Anyone with Sjogrens and ms.
I have a rate form of Sjogrens and a new ms dx
No on rebif , ampyra , off adderall (adderrall) and can not take nuvigl because of Sjogrens and joint issues
A big thanks to the forum for such a great resource
Welcome to the forum. When I was diagnosed they repeatly brought up my supposedly dx of Sjoggren's since it is such a good mimic ofMS. I had the Sjogren's dx for many years but always tested as sero-negative which they said happens. Havve the dry eyes and mouth, joint pains, etc.
The deal breaking was a lip biopsy of one of salviatory glands in your lip. This time it was irrefutably NOT Sjogrens, I was told , prior to the lip biopsy, that I could have both illnesses at the same time.
Could ask what type of Sjogren's you have since you were told it was rare?
Thank you I have type Cc RNA rnp
Which was test for at scripps and a test no longer done. So is a primary Sjogrens. My rheumatogist dx with lip biopsy 20 years ago
i Hav host of symptoms with 7 plus brain lesions and spine lesions seen on 3t eye pain optic neuritis muscle twitches balance rt side weakness
Etc. It is a struggle to work with what o can take for the fatigue can not tale adderrall or nvugul them says damages joints I am on rebif and ampyra I also have one sluggish pupil hyper reflexes, electric arm pit shocks
The ms doc I landed on after the same horror stories posted is well practiced and manages cases like mine my lesions are not all in typical
It is very hard to find good articles that outline a differential diagnosis for ms. and ss
I am dx with both ms and ss
That is a very interesting story. There are well documented cases of people with clear MS AND either another MS-mimic which is sometimes a pure autoimmune disease like Sjogren's or RA or Psoriasis. To this I have to comment that it is wretched luck. I'm sorry to hear your story.
I am certainly not an expert in knowing the perils of using one drug or another when there are two primary diagnoses. So I don't mean to be presumptive when I ask if your neuro has considered Amantadine for the fatigue. It is an antiviral med as well as a anti-Parkinsons med, but it is often useful in the fatigue of MS.
Working with MS fatigue can be very hard. The majority of people who leave employment due to MS symptoms do so due to fatigue. That and the cognitive problems (when fatigued) knocked me out of medical practice.
I was able to delay going out on disability for about a year by cutting my hours slightly and by taking a long enough mid-day break to take a nap.
Sugar and processed carbohydrates are best left out of the diet due to their action in causing unstable blood sugar which can cause fatigue. Your MS doc sounds terrific, but make sure (s)he has looked at all the other things that can also cause fatigue like a poorly effective thyroid, anemia and other medications.
I'm not really suggesting this to you, but for me beginning Tysabri has given me a HUGE boost in energy and stamina. Now this is in comparison to being relegated to my recliner 24/7. (Yes, picture a beached jellyfish).
I hope you find a good home here.
The topic of the Differential Diagnosis of MS is one I would like to write about, but it is a vast amount of information. I would only be able to cover the most common of the many mimics.
Wow. You are wonderful to write with such great suggestions. I will ask tomorrow about amantadine and tysabri which I understand is helpful for incontinence I am still learning the lay of the land this forum is a great resource.
Fatigue is aweful and then lay awake. At night
You are the first person, other than myself, I have seen with both MS & Sjogren's. I was Dx'ed with SS around 2000 and SPMS in Jan of this year. My Neuro has me on an immunosuppressant (CellCept 2000mg ) I have been on the CellCept a little over 6 months and it seems to be helping with both the SS and MS. I have noticed that my symptoms ( including fatigue ) have not been as bad...though I am still getting worse... just not as fast. But it could also just be a cycle of less decline and not due to the CellCept.
For many years my PC doctors, Physical Therapists, etc felt I had MS but I didn't get the MS DX until one of my Neuros noticed symptoms during exam that could only be caused by problems in my brain. These included Trimengal Neurology, unequal pupils, Sluring of speach, etc.
The final straw that got me the DX was my Neuro Psych Testing that showed typical slowing of though process for people with MS. Piror to this stuff they felt my SS had CNS envolvment including a narrowing of my spinal cord in my neck.
Uneven pupils, slurred speech, balance, eye pain, fatigue muscle spasm, etc
2years of docs that dismissed obvious symptoms wo ordering MRI till my vision and a neuro doc referreral admitted me for lp and iv steroids
He diagnosed me with ms but left before starting therapy others in the practice were aweful. Dispute 2 admissions for steroid resolving symptoms I finally had a 3t MRI cspine with multiple lesions along with other documented brain lesions
Stress , life chane , no diagnosis, water lesions
It is great to have a an ms center
Thx for your response
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