After 12 years we are back to going through all the MS stuff again to rule it out. I am trying to educate myself so I can ask good questions in regards to what is seen on the MRI. I have a "probable" sjogrens diagnosis secondary to celiac disease based on a positive schiermers test, a suspect lip biopsy and other connective tissue stuff...raynauds, livedo recticularies, hair loss, facial and scalp sun sensitivity, raised CRP often but no positive blood markers that typically point to sjogrens. I developed a vascular type neuropathy 12 years ago that was painful but in time responded to low doses of aziathiaprine and stayed fairly quiet for many years. I had facial nerve involvement with that as well and it really bothered my left quad muscle. Now I am looking for good info that might help me prepare. Can you have a lesion on the spine or areas of inflammation and have it be sjogrens? My rheumy doesn't seem to have a lot of experience with sjogrens and he just says the radiologist can decide what he sees...makes me kind of nervous. Input appreciated, even just a link to look for. My MRI isn't until Sunday night, which is better than 3 weeks ahead they wanted to book me for, but still a ways to wait if this is a CNS type flare.
I nee to post this in two posts due to the limit on the number of characters per post: So this is post no. 1:
"CNS or Central Nervous System complications of Sjogren's syndrome, Dr. Julius Birnbaum, Johns Hopkins:"
"Myelitis"
"Patients with Sjogren's syndrome may have 'myelitis,' which is inflammation of the spinal cord. Myelitis can cause weakness, numbness, and difficulty with urination and/or defacation. Myelitis can present quickly (i.e. within hours). However, symptoms due to inflammation of the spinal cord may evolve more slowly, progressing over weeks or months. This slower progression may be difficult to distinguish from Multiple Sclerosis (MS). Unfortunately, patients with myelitis and Sjogren's syndrome can be misdiagnosed with MS. Appropriate tests, which may include spinal tap and MRI of the brain/spinal cord, can lead to diagnostic clarity. The importance of accurately distinguishing between Multiple Sclerosis and Sjogren's syndrome is of paramount importance. MS and Sjogren's have completely different treatments. The approved treatments for MS are ineffective for Sjogren's syndrome, and may actually lead to ?flares? or worsening of Sjogren's syndrome.
Patients with Sjogren's syndrome may have another autoimmune disorder called 'Devic's syndrome,' or 'Neuromyelitis Optica.' Neuromyelitis Optica (NMO) causes inflammation of the nerves connecting the eye to the brain, or 'optic neuritis,' as well as myelitis. The pattern of myelitis which can occur in Neuromyelitis Optica is much different than Multiple Sclerosis. Typically, the myelitis in Neuromyelitis Optica is more severe, causing severe weakness, and may cause future relapses.
Again, the treatment for Neuromyelitis Optica is much different than MS. Patients with Sjogren's syndrome, who are diagnosed with MS, need to be skeptical about receiving these dual diagnoses. Below, I offer some helpful hints, which may especially cast doubt on the diagnosis of MS.
Red flags for a diagnosis of Neuromyelitis Optica
Answering 'yes' to the below questions should especially raise consideration for the diagnosis of Neuromyelitis Optica.
(1) Have episodes of myelitis been especially severe. (i.e. associated with inability to lift the arms or legs in the air)?
(2) Have there been multiple relapses?
(3) Have episodes of myelitis been associated with 'optic neuritis,' or inflammation of the nerves connecting the eye to the brain?
(4) Have MRIs of the spine shown inflammation which extends beyond three 'back bones' or vertebral bodies?
Any patient with Sjogren's syndrome, a history of myelitis, and answering 'Yes' to the above questions should have a blood test which may assist in the diagnosis of Neuromyelitis Optica. The name of this blood test is the NMO-IgG antibody, and is performed at the Mayo Clinic. It detects Neuromyelitis Optica in 70 percent of cases. This means that it is not a perfect blood test and will be negative in 30 percent of cases. In such cases, consultation with a neurologist with training in neuroimmunological disease is crucial."
