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
aitarg35939 Lita19901
Posted
Hi Lita
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.
Lita19901 aitarg35939
Posted
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 again!
Tumtum1963 Lita19901
Posted
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.
Lita19901 Tumtum1963
Posted
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.
lily65668 Lita19901
Posted
Hi Lita,
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.
Tumtum1963 Lita19901
Posted
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! 😊
lily65668 Tumtum1963
Posted
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.
Tumtum1963 lily65668
Posted
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.
Lita19901 lily65668
Posted
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.
Sorry for the dissertation on breast cancer!
Lita19901 Tumtum1963
Posted
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.
Tumtum1963 Lita19901
Posted
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.
Lita19901 Tumtum1963
Posted
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.
Thanks for the encouraging words!
Tumtum1963 Lita19901
Posted
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.
lily65668 Lita19901
Posted
Hi Lita,
Everything you say about breast cancer is, of course, true.
I'm going to say something here that will probably outrage most of the women in this discussion.
Have you considered refusing the chemo?
You don't say in your original post what treatment you've already had. For example, have you had a "lumpectomy"? I take your point that cancer cells may already have got loose elsewhere in your body, but then again it sounds as if you have a pretty fierce immune system, and lumpectomy might at least reduce the chance of any more getting out. You're clearly well-informed on all this, so will know that our bodies deal with a constant stream of dangerously mutating cells throughout our lives. It's only when we get unlucky - often through anxiety - or when we fail to give our body the best chances via a healthy lifestyle that trouble arises.
Before the sisterhood comes after me, I'd like to say that I'm not advocating this course of action. I'm not advocating anything, just asking a question, floating an idea. The foregoing is what I'd do in your place. My advice would be different to a 30-year-old woman with young children, as the chances of recurrence in middle age would be too high - like Olivia Newton-John, as you say. But I'm 73 and already past my biblical three-score-years-and-ten.
To put this into context, I've never had a mammogram in my life. I palpate my breasts regularly and would of course see a doctor in the event of any abnormalities. I'd then make an informed decision on whatever course of treatment was offered. I practice what I preach: my body, my choice. We all have to die of something. And I'm not advocating that all women refuse mammography either.
Lita, I'm not being flippant here. All this was said from the heart. If I've offended you I'm sorry. If I've offended anyone else that's their problem.
aitarg35939 lily65668
Posted
FYI, Lily: I decided 5 years ago that I just didn't have to know what that growth was in my thyroid. Let them needle it once & that was enough. They found it by accident.
In the States you WILL have the mammogram or you won't have a doctor.
Lita, this is purely anecdotal but I had a cousin whose breast cancer was discovered on an "I'm retiring" physical. She did a partial mammectomy and a short course of some herbal treatment, at 63. Right at the 10 year mark the cancer came back. She had another great 2 years and then passed, 3 years ago.
Like Lily, I'm not advocating. As an American, I look around and see people demanding body parts from others. I decided long ago that I wouldn't accept or give body parts except in the case of one brother to whom i might've given had he needed. He's dead so am past that. I pray that if I live long enough to need oxygen -- 2 lung diseases -- that I am strong enough to refuse it because everyone i personally know who's on it comes to view it as a massive weight and then a prison.
Here sometimes doctors give chemo as "palliative chemo." In talks with doctors about chemo, it's good to make sure that the treatment is intended as something more than "palliative" chemo.
lily65668 aitarg35939
Posted
Oh dear aitarg - it sounds as if the US medical system is going the same "Stalinist nanny" route as the UK's NHS! I'm glad I don't live in either country.
I think I'd make the same decision as you in the case of the thyroid tumour, provided it wasn't causing any symptoms. I don't know whether you've ever read anything by US Dr. Gilbert Welch. He's quite sceptical of generalised cancer screening. In one of his books he mentions the fact that in a Scandinavian country (forget which one) it was discovered that if you sliced anyone's thyroid finely enough at postmortem - regardless of age or cause of death - you'd find what appeared to be pre-cancerous cells.
I admit your comments about oxygen for chronic lung disease got me thinking. I'd never looked at it that way before, but I see exactly what you mean now. I probably won't find myself in your position as SS only started attacking my lungs at age 70, and this seems to be under control now, but I've taken your sage words on board, just in case. It made me think of something the great French novelist, Guy de M@up@ssant said. (I hope I won't get taken down because of all this name-dropping!) He was a keen sailor, but when heading for the open ocean on his own he always refused to have a life-jacket on board.
