Where to go next
Posted , 7 users are following.
Hello, I'm new to this forum but have been reading many of the post. I need advice on where to go next. My problems started in May 2016 with vertigo that lasted 1 day, but intense. The next episode was a month later with vertigo, Nystagmus, facial numbness, pain in my neck on the left side, pain in my left eye and brain fog. I thought I had a middle ear infection, but my doctor thought I'd had a stroke or brain tumor, but it was neither. Since then I have progressed and have had many episodes which include; numbness mostly on the left side of my body, balance and dizzyiness problems, dry mouth, pain in eyes, intense fatigue, sleeping issues, bladder problems and much more. I am being seen by a neurologist that specializes in MS, an immunologist, an ENT and my GP. They found lesions on my brain but they are not typical of MS. So at this point I'm in limbo, my test have all came back in normal ranges and have been told it's not MS and that I'm a neurological mystery and we are waiting to see what happens next. After researching Sjogrens syndrome I feel there is a good possibility that is what I have. Should I insist on having a lip biopsy and Schimers test? And should I seek out a rheumatologist? Any advice would be appreciated.
0 likes, 11 replies
Tumtum1963 Ferni
Posted
Hi Ferni. I came to a Sjögren’s diagnosis via a different route but with identical symptoms and signs to those you describe here. I do now have a positive ANA and also high inflammation markers, IgG and Creatinine. But my specific antibodies are negative so I finally had a lip biopsy and this was 100% positive - despite not much oral dryness presently and manageable Sicca.
Sjögren’s was never suggested in the first two hospitals because my blood was negative and I failed my Schirmers. It drives me mad now when all I read about is to do with dry mouth and eyes.
There is a great international Facebook support group for SS and many there will testify to how multi system this disease often is.
Of course it’s a Syndrome so many do also have severe Sicca and this debilitating aspect somim not trying to denigrate it but for me it really is just the most manageable tip of the iceberg. Mine is very like MS with some Parkinsonism thrown in. It took an enlightened and very experienced rheumatologist to see beyond the Sicca and previous diagnosis of RA.
I can’t say I’m on any effective treatment though and I’ve tried 5 so far. Just waiting to see if the white matter brain lesions have progressed in which case I will be offered a biologic. Otherwise I am drug free and the small fibre neuropathy and ganglionopathy and Parkinsonism type symptoms are progressing slowly but surely. I’m numb and increasingly struggling with muscle wasting in my hands and arms.
I think having clarity is very important but I have to warn you that there are presently no targeted treatment options for people like us. However the more who are properly diagnosed abc post publicly about our plight with the neuro symptoms - the more likely it is that clinical trials will include us and perhaps aote effective modifying treatment will become available to us as it is for those with demylianating forms of neuropathy.
Ferni Tumtum1963
Posted
Thank you Tumtum1963!
When my neurologist suggested SS I thought she was nuts because it shows primary issue as dry mouth and eyes but upon digging deeper I realized it is a systematic disease.
I have tremors similar to Parkinson's and my symptoms largely mimic MS but I do not fit neatly in any category.
I've had the so many test done yet no answers and I'm not sure why my neurologist hasn't suggested the Schimers or lip biopsy. I feel I need to push but I also don't want to be known as pain, it's a fine line.
I currently take Baclofen for my muscle issues and it does help but even with it, I too struggle with muscle pain and wasting. I have taken Nortipleen, an antidepressant for my neuropathy but I'm not currently using it now.
I realized that there is no cure but to have a name for my illness would be helpful.
Thanks again for your comment and know that you are not alone. Good luck with everything and hopefully your lesions will not progress. Mine how changed but not "significantly".
aitarg35939 Ferni
Posted
You might start with the blood test and go from there. I was diagnosed without either lip biopsy or Schirmer's but I seem to be the exception in terms of being diagnosed the 1st time I brought up dry mouth/eyes.
