily fixed by popping a pill every morning. In the past couple of years I've started to develop an asthmatic condition - another symptom of SS, which can cause lung inflammation - but that too is now well under control with use of a steroid inhaler. Apart from that I just have the usual assortment of dry eyes, tendon pain, Raynaud's syndrome etc., but nothing to write home about really.
I suspect it's the cancer that's really getting to you, and causing you to look at everything through a gloomy lens at the moment, and that's quite understandable. But don't forget, breast cancers are among the easiest to treat these days, and I expect you've caught yours very early. As tumtum says, discuss all this with your oncologist, and make sure he knows about your blood results and the full extent of your symptoms.
I wish you all the best with your upcoming treatment.
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. 😊
The thing about Sjögren's, Lita, is that it is a different disease to each sufferer.
For me, aged 54, with no cancer to contend with but a lifetime of autoimmunity - it's a full on, stand alone disease. One way or the other it has shaped my existence in one guise or the other - long before I had a name to put to it or knew that my hypothyroidism was Autoimmune or realised that chronic constipation was actually a form of IBS - for example.
For young sufferers it often tortures their eyes and mouths or other parts. And, not yet having been able to relish raising families, or having to struggle along with non diagnosis such as "health related anxiety" or ME or Fibromyalgia - with stuff said such as "it's not going to kill you though" or "pull yourself together/ snap out of it!" - life is not fulfilled for these young people in the way that it is for most healthy children and adults.
For others it is, as Lily describes, just a relative nuisance. I personally haven't come across younger sufferers than those here, who describe it as merely a severe nuisance. But then I never thought to come on forums like this with my symptoms either - I just assumed it was me and I'd drawn the short straw - but was very lucky in other ways to have children and live in a good place and have a lovely partner and be a creative person.
While I don't want people to get the idea that autoimmune diseases are always life sentences - nor do I favour the idea that we shouldn't be honest about what they can and do entail for the majority of sufferers.
This is important I feel, because Sjögren's isn't a disease that you can just take a pill for that should keep it well controlled - as I do with hypothyroidism for the most part. Nor is it a disease that can be sent into lasting remission. For me I'd compare it with MS, but previously mine was diagnosed as RA. When the RA-type symptoms started I was in my mid 40s and this turned my life upside down - just as a diagnosis of cancer is doing for you now. I don't think it helps sufferers - particularly younger ones, when people minimise Sjögren's to being just a nuisance disease. Especially given that fatigue is the number 1 symptom and bearing in mind the role our eyes and mouths play in our everyday lives. Never mind that for some of us it's a systemic disease affecting every part. Awareness raising about Sjögren's is very important to me!
But then again, symptoms you've been living with quite happily are symptoms that another might consider very debilitating. So of course you feel devastated just now - but bear in mind that you may have been living with a mild version of Sjögren's for many years and not had it turn your life upside down until now, when it's coincided with breast cancer?
To me getting to 65 without feeling sold short by chronic illness is to be viewed as a good thing - something to be born in mind as you move forwards. But you can still blame Sjögren's for broken nails of course! 😊
Tumtum, I totally agree that those who contract Sjogren's earlier in life are likely to suffer more than those, like me, who get it after middle age. Quite apart from anything else, this is typically a progressive disease, and there's more time for it to progress if it starts at an earlier age. I would certainly never seek to minimise their symptoms.
I think there are exceptions in both directions. For example, Venus Willi@ms is an example of a young sufferer who is coping remarkably well with the disease - though I don't know whether there will be a price for that in middle age. (I hope not, for her sake.) I'm inclined to agree with you that in the opposite case - those diagnosed at a late age in whom the disease progresses rapidly - the probable explanation is that they've had it for years without being diagnosed.
However, I still think that Lita, at age 65, will probably not be too hard hit by Sjogren's. And once again, I would reiterate to Lita that any forum dealing with a specific condition can give a distorted view of its severity, as the hardest hit are naturally more likely to need more support and therefore to gravitate to forums of this kind. I also suspect that a significant minority (or maybe even a majority) of those less affected by SS never get diagnosed at all, so don't show up on forums. That was certainly the case for me during my first 10 years of the disease. It took me at least five years to figure out what was causing my ragbag of apparently unconnected symptoms, and as long again to convince a doctor to order the right blood tests.
To Lita I would say: stay positive. Easier said than done, I realise, when you have a cancer diagnosis to contend with as well. However, there's plenty of evidence that a positive outlook is beneficial in any illness, and particularly in cancer and autoimmune conditions.