Post no. 2, more of the article by Dr. Birnbaum:
"Red flags against a diagnosis of Primary-Progressive Multiple Sclerosis"
"Multiple Sclerosis is not a single disease, but has different presentations, with different tempos. The most common type of MS is called 'relapsing-remitting' MS, and is punctuated by episodes of unequivocal deterioration (called 'flares'), versus periods of clear improvement and quiescent disease. However, a different type of MS may be confused with Sj'gren's syndrome. This pattern is called 'primary-progressive' MS. In such cases, the crescendos of worsening and improvement typical of 'relapsing-remitting' MS are not evident. Instead, there may be a slower and more gradual period of deterioration, reflecting inflammation and damage in the spine (i.e. progressive myelitis).
Patients with Sjogren's syndrome who receive a dual diagnosis of primary-progressive MS need to be especially vigilant about diagnostic misimpression. Specifically, there is no effective treatment for primary-progressive MS. Any patient with Sjogren's who receives a diagnosis of primary-progressive MS deserves a trial of immunosuppressant medication which may be helpful if progressive myelitis is occurring because of Sjogren's syndrome.
It is often difficult to distinguish between primary-progressive MS and Sjogren's disease. Patients with Sjogren's syndrome may have less brain disease on MRI compared to patients with primary-progressive MS. In addition, patients with Sjogren's syndrome may have lesser amounts of protein in the spinal fluid, called 'oligoclonal' bands. Therefore, any Sjogren's patients with a diagnosis of primary-progressive MS needs to have brain MRIs, as well as a spinal tap.
Conclusions
The most common CNS complications of Sjogrens syndrome include myelitis and optic neuritis, which are syndromes that can occur in MS. Because of this symptomatic overlap, patients with Sjogren's syndrome may erroneously receive a diagnosis of MS. Because the treatments for MS are not only ineffective for Sjogren's syndrome, but may actually precipitate flares of Sjogren's disease, accurate distinction between MS and Sjogren's syndrome is crucial. When the myelitis is particularly severe, associated with optic neuritis, or involves extensive regions of the spine, then the diagnosis of Neuromyelitis Optica should be considered. Spinal taps and brain MRIs may help in the distinction between primary-progressive MS and Sjogren's syndrome. All patients with myelitis in the context of Sjogren's syndrome deserve a trial of immunosuppressant therapy."
http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/
Here is a link to the slides from a presentation by Dr. Julius Birnbaum. The section on Sjogren's starts at slide 18.
https://www.ncrheum.org/wp-content/uploads/2015/03/Neurological-Complications-of-Lupus-and-Sjogrens-Syndrome-Birnbaum.pdf
Much good information to go through - thanks very much!
an MS diagnosis is one of exclusion. There is no definitive test.
Be sure to also consider Lyme disease as a possibility. Igenex Lab is the best. The lesions on the brain can look the SAME in Lyme and in MS.
www.everydayhealth.com/multiple-sclerosis/symptoms/conditions-commonly-mistaken-multiple-sclerosis/
www.dailymail.co.uk/health/article-2343062/Mother-diagnosed-MS-facing-life-wheelchair-cured--discovered-symptoms-TICK-BITE.html
I suffered many tick bites as a child so I will remind my rheumy of that. I had a brain MRI in March to check for an acoustic neuroma (due to the ear ringing) and nothing had changed since 2003 2 small white area that are considered UBO's. Now they are checking the spine but that was clear in 2003 as well. I am just hoping they can do something for the discomfort as my lips are evening burning today. To think on June 1st I felt really normal and it has changed slowly since about the 10th. Life is crazy - I am trying to feel positive and get this turned around. Many thanks to all.
A rheumy will ignore it. If they even take it seriously, they will run a test through whatever lab they use. It likely will not pick it up .. but you COULD get lucky.
