This is my first post and I appreciate that you may not have the answers just looking for guidance. I was diagnosed with Optic Neuritis in February and was put on short intensive steroids in March sleep deprivation the worst! but sight hasn’t fully and won’t fully return. Ophthalmology thought MS. MRI showed lesions on brain Neurologist thinks lupus not MS. Rheumatology dismissive of both and thought just eye related. Ophthalmology have said it’s neurological. Lumbar puncture shows positive oligoclonal bands. I have positive ANA. I’ve had raynauds for over 10 years. Oesto in thumb joints and elbows. Hypermobile all my life. Extensive family history of auto immune conditions. I struggle with fatigue have hair loss constant joint pain. I have rheumatology and neurology appointments next month and am struggling as to what to ask as feel like I’m going to end in a battle of doctor. Neurology quite certain not MS but testing indicates otherwise. I’ve kept a symptom/pain diary
Feeling at a loss and in limbo
Thank you in advance
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Gossygirl76
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hi Gossygirl76, what a nightmare for you! You would think the consultants would put their heads together and come to a conclusion as to what is going on.
I have lupus sle and sjogrens, got diagnosed 6/7 years ago but looking back probably have had symptoms for many many years. I also have hyper mobility but am becoming a bit ‘stiff’ in some of the joints as I get older (67) and now have arthritis. I have neuropathy, the nerves are getting squashed between joints that have no ‘fluid’ in between. I also have the usual symptoms s of fatigue dry eyes etc.
My sister had MS diagnosed at 28, her symptoms to start were constantly dropping things and her walking was ‘rigid’ a lumber punch was what concluded the diagnosis.
My children and grandchildren all have different types of auto immune problems. As you say you too have this situation in your family. Over the years I’ve come to realise, there are many auto immune diseases that I never really realised was part of the ‘auto’ family. You might find you have neither of the conditions but something totally different but is connected to the auto immunity that is in your family genes. It’s good you’re keeping a diary so that you can remember ( appointments are so far apart I forget!)😁
I really hope it’s not too long before they come up with an idea of whats causing your pain and you start to get treatment that will help.🙂
thank you for your reply luckily ophthalmologist has been great and she is leading the charge. I don’t think I would have been seen so quickly and had tests that I have if she wasn’t leading the charge.
hi im sorry for your problems, im also chasing help for years, would like to see ophthalmologist for input as not seen near and rheumy neglectful and I have an interested ent doc trying to help so I guess we are both lucky to have one area of doc pushing, but I understand your limbo and just want to wish you the best of luck and I wouldn't know what questions you could ask but I am learning you need to speak up and advocate for yourself if you get a chance to be heard, I think if time was given to listening there may be a sign or a question they didnt ask that may help , especially when history is missing, I have much especially through covid which is not in any history but in my own pics and diaries which is history they need to know im sure to help them.stay hopeful and ever patient as it seems we have been so , Im hearing a lot of different things mine could be but no definitive and have definitely been playing the long haul but we just got to keep asking questions and speaking up I guess , hope all goes well with next months appointments 🙏
Thank God its not MS...... the differentials could be NMO, neurological sjogrens, lyme disease, lupus, hashimotos encephalopthy, systemic sclerosis and it would appear you might have connective tissue disease if you are double jointed or hypermobile. Were u checked for EDS ? A positive ANA implies an auto immune issue. Up to endocrinologists and rheum now to find which one(s). Stay strong and try not to worry, God has a plan for all of us +
thank you for your reply. I having been asking GP for years re EDS and very dismissive I’ve not actually mentioned to hospital so will do. Fortunately it’s not NMO tests we’re negative for that
I have heard of some people going through opthalmology to rheumatology and getting SLE diagnosis.I have been having eye issues and started having hospital visits for the two around the same time.
Getting covid can play into this. My issues of joint pain and autonomic dysfunction and some neuropathy started before getting covid March 2020. Then after covid had issues start with my eyes..that I had never had before...and a batch of other symptoms.
My heart goes out to you. My cousin’s daughter went through a similar experience. Like you, she started out with optic neuritis. Her mother has lupus. She also had many consultations and blood tests.
This is a very hard diagnostic issue for doctors. My cousin lives in a smaller city, so I called my rheumatologist to see if she should come to New York. He said the most important thing was to see a neuro ophthalmologist. Is that who is treating your optic neuritis? He also mentioned a condition called neuro myelitis optica. That might be what they are considering with you also.
