Hubbie, I mean. We had breakfast in the nice little restaurant again this morning and it will probably be all I'll eat today. Thanks to all of you for your good wishes.

Liza Jane, I had a sneaking suspicion last night that there might be chocolate coming. Just know you too well I think.

I read your last post and it was more knowledge than I had before. I don't believe I will be seeing Dr. Dyck again. He did order some more tests when I saw him last with Dr. Mauermann this week. I just looked at my schedule and I am to see her again but it doesn't mention him. Maybe he will be curious to see what the tests show. She seems to be very close to him and is comfortable questioning things he is discussing with me. I also get the feeling that he is pretty confident with her ability to understand this situation.

I just searched and put in order all the schedules. Everytime you have something new ordered they give you a new "dance card" or schedule. It is a wonder I haven't mixed the things up. I now have 7 fat schedules. They look virtually the same except for the dates and print times in the bottom right head corner. You need to have a pocket on your bag or file to keep the current one and put the old one completely out of reach to keep from getting them confused. When you are moving so fast from one appt. to another with the schedule essentially changing everytime you have something done or see a doctor, it is easy to confuse the schedule. I carried a tote bag, with a zippered outside pocket for wallet, (personals) and a center zip pocket for medical record copies. I poked the old schedule in the center pocket with the records and kept the new one outside that pocket.

Got side tracked..back to the doctor visits. Liza Jane, I saw Dr. Kenneth Warrington in the Rheumatology Dept. He said that he wasn't comfortable prescribing anything more than the Humira or the methotrexate at this point. He did say that further tests that were still to come may change his mind. I saw him early in my visit. My husband and I are making a checklist of the questions we have to ask Dr. Mauermann. I'm not scheduled to see the Rheumatologist again I need to know if he will see the test results and perhaps need to see me again.

Gotta get up..will read the post you sent again later Liza Jane. A lot to soak up there.

Billye

Billye, this is a task for more Len, than you, I'm thinking. Because I'd like to be sure someone makes the doctors you are seeing, neuro or rheum, address SPECIFICALLY the hope of IVIG in your case. I'm putting a bunch of abstracts here which are applicable to you, and I'm going to send them to you in an email. Hopefully, Len can print them out. If they don't discuss the meaning of this research, I'm going to be incredibly disappointed. Can you find out if they are considering it? Can you talk with Dr Dyck? I mean, you're there, and these guys are pretty accessible, can you phone his office and say you'd like to check out with him, or at least talk with him for a few minutes.

There's a lot on IVIG and vasculitis neuropathy, and Sjogren's, specifically.



1: J Neurol Neurosurg Psychiatry. 2006 Aug;77(8):967-9. Related Articles, Links


Intravenous immunoglobulin treatment in painful sensory neuropathy without sensory ataxia associated with Sjogren's syndrome.
Kizawa M, Mori K, Iijima M, Koike H, Hattori N, Sobue G.

Department of Neurology, Nagoya University Graduate School of Medicine, 65 Tsurumai-cho Showa-ku, Nagoya 466-8550, Japan.

Patients having neuropathy associated with Sjogren's syndrome may present with pain and superficial sensory involvement in the absence of sensory ataxia. Treatment for this form of associated neuropathy has not been established. The case of a patient with painful sensory neuropathy associated with Sjogren's syndrome, whose symptoms, particularly pain, responded well to intravenous immunoglobulin both at onset and in a relapse, is reported. Other patients with painful sensory neuropathy associated with Sjogren's syndrome may also be candidates for intravenous Ig treatment.

Publication Types:
Case Reports

PMID: 16844955 [PubMed - indexed for MEDLINE]

--------------------------------------------------------------------------------

2: Ann N Y Acad Sci. 2005 Jun;1051:779-86. Related Articles, Links


Response of vasculitic peripheral neuropathy to intravenous immunoglobulin.

Levy Y, Uziel Y, Zandman G, Rotman P, Amital H, Sherer Y, Langevitz P, Goldman B, Shoenfeld Y.

Department of Medicine E, Meir Medical Center, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel.