I have found that the rheummy's I have seen don't take Lyme's disease very seriously as a whole, but it seems like they sure should as that is an actual toxin. Anyways, after feeling a lot of pain today, especially in my legs the rheumy says that if the MRI is negative then he suspects small fiber neuropathy and time for another skin biopsy. He was pretty insistent that sjogren's is mainly dryness and the nerve stuff is almost non existent and idiopathic- not what I have heard on here though. It is weird to have most of a day when you hurt and feel so bad and then it shifts so it is much better...and I know I am not crazy. I found out today there is another health and fitness teacher in the district that has had sjogren's for many years and she has some crazy symptoms that come and go as well.
Another thing about Lymes...a few years ago I had a doctor send my labs to Igenex for Lyme testing. Several bands came back positive. After talking with about 20 specialist, they all concluded that Autoimmune diseases can interfere with the lyme testing and actually make these markers positive. I didn't recall being bit by a tick? very confusing?
I think Sjogrens and my hormone issues from menopause causing most of my issues. Most of my major issues started
shortly after a total hysterectomy and instant menopause. You would be surprised how many things hormones, primarily menopause can effect, including the CNS system.
Gursie
Gurs... doctors do NOT want to find Lyme because they do NOT want to treat it. You have to find a doctor who specifically treats Lyme.
Other doctors will find reasons to tell you the test results are "false positives."
Not everyone remembers or ever sees the tiny tick .. the size of a period in this sentence.
Hello,
I went through all the tests and procedures that are being discussed here, because my Sjogren's presented with MS symptoms and I was almost sure I had MS. Here are a few observations - I hope this helps.
--When you have a head/brain MRI on a suspicion of MS, they typically take a lumbar puncture/spinal tap at the same time.
--There is a standard suite of tests that are performed on spinal fluid samples. As I recall, about ten or fifteen diseases are tested for, including syphilis which surprisingly can lay dormant for up to 50 years before becoming active! Back to the subject, lyme disease is on the standard suite of tests. People obsessed with Lyme disease may question the accuracy of the test, however, the point I want to make here is that, if you have a spinal tap, you are automatically being tested for lyme disease.
--The suite of standard tests that are typically performed on spinal tap samples makes this a great procedure if someone is searching for a diagnosis like I was for years. I had to fight hard to get it against huge resistance from an evil team of cost-minimization HMO doctors.
As it turned out, this combo procedure was the Golden Key I sought so desperately for so many years, as it provided critical information that convinced doctors that I was in fact extremely ill as I had been saying for years, and indirectly but quickly caused me to be correctly diagnosed with Sjogren's. If you are seeking a diagnosis and have symptoms like MS or auto-immune, the MRI lumbar puncture (spinal tap) combination can be invaluable. Remember, negative results are almost as valuable as positive ones in seeking a diagnosis, because you can rule things out and move on.
--MS is a disease where the myelin sheath is eroded from the outside of nerves, causing then to short circuit. This can be potentially be picked up on emg tests, depending on where the myelin is missing.
--In MS, there are frequently white-matter hyperintensities that are readily visible on the FLAIR Series of the MRI. In MS, these are typically grouped into a specific area on the rim of the corpus callosum. If white-matter hyperintensities are grouped here, then that is almost certainly caused by Multiple Sclerosis. MS is not a disease of exclusion - there is plenty of clinical evidence in a positive diagnosis, there is just no "one and done" test for it.
--In repeat checkup MRIs at 6 month or year intervals, MS lesions may disappear because the myelin can heal, although new lesions may form at the same time. So in MS, the MRIs over time provide a definitive diagnosis of MS, due to disappearing lesions, and grouping of lesions along the rim of the corpus callosum.
--In Sjogren's, white-matter hyperintensities may, or may not, be present on the FLAIR series of the MRI. If they are present, instead of being grouped along the corpus callosum, they are typically diffusely distributed throughout the white matter. Unlike MS grouped and vanishing lesions, Sjogren's lesions are non-specific, because identical lesions are seen in all four major types of dementia, and also everyone gets some lesions in their white-matter as they age anyway.