I think Venus has to be left well out of the equation for several reasons Lily.
1. We know very little about her diagnosis
2. Most of us don't start on a level playing field (or tennis court!) as her in terms of our fitness or inherent athleticism
3. Drugs such as cortosteroids can make even me feel superhuman!
4. Money can buy a great deal in terms of lifestyle and treatments - holistic and conventional
5. As you say - she's still only in her late 30s and autoimmunity can hit hard suddenly at any time - who knows what all these years of playing elite tennis will do - price to pay or lasting remission - not relevant to the vast majority of sufferers at all!
I guess my most protective instincts will always go most of all to those who suffer undiagnosed and feel disbelieved. And for being taken seriously by the medical profession from the onset of RA-type joint pain - I thank my lucky stars.
Lily, I know the breast cancer diagnosis has thrown me for a loop but so has Sjogrens. My fear with breast cancer is more treatment related, and my major concern has been with the side effects from treatment. The chemo that is normally used with my kind of BC causes neuropathy, as do the targeted therapy and the anti-estrogen treatment; in fact, the anti-estrogen treatment is discontinued by a great number of women, up to 50% shown in some studies. It causes joint pain, bone pain, nerve pain, osteoporosis, depression, weight gain, etc. etc. etc. And you're supposed to take it for 5-10 years.
I know that we have been told that breast cancer, if caught early, is a very treatable disease. The irony is that in 80% of women with early stage breast cancer no treatment is needed beyond surgery and radiation. The catch is that there is no way to identify that 80%, so everyone gets all the treatments that cause pain, kill your immune system, cause lymphoma, and other lovely conditions. Until recently it was believed that if the cancer had not escaped to the lymph nodes you were extremely lucky; however, science has shown that BC cells escape into the blood system BEFORE the BC is even detectable. And BC is very sneaky - it manages to hide itself and take up shop in the bones, the lungs, the brain and hang around for many, many years before coming to life again. An example is Olivia Newton John - 25 years ago she was treated for BC and she recently was diagnosed with BC that had metastasized to the bones. Breast cancer is a nasty disease and the survival rates are not that great.
TumTum - thanks so much for your response! I agree - just as with BC, it's so much harder for younger women. I had my happy years of raising my kids and living without any health problems. But I love my life now, too - and I hate the idea of not being able to do the things I love, like gardening and sewing/knitting/embroidery/crocheting/quilting, all of which I on a daily basis - I make dolls and they give me great pleasure in creating them.
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.
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
Hey why would either BC or Sjögren's prevent you from crocheting dolls? RA might make this hard but I see no reason why Sjögren's or BC would. One of my good friend knits away daily and she had a double mastectomy a few years ago but is in complete remission. I have quite advanced Sjögren's but I'm an artist and, amongst other things I embroider dolls and put them in my miniature oil paintings! Also I'm hoping to embark on a PhD soon - despite how the Sjögren's has taken my energy levels down -it would have to be part time with a bed nearby lol!
Take inspiration from Professor Stephen Hawkins, Renoir (RA), Paul Klee (Scleroderma), Goya (Meningitis and civil war) and Frida Kahlo! All great achievers who have suffered from horrible diseases.
TumTum, it's not the BC itself, but rather the treatment for it that is the problem. The chemotherapy for my type of BC is a known creator of neuropathy, some of which goes away but some of it is permanent and debilitating. Having neuropathy already I'm like a sitting duck, plus adding new nerve damage to my current level of nerve damage could be very problematic. And the other two treatments also cause neuropathy plus joint pain.
I'm glad to know that you're able to work around your problems from Sjogren's - it is very heartening to hear that.
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.
Okay yes I was not focussing on the neuropathy that sometimes comes from chemo. The only thing I really recommend - as someone else here has too - is that you get an urgent referral to rheumatolgy and neurology for their input so it becomes a multidisciplinary team discussion rather than simply oncology taking the lead. I say this because breast cancer treatment is for a disease that hopefully will be curable for you whereas Sjögren's is the progressive disease so it needs planning around differently. There are treatments such as Rituximab - which is used for Lymphoma. But also there is IViG which is used for demyeinating immune mediated neuropathies such as Guillaine Barres. In the US this plasma infusion is also used for small fibre neuropathy of Sjögren's but not here in U.K.
I think you are right to keep their focus on the long term outcomes rather than only on the immediate business of chasing off the cancer. But this really does require rheumatology input.
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.
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.