I am confused..3 false positives?
Posted , 8 users are following.
So, when I first saw my rheum (1st time with any rheum) he said after giving me a check up (no blood work) that I have fibro and he was sure no autoimmune diseases and wanted to see how my Neuro appt went and to see him after.
Saw a Neuro for the first time, he looked at my spotted skin asked a few questions and said he needed bloodwork to confirm but he was SURE I had an autoimmune disese. Then he also dx me with small fiber neuropathy and ordered 2 MRI's for neck and spine.
Following week some tests came back. Positive SSA fro Sjogren's. High ANA level, elevated ESR. Told me I had Sjogren's and wrote me rx for migraines...Cym
Next had an appt with surgeon for my hidradenitits suppurativa (so sick of dr appts by now lol) who wants to hold off surgery 6 months to see how new meds will affect me for my SS and he also states it looks like tests results say I may have RA. I am like seriously???? No one mentioned that. I figure no big deal, I am seeing Rheum for 2nd time tomorrow.
That brings me to today. Saw rhuem and he looked at results, barely said a word to me or addressed my concerns, moved diff parts of my body for "exam" and said ibro again. He says, all 3 test must be false positives. Does not order blood work or nothing. I ask again about my symptoms, especially dry mouth and constant coughing and choking (every day) along with other symptoms and as he is walkingout the door he says to see my GP.
Don't get me wrong, I am thrilled if I don't have SS or RA or SLE!! BUT, I want to know what is wrong with me. The only thiing rhuem said at both meetings is he thought MS. He asked me what Neuro said and I told him SS. He said no, I do not believe tests and you are sure no ms? I said no and that was it. I am not going to him again. I live in a small town but even if I have to drive will look for another rheum I guess.
WHo would you believe? The expert, or the blood tests, neuro, and surgeon? Is it possible to have 3 false positives in one set of blood tests and should rheum have done another set of blood tests? I am curious for any opinions. Thank you so much for reading this 
2 likes, 51 replies
Tumtum1963 tj268
Posted
Oh no. Before I read your post I thought my story was too random to be anyone else's but it seems I was wrong!
Mine isn't quite like yours but there are lots of similarities - bar the Fibro which I think only hasn't been landed on me because it would make previous medics look deranged and irresponsible in the diagnosed diseases and their treatments to date!
So here's the final upshot with me. I've gone from RA (five years of treatment) to undiagnosed and misbielieved (steroids and 4 DMARDs turned my antibodies negative) in a five year period. When asked what my very high ESR and quite high CRP meant then - the rheumy responded "haven't a clue - possibly an endocrine problem - possibly cancer...?". Whey asked what paired oligloclonal bands in spinal fluid meant (we go through these invasive procedures for the sheer pleasure of..?) he replied "don't know - not my area of expertise I'm afraid". So hang on - if I look this result up to find out what the latest form of torture has yielded I see a list that includes MS, Vasculitis, Sjogren's Syndrome and Lupus. Call me old fashioned but I did think these last three were rheumatic diseases? But he's adamant "you possibly did have RA for a while - although I'm calling it polyarthritis unspecified for now - (having made disparaging comments about previous rhem who diagnosed this!) but you DEFINITELY DON'T have a connective tissue disease"
Six months later ANA rolls back to a new rheum in a new hospital as clear positive with a rare pattern. I suppose to myself that it might be a false positive - knowing my bad luck. But ab oral consultant persuades me to do the rheumies bidding and have a lip biopsy to rule Sjogren's in or out. It comes back with a resounding and unequivocal positive for every one of the tiny salivary glands. Bingo!
Now rolling through a succession of tests to see if in my case it's affecting my CNS as well as my PNS and rule out Lymphoma. Here's a link that your numbskull rheum might benefit from looking at.
http://ard.bmj.com/content/63/6/616.full
And another more recent one:
http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/
So I recommend driving the extra mile... Best of luck.
tj268 Tumtum1963
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Oh Lord Tumtum!!! I am so sorry you have been going through all this uh...junk (trying to be polite!) What a load of bull to be put through all the testing and dianosis and have to go back and forth. Like you this is what I am going through minus the spinal tap and lip biopsy. Both of those had to be awful! I did make anappt for tomorrow or I should say today to speak to my GP abou tit and my choking.
I am sorry I didn't get back to you earlier..been a bit exhausted. After catching up here I will read the links you sent me
Your Dr sounds like my rheumy...god complex s my sister calls it. I tend to call it stupid stubborn complex and again I am trying not to swear! You know it took years f MRSA tests and a million I don't knows before I dx myself with my Hidradenitis Suppurativa and when I did all the Dr's went "OH!" yes you have that! Say what they will about the internet but the info I find here greatly helps me just as much as the great people I meet on sites like this for support!
Hoping to talk to you soon and wishing you a pain free day
Your friend from the States
tj268 Tumtum1963
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mandy95 tj268
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Dry mouth and cough are classic with Sjorgrens, and I was told by my RA who specialises in Sjorgrens that 50% of us also has fibromyalgia which is what I have. What medication did they put you on? You do not mention any issues with your eyes?
Regards,
Mandy
tj268 mandy95
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Hello Mandy, I did not receive any meds from Rheum because he says I do not have it and my ANA, SSA/Ro, and ESR tests are all false positives and he didn't even retest me. My Neuro put me on Cymbalta and Nortiptyline for migraines and small fiber neuropathy. He and my surgeon for HS assumed I would be getting meds from him for SJS.