--Sjogren's lesions never vanish - they are dead tissue instead of missing myelin.
--I have been though all of this, and more, including an eye problem Odyessy. I am diagnosed with Primary Sjogren's with Secondary Central Nervous System Vasculitis. I did visit John Hopkins while on my horrendous Mystery Diagnosis Odyssey, but that is a small part of a very long story.
--MS is absolutely diagnosable, however, it is one of those illnesses with non-specific symptoms that takes years for a team of doctors to narrow down the suspected diagnosis to MS, so that you start getting the definitive suite of tests that diagnose MS. It is most certainly not a diagnosis of exclusion.
One enormous problem is that one has to have continuous health insurance for many years to chase a MS diagnosis to conclusion. That together with the fact that the tests for MS, such as repeated MRIs and spinal taps, and repeated emgs, are expensive and time-consuming for the ordering doctor to manage, contributes to the fact that, in my experience, I estimate that only half of the people who say they have MS for years or decades have ever had it conclusively diagnosed.
If anyone is interested, I could continue commenting. Please let me know, and I am quite willing to share additional comments. I don't like writing long replies that no real person is interested in reading.
SJSman just gave an excellent post.
I can sympathize with the frustration of trying to ascertain the cause of so many symptoms; they leave some Dr. scratching their heads ( which makes us even more baffled, concerned). Hey, I want my life back.. it wasn't perfect, but it was mine!
At first Drs. considered MS due to symptoms, had lyme done, etc. On and on..
Worked with students and was having a great deal of difficulty due to muscle weakness, overwhelming fatigue, cognitive dysfunction, constant nausea,bouncing off walls in the morning, etc. Would go home and crash.
Two years ago, after many years of treatment (plaquinel and pilocarpine/ Rheum, other meds for Fibro pain and then from Neurologist) went to Sjogrens Center and new protocol. No symptom mentioned was overtly dismissed, some discussed, some new to me that had never been noticed.. such as
livedo recticularies, other tests done (D and B defiecient.. theraputic doses helped with bone/muscle pain)
Methotrexate was new treatment protocol and for me I have found that while not gone the ringing in my ears is less ( goes up a pre-flare.. so I back down) and have been able to lower doses of other medications. We are discussing option of injections.
Sjogrens can show white brain lesion in brain (google images)
During the course of this journey (10years) I have gone to the ER 3 times.. and they have always been for " stroke-like" symptoms. Which can be similar to MS. Paralysis of limb (left leg), lose of control of eye movement, room going dark and tilted, stopping at red light in town and not knowing where I am, just crazy, bizarre stuff. Stuff which if it were not happening to me, I might not believe. During a severe flare even the sound of someone coughing felt like highly unpleasant electric waves going through my brain.. so overall, systemic inflammation :(
So far with the new protocol things are holding.. not the old me.. but good. The hair loss stopped and some is growing in.
I am wishing you well with the MRI.
I would consider sending labs and MRI to a Sjogrens Center for review.. can't hurt.
Even though I was originally seeing the Chief of Rheum @ a teaching institution I went for a second opinion and I am so much better for it and the Chief Rheum learned from it as well. The Chief Rheum I know was being conservative in treatment, but did do reseach after seeing the improvements and remarked that some pts. present with Neuro symptoms first, which was my situation. Or at least they were more pressing.