Try to be patient with your doctors. You can’t rush a diagnosis like this. But you can understand their reasoning. Thus far, it sounds like rheumatologist is not seeing other signs that indicate lupus like specific antibodies, kidney disease, photosensitivity. They will be able to explain exactly what their thinking is.
The neurologist has a tough job too - trying to know if your features are MS. The MRIs can of the brain can look exactly the same between lupus and MS. Both can have positive ANA.
I hope this is helpful. I know that your situation is being taken with the utmost seriousness. You have a right to ask your doctors to see experts elsewhere if you would like a second opinion. Definitely make sure you are seeing neuro ophthalmologist.
thank you for your reply. NMO has been ruled out via blood tests. I’ve not seen anyone from rheumatology yet they have consulted via ophthalmology. All good advice that helps me to position the questions I need
I had just reread your post and saw NMO has been ruled out. Seeing the rheumatologist face to face will be great. You will have a chance to ask questions and they will be able to go into detail. I have found, after forty years, the most effective way to get an answer is to ask open-ended questions. You could ask how they explain the positive ANA, as an example. What makes them think not lupus? You will get specifics, I feel confident.
I think the doctors have communicated. This has to be a collaboration.
in the beginning of my ill health, it was thought I had MS, especially as my cousin had died of it in her late 20's, but further down the line, it was Lupus, SLE xx
Sorry you’re going through this. I had some similar signs some years back with positive lumbar puncture and brain mri showing non specific white matter. In end it wasn’t MS and likely not SLE but have systemic sclerosis and sjogren’s overlap CTD - neither even mentioned by rheumatologist or neurologist as possibles at the time. Also there’s Vasculitis can cause similar neuro symptoms. Have a friend with MS and she has optic neuritis but the neurologist and ophthalmologist agreed straight away due to brain MRI as definitive. Best of luck of look up Sjogren’s as a possible too as most have +ANA with this and systemic sclerosis too. Not just a case of either or as rheumatologists and neurologists should know and should be good at working together with your eye consultant.
thanks Megs. I’m feeling very itchy and grumpy tbh but you and Kayhimm have cheered me up as kindness always does. Think the non dissolvable stitches from cutting out my infected portacath 2.5 weeks ago have got imbedded and my delicate skin is having a mast cell grumble now. They need taking out and I reported itching, urticaria, weightloss (diarrhoea) and dizziness a week ago - asked about getting them removed. But because my bloodwork had normalised I’ve only finally got my GP phoning this afternoon - a week later. It’s a good job I tend to get my anaphylactic reactions slowly! 🙄😂 xx
aww thank-you Megs. My own takeaway from life’s experiences (and this post reinforces) is that we have to become our own experts on our own unique set of stuff. Sometimes diagnosis labels don’t matter too much. But if we have rare autoimmune diseases and unusual drug and other potentially life threatening reactions - then we will need our very own individual patient protocols for when things go wrong. GP still hasn’t phoned and so I’ve raided my older drug stash and found some different antihistamines - probably be crashed out zzzzz on floor by the time the guy rings me!😂
I didn’t realise you have mast cell activation issues. May I ask how this was dx’d and which tests were used please. I’m being investigated for the syndrome but my Drs don’t seem to have much knowledge of it 😬😬😬
Megs I haven’t been diagnosed. But every time I end up in hospital with any emergency ie stevens Johnson last year and now this portacath line infection almost causing bacterial encarditis last month - they stick a red bracelet on me and ask me if I carry an epi pen. So I’m waiting to ask my GP to remove embedded stitches and then test me for tryptase and if positive refer me to haematologist for further testing. I submitted an online Gp request asking for this a week ago and he’s still not phoned! If I hadn’t just had 9 horrific days in hospital being moved from ward to ward on IV Vancomycin, I’d phone 111 now instead. But I’ve acquired hospital phobia and would rather take my chances at home than risk going back to hospital again! X
Thanks for letting me know about the tryptase blood test. My EDS Dr is phoning me in a few weeks to discuss MCAS so I’ll ask her then. Good luck with getting yours done
Please let me know how you get on. Take care and try to rest as much as possible 💖💖💖
thanks Megs. Tbh you sound further ahead than me. Gp phoned - perfectly nice as always but refused to take the slow anaphylaxis suggestion further settling for removal of embedded stitches - which a suture nurse removed just now. She managed to gauge out the old embedded stitches but said she’d never heard of slow anaphylaxis either but it was what happened to me with Hydroxichloraquine and another rheum drug, Sulfasalazine - now both listed plus many others besides.