It is very frustrating and I just want to feel better! I have so many symptoms and 3 positive tests so I do not understand thi guy and will get another opinion.
tj268 mandy95
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Oh oops...rheum said the Cymbalta would help with my pain from my fibro since neuro prescribed it for pain anyway. He really didn't say much to me.
Tumtum1963 mandy95
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They are the classic symptoms Mandy. But according to the BSSA magazine - Spring issue of this year - some present with neurological symptoms long before they are affected by dry eyes and mouth. This neuro involvement is not same as Fibromyalgia. I don't have Fibro but I do have small fibre neuropathy as a key symptom of my Sjogrens plus Sicca and it is progressing - and now leading to probable central nervous system involvement.
Dry eyes and mouth and Fibro are not diagnostic for primary Sjogren's by themselves - and a good rheumatologist should know this.
Tumtum1963 tj268
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My neuro did same with me last year re Norotriptyline and Cymbalta (had a terrible time getting off both) although no mention of false positives or Fibro as my ESR and other protein tests are always very high bad you don't have false positives for five years. The definitive test for Sjogrens was the lip biopsy for me as you can't have false positives with this. For small fibre neuropathy it's the skin punch biopsy from above ankles to check for damage to the tiny nerve fibres. If this is found then I believe they have no choice but to offer you immunesuppresssant medicines or IViG.
tj268 Tumtum1963
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Hello Tumtum, with my small fiber neuropathy the test I had was with a sharp stick. He took it and started at my feet or ankles, I can't remember and kept poking all the way to my knee and repeated on my other leg. Is that the punch test you mean?
The neuro said he beleived bloodwork, it was rheum who said they HAD to be wrong and were false positives.
It was like he was so sure I had MS and since it wasn't said..you have fibro. Said there was no way I had autoimmune disease. So did Cymbalta and Noro help you? I was told I could take Hydrocodone with them if needed. I am on that for Hidradenitits pain. That disease is up in the air to whether it is auto immune or not.
tj268
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Tumtum1963 tj268
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My story with links has been published here now - sorry about the typos and the letting off steam! I was only vindicated in my belief that I have had Sjogren's as my primary disease, very recently. Still wallowing a bit on fury and hate the idea of others such as you and Mandy going through similar stuff.
To answer you question I have had spells of dry coughing and wheezy voice with tickly throat and am in one of these stages just now. The only way I seem to hold onto moisture is to keep sipping at herbal teas and water to alleviate the dryness of my throat. I don't choke much but I find it very hard to swallow sometimes. I believe raw coconut oil used internally and externally are very helpful with the systemic dryness of Sjogren's.
I've had this extreme dryness and cough all of my adult life and much of my teens and even my childhood. So I take being dry for granted and have learned to adapt. I use eye ointment Lacrilube at night and hyloforte drops during the day. I try not to wait until my eyes are dry enough to warn me I need these but sometimes I use drops hourly. Same for my mouth - which isn't too bad in my case. I get all topical treatments on prescription because of presumed secondary SJS previously and have additional treatments added to my repeat list.
I have learned to live with the widespread neuropathy but struggle a lot with disequilbrium/ dizziness, flourescant lighting, patterned flooring or uneven ground. I also struggle with chronic constipation and gynae issues. The bowel issues may be part of Dysautonomia I believe that I suffer from. My temperature regulation is pants and I have fevers and sweats which is why I've just been scanned for lymphoma.
Having a diagnosis that no one can dispute has been the best thing out for my confidence. I think the worst thing for me has having my symptoms ignored or doubted - uncertainty is a terrible thing. I hope you can find answers soon and that my story helps you in some way.
SjoDry tj268
Posted
A new doc may be in order. Most Rheumy's would start you on Plaquenil, and also treat your other symptoms. Sjogren's can look a lot like MS and is often misdiagnosed as such. I would try to travel to a doctor affiliated with a university. I am not sure where you are or how far you may have to travel, but it will be worth it to find a doctor who is very familiar with Sjogren's.
Best of luck to you.
SjoDry
gonnabewell tj268
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gonnabewell
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I take a LOT of omegas....
Tumtum1963 gonnabewell
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I've heard humidifiers are pretty much essential for people with SS. I was going to hunt one down tomorrow because I'm sick of feeling hoarse, struggling to swallow and feeling mildly breathless all the time. I don't suffer from asthma so assuming this is my pSS. Anyone know of good make small humidifier? - portable ideal as travelling a lot.
gonnabewell Tumtum1963
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Id be interested to hear what you find
Tumtum1963 gonnabewell
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Thanks - think I'll start a post to get some suggestions of good makes.
tj268 Tumtum1963
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tj268 Tumtum1963
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Found this on Amazon UK. Free shipping also.
PREM-I-AIR Humidifier Ioniser With Built In Antibacterial System
There are also some that let you add essentia oils like Eucalyptus or Lavendar
tj268 gonnabewell
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Tumtum1963 tj268
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Thanks I've saved this info for a rainy day - middle of moving house just now so nowhere for deliveries etc but will see how you get on. I've read that they can create patches of mould on ceiling and the ones with filters need changing weekly. Kind of put me off?
tj268 Tumtum1963
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I have heard good and bad but mostly good if not run every day. If I can get one from my review sites for free I will try it out for sure and let you know how it goes. Otherwise it might be a week or 3 befoore I actually pay for one lol
Tumtum1963 tj268
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gonnabewell tj268
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