Effects of low dose methotrexate on relapsing-remitting multiple sclerosis in comparison to Interferon ?-1?: A randomized controlled trial
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3214348/
My white matter abnormalities are considered to be consistent with celiac disease (not off gluten in early 2000's) and sjogrens are I have had them looked at by many specialists and non say MS. That said, I am relieved to have it all being checked out as I want to match up the treatment with the problem - and the diagnosis has never totally made itself clear. I won't do a spinal tap unless it is really necessary as I have a chiari malformation and the pokes leak spinal fluid even with a couple of blood patches and recovery is awful. The dr. originally wanted to put me on methotrexate and I asked for Cellcept because of the hair loss from methotrexate. I would now consider the methotrexate even with the hair loss as having my function is bigger than everything else. I don't have any weird neuro symptoms besides the ear ringing and that seems to worsen when I consume salt or citric acid (sounds crazy I know) and I have mast cell issues of some type as well and try to eat low histamine. The last 12 years there has been no change on my MRI's, so hoping for the same tomorrow and then maybe a direction to go in. I so appreciate the great information on here and how autoiimune effects everyone so different. My TSH has been high (over 10) for over a year and I am reading that could cause issues. I am told they can't treat it until I am off the prednisone which I wonder could not help my flair. I will update and ask more questions. Dr.'s don't always like lots of questions (although my rhuemmy is patient and answers well) the neuro not so much, but this is my life and I won't put my head in the sand. Hoping everyone has a good Saturday.
Approximately 20% of spinal taps will show active Lyme. (even when it's present)
Quietdynamics, where did you go to a sjogren's center? I am close to Seattle and Portland and wonder if there is a center there? I appreciate your (and all the suggestions) presented on this forum!
From QD: In Sjogren's, white-matter hyperintensities may, or may not, be present on the FLAIR series of the MRI. If they are present, instead of being grouped along the corpus callosum, they are typically diffusely distributed throughout the white matter.
My MRI with contrast dye from 2010;
There is mild periventricular white matter gliosis with scattered foci of increased signal through the
periventricular white matter of the frontal lobes as well as within the subcortical white matter of the right frontal lobe, the
largest measuring 4 mm in diameter.
Brain damage from constant inflammatory conditions.
No wonder I'm so crazy.
Hugs, Elaine
Hello TRC,
I recently found out that there is a doctor who operates successfully to correct the chiari malformation, would you be interested in that? I was shocked that anyone can, and is currently, repairing this so well, however, this type of repair operation may be common knowledge for all I know. I suspect that this type of repair is only new to me.
Also, I strongly suspect that your lips are burning due to either the common form of trigeminal neuralgia or perhaps more likely in your case a pinching of your trigeminal nerve, originating in or close to the upper vertebrae of the neck in the general vicinity of your chiari malformation and the associated complicated geometry of nerves passing through that area that you likely have.
In your case, the cause is kind of irrelevant in comparison with any treatment that could give you relief. Neuropathy can drive you nuts for real, as you probably already know quite well. Fortunately, gabapentin works amazingly well for this exact type of pain, so perhaps you would like to try that. I suggest sticking with it long enough to get the dosage up to 900 mg/day or more, as a moderate dose or greater may be needed to treat severe nerve pain.
If you haven't tried this, you may be delighted to discover that gabapentin is an extremely effective treatment for that condition and that exact type of pain. Yes, it may have some mild side effects, but so what? If it gives you relief and the side effects are mild and well tolerated, you probably won't care and will just put up with any gabapentin side effects without any complaint - rather you could simply be grateful for all of it.
I assume that you took the standard gluten intolerance test at your doctor's office to diagnose the gluten problem, is that correct? I am talking about the simple blood test for gluten intolerance.
Moving on, I would comment that virtually no Rheumatologist is comfortable working with the Neurological complications of Sjogren's or any other auto-immune illness. In fact, this subject is sufficiently complicated that most Neurologists so not claim to be competent in this specific speciality. There is always at least one Neurologist in each region of the country who gets all of the auto-immune Neurologic work via referral. Of course, huge cities like New York undoubtedly have a lot more than one Neurologist who is competent in this area.
The neurologic effects of auto-immune illnesses are ultra-complex and tricky to diagnose correctly and treat effectively. This is one reason why there are (relatively) so few neurologists who have this exact specialty. It may also earn less money than other areas of specialization, such as stroke treatment, etc., I don't know.
Good luck, and let us know how things turn out.
