MS or sjogrens...waiting for MRI again

[trc1962]

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!

[Carolina]

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

[SJSman]

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. 

[gurs]

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

[jazzlover]

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.

[quietdynamics]

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.)

[trc1962]

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!!

[trc1962]

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.

[sixty]

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.

[jazzlover]

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

[trc1962]

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.

[Jasper]

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.

[Jasper]

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/

[Jasper]

A couple more links:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002645/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4357592/

[trc1962]

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!