I’m resolved to ask Prof Chris Denton about this when I see him about my scleroderma antibody in July first time. If he seems open then maybe I will find courage to ask him about my theory of EDS competing/ masking Sclerodactyl - what with the hardening/ stretching connective tissue perhaps. With overlaps it seems reasonable theory? I see my lovely neurologist in a few weeks about itching and neck and then my rheumatologist will phone for review while I’m still in London so can update her then. Again I think this whole thing has something to do with over-activated mast cells- but if so it hasn’t shown in my full blood count xx
oh Ted, removal of the stitched must have been extremely painful 😖😖😖 bless you 💖
May I ask if you’re hypermobile, or have been in the past?? This is the first thing Drs look for when investigating EDS As you know EDS symptoms result from formation of compromised connective tissues. As the body is held together by these proteins symptoms of EDS vary widely and the condition is often very difficult to dx I’ve just been dx’d with planar fasciculitis by my GP which is known to be associated with EDS
Good luck and please let me know how you get on 🤗🤗🤗
Thanks Megs. It's hard to say now with everything hardening and tightening due to ageing and Scleroderma (the polar opposite CTD process). But every physio I've seen over the years has waved a hand and said I'm hypermobile. I have severe gastroparesis (also associated with systemic sclerosis) and very slow colon transit, prolapses, scoliosis and my bottom right rib pops out/ dislocates if I try to touch my toes. So I'm guessing I am hypermobile but told my rheumatologist that It would be impossible to diagnose now due to my overlap CTD.
Plantar Fasciitis is very sore indeed. Poor you 😥I had that when young but now have special insoles for mini bunions and Mortons neuromas. They help a lot. Mostly my feet are cold and numb from Raynaud's but also have Erythromelalgia so again there are😉🙃🙄s contrary processes at work! 😃 X
I know what you mean about overlapping conditions, including increasing age, making dx even more difficult 😖
I’ve also had a Morton’s neuroma - and a trigger finger - surgically removed. Amazing how many peeps on this site have these conditions 🤔🤔🤔 do you have details for your shoe inserts please??
sorry slow to reply - can’t help with the make of insoles as mine has long worn off each one! I was supposed to be seeing my rheumy podiatrist ages ago for review and to take moulds for customised ones as my neuromas are nearly 2cm in each foot and I also have Taylor’s bunions (little toes) and operation refused on grounds of too much vascularity (Raynaud’s and Erythromelalgia). But they have been off sick for a while and I’ve heard nothing back from message I left months ago for name to buy new insoles x
ouch ouch ouch 😣 One large Morton’s neuroma was painful enough for me 😣. At least I was allowed surgery to remove it, it’s awful yours can’t be removed.
I also have large bunions - in fact my feet are quite disgusting 😬😬😬. Having tiny feet, a small size 3, doesn’t help either. I have very very small little toes - is this what you mean by Taylor’s bunions???
No worries about sending info about the insoles 💖. I might take up my GPs offer of podiatry one of these days.
Megs - I just saw this about MCAD. I may be able to help you. I was worked up for it by Lawrence Schwartz who developed the tryptase test. Doctors here didn’t know much about the illness either.
As I mentioned to stiff19 he was quite sure just by listening to me that it was automatic dysfunction. Was I fortunate to have him. Could have been easily misdiagnosed forever.
Don’t hesitate to message me. It took a long time to get an appointment so I read a lot about mast cell disorders. I was shocked I didn’t have it. 😅
You may remember that I’ve also been dx’d with ANS dysfunction, not POTs, as my BP didn’t change during the tilt table test. However I did have an unusual reaction of feeling cold and shaking a short time after the test ended. I’ve had similar extreme reactions to physical, and sometimes emotional, perceived stress particularly after my recent knee operation.
My cardio dx’d ANS dysfunction but he thought it remarkable that the episodes lasted quite a long time, hours rather than minutes.
You may remember that I have EDS, which is associated with MCA issues. I must say I’m rather confused about the differences between the two conditions, so I hope you’ll be able to enlighten me 💖
My EDS/genetics Dr will phone me in a few weeks to discuss MCA, but I get the feeling she’s not too knowledgeable in this area and I’d really appreciate any help.