Jazz,
I went to top Lyme doc in Michigan. He is the one who sent labs to Igenex and told me I should be on antibiotic therapy, but I decided against it for time being because I have severe systemic yeast and my stomach cannot handle antibiotics. I know for a fact that I do have SS(since 12 years old), not saying I still cant have Lymes either? who knows? something I might get into again. Im trying to work on my hormones right now....so many things to work on like most of us.
Gursie
That's really sad, Gursie. I had Lyme and I believe it caused my SJS and MCAS too.
There is always Rife treatment or herbs that can be used.
Quote from: trc1962 on July 16, 2016, 07:57:07 PM
Quietdynamics, where did you go to a sjogren's center? I am close to Seattle and Portland and wonder if there is a center there? I appreciate your (and all the suggestions) presented on this forum!
I only know of 4 dedicated Sjogrens Centers in the USA.
I am on the east coast the two I contacted were:
John Hopkins, MD, Julius Birnbaum, M.D http://www.hopkinssjogrens.org/about/our-doctors/julius-birnbaum-md/
Rheumatology and Sjogren's Syndrome Center, Philadelphia, Pa, Dr. Vivino http://www.med.upenn.edu/apps/faculty/index.php/g275/p38677
Here is a link for support groups by state.. I would network using this resource, their experience.
https://www.sjogrens.org/home/get-connected/support-groups/us-support-groups
The UCSF Sjögren's Syndrome Clinic is the "only clinic of its kind on the West Coast".
https://www.ucsfhealth.org/clinics/sjogrens_syndrome/
(This appears to be 9 hrs from you.. so I would get feedback from above link to hear others experiences. Expenses may be tax deductible under medical deductions which need to be over 10% of income.. so all those over the counter supplements.. get a script and save receipts, parking, travel mileage, etc and see at end of year. Add in cost of payments/contributions for medical insurance and see what you come up with.)
Thanks for all the wonderful information! I have learned more on this forum from actual people's experiences than anywhere else. My chiari has been unchanged since it was discovered in 2003 accidently. I saw a neuro - surgeon on June 1st to have him go over it and he said it was not an issue as it was very steady. However, it is worth asking again about I would think. The surgery as I have heard only gets positive notes in about 50% of the cases and they actually remove a portion of the skull - kind of gruesome! My rheumy mentioned it, but he has not actually read the neurosurgeons report yet. The gluten issue was tricky. My mom has been severly intolerant all her life and was diagnosed in 1991 at Stanford U by a piece of actual damaged villi but no antibodies. When I started through the difficulties in 2002/2003 they tested for antibodies and said no, I didn't have them. However, the truth was that I did feel so much less inflamed off of gluten that I stayed off it. My youngest son is negative as well but he definitely cut back his gluten intake and quit having gas and diarrhea all the time. My mom's issue is digestive, but my brother who also doesn't show antibodies either gets eczema and so the family has some type of issue with the protein and we are northern europeon. I went to a GF pizza joint 2 years ago and they mistakenly cut my pizza with a contaminated cutter and my feet and legs burned like fire within 12 - 24 hours and required a prednisone spurt - they call my issue a gluten sensitive vascular neuropathy but that is a guess I suppose. I have had a basic lyme's test but I believe it was negative. It sounds like that is hard to track down, but growing up in California in the redwoods I had more than my share of tick bites so anything is possible. I appreciate the information on the Sjogren's centers, the one in LA is closest and I will keep it in mind as we walk through this. My gut tells me this is simply a bad sjogren's flare with the dryness reoccurring and the neuropathy. We will see. Waiting for the MRI report in my email anytime. Thanks and hugs to all and wishes for the best Monday one can have!!
