Hi everyone, I really don’t like the new site much and I don’t know if anyone will find my post, or feel motivated to navigate the new site to reply!
I am actually doubting my MS diagnosis! In a nutshell:
Diagnosed with just 2 spinal lesions 3 years ago after a ‘relapse’ involving full bladder retention, loss of use of right leg, drop foot and other bits and bobs.
According to MS team NO progression in my MS either on MRI or otherwise.
Feel absolutely dreadful, getting worse by the month.
Since January, have developed awful joint pain in toes, feet, ankles, heels, knees, hips, elbows, wrists, hands and fingers. Burning in legs and feet is now constant and far more intense. Struggle to swallow often and food seems to just sit for ages. Have Trigeminal Neuralgia and widespread facial pain affecting mouth, throat, tongue, cheeks, nose etc. (since last year and MS team say not MS related) Digestive system slowed right down as has bowel. Low in Vit D. High Creatinine in bloods which GP links to muscle damage/disease. Muscles in legs so weak I struggle to get up from sitting or from kneeling on the floor. Can barely move for first hour after getting up and knees give way when coming down stairs! Referred to Rheumatology although no RH markers, negative bloods for Lupus.
BUT dentist has commented for years on lack of saliva. Teeth and gums dreadful last couple of years. Optician recently commented on dry eyes. Have 20 year history of unexplained hives on fingers.
Sjogrens… symptoms include all of the above. It can cause peripheral/vascular nerve damage as well as spinal lesions due to CNS damage. It can show Oligoclonal bands.
I’m actually wondering whether I even have MS or whether it is Sjogrens , which has been documented as quite often being mistaken for MS!
MS team adamant that nothing on MRI explains any of this ‘deterioration’ being due to MS. It really scares me, because, if it is Sjogrens, then I should have been on a different treatment plan.
Sorry for the lonnnnnng post, but I wondered if anyone here has Sjogrens and if so how it showed itself/how it was diagnosed?
Hellow MM, i found you easily. Look this site is ok i am used to it now. I keep saying you go to the 4 horizontal lines top right and it reveals all the new posts ok.
stick with it and you can tone down the background.
OK there is a possibility you can have BOTH. I have dry eyes blepharitis and dry mouth. I have had lupus tests etc and i believe if you had S you would have markers. My daughter is beiing tested for it actually. he has her scan on her glands today. (swollen), dry eyes, fatigue but was diagnosed with fibro.
we have auto immune in our family.
To control my dry eyes i use hycosan as prescribed by my optician, its not a medicine its natural and it works, and my daughter uses it too. I dont believe it is the same or similar to MS, yes if you get the secondary Sjögren’s it can a little but not to an extent.
You could have PPMS or just be in a remitting stage of your MS. You can have both conditions it isnt unusual.
I think you need to get the Sjögren’s investigated if you have no markers i doubt its S my daughter has the markers.
BUT dry eyes can come with MS, as well.
Multiple sclerosis (MS) . This demyelinating disease can lead to severe dry eye. In MS, poor corneal sensory impulse conduction can result in insufficient tear production, and lagophthalmos-associated DED can occur due to poor motor control.[4]
These patients may have limited ability to instill drops and perform lid hygiene properly; thus, punctal plugs, humidifiers and in-office blepharitis therapies may be crucial.
I have to clean my eyelids everyday a specific way. its hard work but necessary. Mine is so bad in one eye now i have ingrowing eyelashes.
You could have a combination of both. I have dry mouth too and my glands swell. I have had blood tests no markers for that but years back at the start had markers for lupus. but second test negative. I think once we have one auto immune we can get more. Also have you got thyroid issues as this can trigger off stuff too.
I will let you know how my daughter gets on.
S is quite rare. but your symptoms sound like MS with a trace of S. I lost my teeth because i had a rare reaction from my gums they literally attacked my teeth and triggered something which made it impossible for me to be healthy with the teeth in my mouth lol. weird stuff happens. now that all started when i was 18.
If you have been referred to rheumatolgy and they found no markers etc ask if you can be tested for sjogrens, but who suggested it? they should be referring you. xxxx
Update - finally have Rheumy appt end of August 
Meanwhile, GP won’t help with any alleviation of pain etc and says its up to Rheumy, and MS team say it’s not MS related in their opinion.
So climbing the walls somewhat. Our GPs still won’t see anyone face to face either - I now have burst capillaries all over lower legs which really hurt!
Grumble grumble… How did your daughter get on Crazy Chick?
same as you. she is still waiting to see rehumy. had an xray on her knee and now they are saying its down to arthritis, and they have no idea why she has the gland issue. so its a bust. they wont give her anti inflammatory as they have to resovle her bruising issue which is still waiting to see someone about. Her bloods though were not showing as high a rate of inflammation or whatever they call it. she is still signed off work.