I hasten to add that though I don't do routine cancer screening, I'm always very careful to get myself screened regularly for all those easily-treatable diseases that could make my life a misery without necessarily shortening it. That means yearly testing of my intraocular pressure for a start. My mother refused to have this done and went blind in one eye with glaucoma. Then there's testing for blood sugar levels, which my GP orders every six months when he checks my thyroid levels, keeping tabs on my blood pressure, keeping my teeth in order with annual descaling and checks on gum health, and so on and so forth. I think that kind of screening is vital.
beverly39559 lily65668
Posted
I have enjoyed your comments and learning a bit about other Sjorgrens patients. If it wasn't for my weak numb feet and legs I'd have nothing to complain about. Just got back from a 2 mile morning walk. Let's just say I'm lucky I made it home. Last 1/2 of walk bottom of my left foot was so numb I almost fell just walking over a small amount of gravel. Just no feeling. But I did make it home and I'm having a cup of coffee and feeling happy as it's a beautiful sunny morning in Chelan, Washington.
Have a good we everyone. 😎
aitarg35939 lily65668
Posted
I didn't know that about Guy de Maupassant! Brilliant.
Yes, I'm with you on what to test & what to let be. I've been fighting with my latest gp about a colonoscopy. 1 year after the resection due to endo, I let my old European gastro do a colonoscopy. He said I was good for 5 years. We're way past that now. Had he not retired I might've had another one by now.
But he's the only recent gastro here who would ever be so kind as to stop a procedure because the patient started to wake up from pain. I did and he stopped the procedure to reschedule with more sedation or anesthesia.
Given my first remark to my ex & a friend when I woke up after the resection, i.e., if I ever need another abd. surgery, just shoot me because I'm not having it, you can see why I fight the colonoscopy.
But "standard of care" comes into it so any diligent doc will hound me on this. I have to get thru to doc that I have no natural heirs so that no one can sue her for not physically forcing me to get scoped should I die from intestinal problems. From where I sit, I'm extraordinarily and undeservedly blessed/lucky not to have either a blockage or opening in the last 9 years since the resection. Good surgeon! Wise advice which I've followed: "I don't ever want you straining with movements again! Never, as in the rest of your life! Do you understand? Never."
So yes, I'm cantankerous over the "standard of care," which is all about lawsuits.
Sorry, Lita, I've taken us far afield.
Lita19901 lily65668
Posted
Lily - Yes, I had a lumpectomy so I'll need radiation to kill off whatever was left behind. I could have had a mastectomy but it just seemed like too much surgery.
It's funny, but I almost cheered out loud when I read your post! This is exactly what I've been contemplating; in fact, I had DCIS 3 years ago, in the other breast, and refused the anti-hormonal treatment (which may have just come around to bite me in the rear, but oh, well.) I didn't want the side effects of permanent menopause, joint pain, etc. etc. etc. - and that was before the neuropathy even entered into my thinking. I'm pretty sure I had it then, maybe? kinda/sorta? but I never even got that far in my thinking about taking the treatment. It just seemed like much ado about nothing at the time.
This time around, of course, it's not much ado about nothing but my thoughts are the same. I don't want any of it. My sister recently died from Parkinson's disease, and it is the inherited type; my grandmother, my mother's brother and my sister all have had it. My mother did not, but she passed on the whatever to my sister. That is the one disease I am truly terrified of and now I learn that there is a higher incident among those with SS. The family pattern for females is late 60's with a swift and ugly progression and I'd really like to enjoy these next few years without mucking everything up.
If they can come up with chemo that doesn't cause neuropathy (fat chance, really) I'll consider it but probably not the anti-estrogen stuff.
If I was younger - say 45 or even 55 - I'd probably be more proactive, but at 65 I just want to enjoy the rest of my years. My parents both died in their 80's but their last years were not that great,so if I miss some of those, so what?
Thanks so much for sharing your thoughts!
Lita19901 aitarg35939
Posted
Aitarg - my dad was on oxygen and it just prolonged a life that was not how we wanted to live. He eventually refused treatment for congestive heart failure, or otherwise he would have gone into a nursing home. That would have been torture for him (and for the nurses, as he was a really intolerable patient!)
If I had retired at the right age - this year- instead of at 63, I would have been so p****d off! I am so grateful for these past 3 years; I loved my work as a Children's librarian but I love even more having the time and freedom to do what I'm doing - plus no alarm clock!
Thanks for sharing your thoughts, and for telling me about your friend. That is exactly what I would love to happen.
I can't wrap my mind around the concept of palliative chemo. Why would anyone choose that???
aitarg35939 Lita19901
Posted
I was going to say he didn't accept it but now I'm not sure. It's been 10 years. They wanted to take his leg, said he'd have 10 years that way. He said that he & his leg had been through too much sorrow together. We were all shocked by the term palliative chemo, as were several friends with infinitely more experience with chemo. I think he refused it.
I am glad you've thought about all these issues. It does make decisions easier to reach.
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