MRI's all came back squeaky clean except for some minor "age related" spinal bone shifting and nothing that would cause the nerve issues. The chiari is stable with no changes from 2003. My rheumy was so relieved and yet no answers yet. He said time for another skin biopsy to try to see the small fiber stuff and drop my prednisone a bit and see how I do. Feels like driving my car with no directions. I must remember that getting over stressed or tired for me like I did this Spring just can't happen and I have to listen to my body all the time and treat it the best I can. These forums are so helpful and have given me questions to pose for both the rheumy and the neuro in a couple of weeks and I am very thankful for that and for the good points and articles given to me as I continue on the quest to try and regain my strength. I will continue to read and post and kind of keep doing "research" on me and what it could be. Thanks to all.
Just a note about my experience with methotrexate. I've been on injectable for about 4 weeks, which is 4 treatments. I have experienced nothing negative to this point. On the positive side, I have experienced much better sleep habits and considerably better mood upon awakening. It's very noticeable and I'm very cautiously excited about it, hoping it's not just an unrelated phase I'm going thru.
You can order a free test kit from Igenex Lab in CA. Take it to your Dr and get her to sign the form. When you send in the blood, then you pay.
You can test for Lyme and/or any possible coinfections.
igenex.com
Being that my worst problem right now is neuropathy I am wondering if cellcept is the best choice of treatment or methotrexate? I have no idea but I would switch over if it was shown to work on neuropathy better. The first drug in 2003 was Imuran (generic form) and though it took 3-4 months to kick in, it really did a good job for many years. I see Imuran and methotrexate compared quite often and not sure where cellcept comes in. My dr. says rituxan hasn't been proven to do that well on neuropathy but I have read it does. Anybody get good results from it? I am not able to handle gabapentin very well, even 100mg makes my head feel terribly heavy. The dr. has suggested Lyrica and I am wondering if anyone has experience with this? I know that my legs hurt this afternoon from even just sitting but give it a few hours and it could shift and feel better. Still asking questions and sure appreciate the info I get here.
tcr1962 ..... I have had good results with Rituxan infusions. My PN sx have steadily improved since being on Rituxan. Burning in my feet, ankles, toes, lower legs has decreased 70% since being on Rituximab. Throbbing of my R forefoot & toes & the sensation of ice cold toes is reduced by 90%. Electric shock sensations are reduced by 90%. The sensation of my lower legs, ankles, & feet being encased in stiff tight elastic stockings is reduced by 80%. The sensation of cotton being wadded up around & between my toes is reduced by 80%. The sensation of vibration in my hands, arms, & legs has been reduced by 90%. Balance is improved. Positional numbness in my hands & fingers is gone. So, all PN symptoms improved.
I will post the link to a good article on the treatment of Sjogren's neuropathy in a separate post. I will also post the treatment section of the article, but the entire article is well worth the read and very informative.
Neurological Disorders in Primary Sjogren's Syndrome
7. Treatment of Neurological Manifestations in Sjogren's Syndrome
There is no consensus about the specific treatment of neurological involvement in pSS. Generally, corticosteroid therapy is initiated in patients with either CNS or PNS [15, 86]. CNS involvement is usually treated with high corticosteroid dose. In some cases, response to treatment is exceptional. For example, Caselli et al. [87] showed one patient with dementia who markedly improved after corticosteroid treatment. Concerning the treatment of acute and chronic myelopathies, de Seze et al. [88] showed the tolerance and clinical response of a combination regimen of steroids and monthly cyclophosphamide. Fourteen patients (6 with acute and 8 with chronic myelopathies) were evaluated. Tolerance was good, and nine patients improved clinically (including the total 6 patients with acute myelopathy), three patients remained stable, and the other two patients presented moderate progression. Although randomized studies are necessary, this treatment needs to be considered in patients with progressive disease.
Classically, peripheral neuropathy in patients with pSS responds poorly to treatment [11, 15, 86]. Some groups recommend only treating the symptoms according to the severity. In other patients, immunosuppressive therapy based on corticosteroids, cyclophosphamide, azathioprine, and even plasmapheresis has shown only mild success [89?91].