Peripheral neuropathy is a prominent feature of the systemic and secondary vasculitides. Usually, it responds to corticosteroids therapy, but in certain cases it may resist corticosteroid or immunosuppressive treatment, or both. The objective of this study is to present case reports of patients who exhibited various inflammatory diseases, accompanied with vasculitic peripheral neuropathies, for which intravenous immunoglobulin (IVIg) was used for treatment. The study included 10 patients with the following: Sjogren's syndrome (1), systemic lupus erythematosus (2), vaccination-induced vasculitis (1), Churg-Strauss vasculitis (1), mixed cryoglobulinemia (2), polyarteritis nodosa (1), sarcoidosis (1), and scleroderma (1). All developed vasculitic peripheral neuropathy and were treated with 1-13 cycles of high-dose IVIg (2 g/kg body weight). The patients were followed up for 1-5 years after this treatment. Results showed that in all but two patients (mixed cryoglobulinemia associated with hepatitis C and sarcoidosis), neuropathy improved or completely resolved after IVIg treatment. In conclusion, IVIg may be beneficial in cases of resistant vasculitic peripheral neuropathy. IVIg should probably be considered as a sole or adjuvant treatment in patients for whom conventional treatment is contraindicated, or for patients in whom conventional treatment has failed.

Publication Types:
Case Reports

PMID: 16127015 [PubMed - indexed for MEDLINE]

--------------------------------------------------------------------------------

3: Brain. 2005 Nov;128(Pt 11):2518-34. Epub 2005 Jul 27. Related Articles, Links


Comment in:
Brain. 2005 Nov;128(Pt 11):2480-2.

The wide spectrum of clinical manifestations in Sjogren's syndrome-associated neuropathy.Mori K, Iijima M, Koike H, Hattori N, Tanaka F, Watanabe H, Katsuno M, Fujita A, Aiba I, Ogata A, Saito T, Asakura K, Yoshida M, Hirayama M, Sobue G.

Department of Neurology, Nagoya University Graduate School of Medicine, Nagoya, Japan.

We assessed the clinicopathological features of 92 patients with primary Sjogren's syndrome-associated neuropathy (76 women, 16 men, 54.7 years, age at onset). The majority of patients (93%) were diagnosed with Sjogren's syndrome after neuropathic symptoms appeared. We classified these patients into seven forms of neuropathy: sensory ataxic neuropathy (n = 36), painful sensory neuropathy without sensory ataxia (n = 18), multiple mononeuropathy (n = 11), multiple cranial neuropathy (n = 5), trigeminal neuropathy (n = 15), autonomic neuropathy (n = 3) and radiculoneuropathy (n = 4), based on the predominant neuropathic symptoms. Acute or subacute onset was seen more frequently in multiple mononeuropathy and multiple cranial neuropathy, whereas chronic progression was predominant in other forms of neuropathy. Sensory symptoms without substantial motor involvement were seen predominantly in sensory ataxic, painful sensory, trigeminal and autonomic neuropathy, although the affected sensory modalities and distribution pattern varied. In contrast, motor weakness and muscle atrophy were observed in multiple mononeuropathy, multiple cranial neuropathy and radiculoneuropathy. Autonomic symptoms were often seen in all forms of neuropathy. Abnormal pupils and orthostatic hypotension were particularly frequent in sensory ataxic, painful, trigeminal and autonomic neuropathy. Unelicited somatosensory evoked potentials and spinal cord posterior column abnormalities in MRI were observed in sensory ataxic, painful and autonomic neuropathy. Sural nerve biopsy specimens (n = 55) revealed variable degrees of axon loss. Predominantly large fibre loss was observed in sensory ataxic neuropathy, whereas predominantly small fibre loss occurred in painful sensory neuropathy. Angiitis and perivascular cell invasion were seen most frequently in multiple mononeuropathy, followed by sensory ataxic neuropathy. The autopsy findings of one patient with sensory ataxic neuropathy showed severe large sensory neuron loss paralleling to dorsal root and posterior column involvement of the spinal cord, and severe sympathetic neuron loss. Degrees of neuron loss in the dorsal and sympathetic ganglion corresponded to segmental distribution of sensory and sweating impairment. Multifocal T-cell invasion was seen in the dorsal root and sympathetic ganglion, perineurial space and vessel walls in the nerve trunks. Differential therapeutic responses for corticosteroids and IVIg were seen among the neuropathic forms. These clinicopathological observations suggest that sensory ataxic, painful and perhaps trigeminal neuropathy are related to ganglioneuronopathic process, whereas multiple mononeuropathy and multiple cranial neuropathy would be more closely associated with vasculitic process.

Publication Types:
Multicenter Study

PMID: 16049042 [PubMed - indexed for MEDLINE]

--------------------------------------------------------------------------------

4: No To Shinkei. 2004 May;56(5):421-4. Related Articles, Links


[High-dose intravenous immunoglobulin in the treatment of sensory ataxic neuropathy with Sjogren's syndrome: a case report]

[Article in Japanese]

Taguchi Y, Takashima S, Takata M, Dougu N, Asaoka E, Inoue H.

The Second Department of Internal Medicine, Toyama Medical & Pharmaceutical University, 2630 Sugitani, Toyama 930-0194, Japan.