I don’t think I can accurately describe the relationships among these conditions. A few things that may help: POTs is just one form of autonomic dysfunction, which is also called dysautonomia. There are many ways the system can be damaged. I do not have POTs. EDS is associated with MCAD but I don’t know why. Mast cell activation disorder sort of looks like hyper-sensitivity but with negative allergy tests. Dr. Schwartz said my presentation was wrong. People tend to have sudden onset of symptoms, sort of crashing, often with anaphylaxis. It is a newly understood condition and most doctors are not going to be familiar with it. My labs were done at Mayo, which might be the only reliable place here.
What are your symptoms? I had lots of symptoms of MCAD but timing was off.
You will need to see an immunologist, preferably one with expertise in mast cell disorders.
Big thing to know is that mast cells and autonomic nerves talk to each other. Takes good doctors to figure out what the problem is. You need to know, though.
These issues can be debilitating. I was house bound for a while.
All true OldTed. I remembered later an adolescent in our hospital with Sjogren’s with mini strokes and optic neuritis. Very rare in this age group. My eyes are tearing up as I think of her. We all loved her.
Firstly, I'm so sorry you're going through so much. I've been exactly where you are now and appreciate just how tough it is. I never normally reply to these posts but yours struck a chord with me. You see, I have a diagnosis of both SLE and MS. I also have several other autoimmune diseases. Like you, my family history of autoimmune disease is bizarre and my only sibling and I also happen to share MS. 🙄🤦♀️
May I ask: you mention oligoclonal bands in your csf... where they only found there and not your blood work? To what degree of ANA positivity and pattern type are you?
At the time of my MS diagnosis, I was under Rheumatology and my Neurologist felt it was CNS Lupus. My Rheumatologist (thank goodness) firmly disagreed. This was after several MRI scans which all demonstrated more and more lesions, hence relapsing on all scans. I was then sent for a lumbar puncture. This identified oligoclonal bands in my csf only. Like you, I am also ANA positive but because of the bands and having a brother and older cousin with MS, I was sent to see a MS Specialist, particularly as my Rheumy was so fiercely against the idea that my Lupus could be behind my spinal and brain lesions. Speaking of which, do you have spinal lesions at all?
Anyway, my first appointment with the MS Specialist had me diagnosed then and there with MS. I have since met a number of others who have both MS and Lupus. It's rare but not entirely impossible.
I really hope you're okay. It's so hard getting to the bottom of what's going on but please persist as it does get better once you finally know what's what. Sending a hug to you and if I can help at all, please let me know. Xx
thank you for your reply. Oligoclonal has only been mentioned since the lumbar puncture so I am assuming it wasn’t in my bloods. However they also took bloods at that time. This was in a letter from neurology as I’m not seeing them til June. Again I’m not certain on ANA levels as this was advised by Ophthalmologist. These are all good questions though and help me so much in this. I don’t believe I have spinal lesions however the MRI was only of my brain - I could ask for spinal MRI. The lesions and oligoclonal are the only ms symptoms I have which is why neurologist is leading to lupus as I have more markers of that.
Please do request a spinal MRI scan (particularly of your cervical area) and ask them if your brain MRI scan is demonstrating white matter demyelination. If so, then I would be concerned by the fact you have oligoclonal bands in your csf only and not in your bloods. Lupus is a systemic condition which can cross the blood brain barrier but usually leaves traces of bands in bloodwork. Also, even if you do have evidence of Lupus, which it certainly sounds as if you do, it would be worth highlighting to your consultants that it's perfectly plausible to have both. I was fortunate as my Neurologist had come across this before and my Rheumatologist is wonderful and knew something else was at play... not CNS Lupus. Good luck for your June appointments. I really hope you get some answers soon. Take good care x
great points although I’m so sorry you have both. I had matched oligloclonal bands which were apparently confirmation of a systemic process underlying. If bands just in CSF then this would likely be MS. When in both CSF and serum then more typical of sjogrens, sle or Vasculitis the neurologist explained. Not diagnostic in itself but a strong pointer to one or other i believe so gave us good working clue at the time.
Thank you Ted. You're absolutely right to say that matched oligoclonal bands leans towards a systemic condition; that's what I was told, too. I really hope you're okay - I read further up the post that you're having a really awful time of it at the moment. I hope the GP offers something to help. Itching pain of any kind is brutal. 😞 Sending a hug to you and I hope you feel much more comfortable soon. X
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