I don't know about the Schirmer's but from folks here I know that you can fail the lip biopsy but still have SS. Just put that into factors to consider.
You seem to have a decent neurologist even to suggest SS. Ask her for the blood test &/or a referral to a rheumatologist. Tho many rheumos give us less than great care, that's still the specialty to officially deal with SS. I have been happier with good internists, tho.
Tumtum1963 Ferni
Posted
You’re most welcome. I know that the seronegative (ie lip biopsy positive) type of Sjögren’s is the presentation most associated with MS-type symptoms. I also know that lip biopsy and blood are the only recognised diagnostic criteria for Sjögren’s whatever anyone may tell you about Schirmers etc. For some the neuro manifestations start long before the dry eyes and mouth. But also, if your neuropathy affects your face - there’s a good chance you may not be aware of how dry your eyes really are. The best test for Sicca (which many drugs and other conditions can cause) is the Rose Bengal or tear break up test most opticians cab run. The Schirmers is very old fashioned and crude and only used by rheumatologists who don’t have the more sophisticated equipment used by eye specialists.
Your neurologist may be excellent but not have suggested the lip biopsy because it’s a bit invasive and can cause problems for some. To me it was diagnostically definitive although my lumbar puncture result, ANA and brain MRI pointed to a systemic process rather than a neuro degenerating one. I actually often just tell people I have MS because my symptoms are so similar and more people know what it is. X
Ferni Tumtum1963
Posted
I had a lumbar punture back in October, but unfortunately it like the blood test did not reveal anything substantial. The lip biopsy may be invasive but if it could be the key to a diagnoses, I feel it is worth trying.
And I had not heard of the Rose Bengal test but read up on it, so thanks for that information too.
Ferni aitarg35939
Posted
Thank you for your input, I've had all the blood test but they have come back negative, so I'm trying to determine my next plan of action. I believe my neurologist is good and thoughtful but she wants to wait until I have another major episode before proceeding. I'm not completely satisfied with that. I have been referred to an ENT neurologist but I'm thinking that a rheumatologist may be a better fit. I have thought about an internist too though.
Tumtum1963 Ferni
Posted
Again - you are very welcome.
For what it’s worth I have three new friends, all previously suspected of having either ME or MS - all lip biopsy positive for Sjögren’s. Unlike me, none of them had +ANA or high inflammation levels - so the lip biopsy must have felt more of a gamble to them than mine did to me. All are now very relieved to have clarity at last so no regrets at all. The lip biopsy is the most diagnostically definitive test and gives other important information as well.
christine26761 Ferni
Posted
You really do need to be diagnosed by a Rhumatologist, most of us on here have, then go from there, their tests are invaluable, I got very bad vertigo 24/7 and and of course imbalance too for over 14 years and it was all down to Sorgrens, most of the fluid in my left ear crystallised, I had seen a Neuro and an ENT, just to make sure it was nothing too sinister it only went a couple of months ago, I was scared at first as I didn’t know what it was, it was a horrific 14 years actually, I do hope you get some helpful answers on here Ferni. Be blessed and have a lovely day💐💐😍😍
Ferni christine26761
Posted
Wow, I'm so sorry! 14 years of vertigo could drive a person insane and I'm so glad it has finally left you in peace. My dizziness is much more subjective now, and not full on vertigo, thankfully.
As for answers, I already feel I've gotten some truly valuable information. God bless!
christine26761 Ferni
Posted
Thanks Ferni, I’m a Christian and had years of people praying for my healing, .then one day in church out of the blue the Pastor said if anyone has a long time illness to pop their hand up, and for people to gather around them and pray etc, I did and a few people from behind me laid hands on me a silently prayed I had a total healing the next morning, it was soo supernatural, they didn’t even know what to pray for, I couldn’t even turned around to see who it was because to turn my head I was too dizzy. You said God bless and I certainly was, I feel soooo blessed indeed.😍😍😍God bless you too.🙏
Tumtum1963 Ferni
Posted