In the series reported by Terrier et al. [79], patients with necrotizing vasculitis have a better response to immunosuppressive treatment, mainly with cyclophosphamide (71% of patients with necrotizing vasculitis showed good response compared to 25% of patients with lymphocytic vasculitis). Griffin et al. reported a treatment based on corticosteroids and associated in some cases with azathioprine, intravenous cyclophosphamide or plasma exchanges [54]. Only one patient with a relapsing course responded to corticosteroid treatment. Mori et al. suggested that corticosteroids are suitable for multiple neuropathy and multiple cranial neuropathy [11].
IVIg has been also reported as a good therapeutic option in some painful sensory neuropathy cases [92] and in radiculoneuropathy. In a recently series of 19 pSS patients with peripheral neuropathy, intravenous immunoglobulin treatment was evaluated [93]. In this study, 8 patients (42%) showed a decrease of the disability Modified Rankin Scale, corresponding to a clinical improvement. Patients with sensorimotor or nonataxic sensory neuropathy were markedly improved compared to patients with ataxic neuropathy (2/9). The authors concluded that clinical benefits of IVIg treatment depend on the specific clinical subtype.
Caroyer et al. [94] showed improvement in sensory ganglioneuronopathy treated with infliximab. However, no controlled trials have shown efficacy of infliximab or others anti-TNFα in pSS-related neuropathy.
Rituximab, an anti-CD20 antibody, may be useful in systemic complications in pSS patients [95, 96] and in some cases of refractory neuropathy. Recently, Mekinian et al. [97] reported 17 patients with pSS and PNS involvement treated with rituximab. Neurological improvement was observed in 11/17 patients (65%) at three months. Best results were observed in patients with cryoglobulinemia or vasculitis-related PNS involvement (9/10 patients improved).
The benefits from treatment with oromucosal IFN-α in pSS have been reported by several groups [98?101]. Due to possible effects on sicca symptoms, Yamada et al. [102] reported three cases of pSS-associated neuropathy treated with oral IFN-α (two patients with sensory ataxic neuronopathy and one patient with axonal sensorimotor neuropathy with demyelinating features). All three patients responded well to IFN-α, improving the neurological symptoms. Sicca symptoms, antibodies titres, and focus score of salivary gland biopsy were also improved. However, the mechanisms whereby IFN-α induces neurological improvement in pSS are uncertain.
In conclusion, neurological manifestations are common in pSS and often precede the diagnosis. The accurate prevalence of these manifestations is difficult to assess, because the heterogeneity of the series. The pathogenic mechanisms responsible for most forms of neurological involvement in pSS remain unknown, but vascular, ischemic, and immunological mechanisms have been described. Controlled and population-based trials are necessary to better characterize the neurological manifestations in pSS and their therapeutic response.
PS: I forgot to post the link.
http://www.hindawi.com/journals/ad/2012/645967/
A couple more links:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002645/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4357592/
Thank you Jasper very much! Going to start through those articles tomorrow morning and read them well!! The more food for thought the better - and the better questions to pose to the rheumy and neuro as well!
Hi Trc,
Lyrica and gabapentin are almost the exact same drug, it is just that the Lyrica has something like three additional atoms stuck on one end of it. I am not surprised that your doctor is recommending Lyrica for neuropathy. I mentioned gabapentin because it is a less expensive generic, and in my body it is a bit stronger for the equivalent dose, but that is just me. Many people find one preferable to the other, and of course some people can't take either one - or else the neuropathy relief is less significant than the level of side effects for them.
Side effects feeling anything like "drunk" on gabapentin passes after the first weeks for most people, however, side effects feeling anything like "tired" doesn't necessarily pass so easily.
Immuno-suppressants would certainly help with your neuropathy if it is auto-immune in origin, however, they won't do anything if it is not, and may be due to pinched nerves in your spine, or diabetes, or something else. MRI results can't show you if nerves are pinched in your spine or neck vertebrae, because nerves don't show up on MRI's. Wishing you the best of luck with all of this.