We report herein a case of sensory ataxic neuropathy with Sjogren's syndrome (SS-SAN) who became dramatically improved in response to high-dose intravenous immunoglobulin treatment (IVIg). An 81-year-old man began to feel numbness in his hands and feet in August 2002. Because he became unsteady and could not do skillfull movement, he was admitted to our hospital in May 2003. On neurological examination, all tendon reflexes were absent. His vibratory and position senses were severely impaired to knees and elbows. Touch, temperature, and pinprick sensations were mildly disturbed in a glove-stocking distribution. Coordination was clumsy in all limbs because of sensory loss. He had gait ataxia with Romberg sign. Nerve conduction study revealed that sensory nerve action potentials were absent. He was diagnosed as having SS-SAN because Schirmer test, Saxon test and both SS-A and SS-B antibodies were positive. Thereafter, Mg, 400 mg/kg daily for 5 days, was administered. His sensory impairment began to improve 2 days after Mg. Subsequently, he could walk steadily without ataxia. It is considered that IVIg may be an effective treatment for SS-SAN.

Publication Types:
Case Reports

PMID: 15279200 [PubMed - indexed for MEDLINE]

--------------------------------------------------------------------------------

5: Ann Rheum Dis. 2003 Dec;62(12):1221-3. Related Articles, Links


Intravenous immunoglobulins in peripheral neuropathy associated with vasculitis.

Levy Y, Uziel Y, Zandman GG, Amital H, Sherer Y, Langevitz P, Goldman B, Shoenfeld Y.

Department of Medicine B and the Centre for Autoimmune Diseases, Sheba Medical Centre Tel-Hashomer, Sackler Faculty of Medicine, Tel-Aviv University, Israel.

BACKGROUND: Peripheral neuropathy is a prominent feature of the systemic and secondary vasculitides. Usually, it is responsive to corticosteroids, but in certain cases it may be resistant to corticosteroid or immunosuppressive treatment, or both. OBJECTIVE: To present patients who exhibited various inflammatory diseases accompanied with vasculitic peripheral neuropathies for which intravenous immunoglobulin (IVIg) was used for treatment. METHODS: Six patients with Sjogren's syndrome, systemic lupus erythematosus (SLE), vaccination induced vasculitis, Churg-Strauss vasculitis, mixed cryoglobulinaemia associated with hepatitis C infection, or sarcoidosis were included. All developed vasculitic peripheral neuropathy, and were treated with high dose IVIg (2 g/kg body weight). The patients were followed up for 1-5 years after this treatment. RESULTS: In four patients (Sjogren's syndrome, Churg-Strauss vasculitis, SLE, and vaccination induced vasculitis) the neuropathy resolved after IVIg treatment. CONCLUSION: IVIg may be beneficial in cases of resistant vasculitic peripheral neuropathy. IVIg should probably be considered as a sole or adjuvant treatment for patients with contraindications to conventional treatment, or alternatively, for patients in whom conventional treatment has failed.

Publication Types:
Case Reports

PMID: 14644864 [PubMed - indexed for MEDLINE]

--------------------------------------------------------------------------------

6: Muscle Nerve. 2003 Sep;28(3):273-92. Related Articles, Links


Immunotherapy of idiopathic inflammatory neuropathies.

Donofrio PD.

Department of Neurology, Wake Forest University School of Medicine, Medical Center Boulevard, Winston-Salem, North Carolina 27157-1078, USA. donofrio@wfubmc.edu

Evaluation of peripheral neuropathy is a common reason for referral to a neurologist. Recent advances in immunology have identified an inflammatory component in many neuropathies and have led to treatment trials using agents that attenuate this response. This article reviews the clinical presentation and treatment of the most common subacute inflammatory neuropathies, Guillain-Barre syndrome (GBS) and Fisher syndrome, and describes the lack of response to corticosteroids and the efficacy of treatment with plasma exchange and intravenous immunoglobulin (IVIG). Chronic inflammatory demyelinating polyneuropathy, although sharing some clinical, electrodiagnostic, and pathologic similarities to GBS, improves after treatment with plasma exchange and IVIG and numerous immunomodulatory agents. Controlled trials in multifocal motor neuropathy have shown benefit after treatment with IVIG and cyclophosphamide. Also discussed is the treatment of less common inflammatory neuropathies whose pathophysiology involves monoclonal proteins or antibodies directed against myelin-associated glycoprotein or sulfatide. Little treatment data exist to direct the clinician to proper management of rare inflammatory neuropathies resulting from osteosclerotic myeloma; POEMS syndrome; vasculitis; Sjogren's syndrome; and neoplasia (paraneoplastic neuropathy).

Publication Types:
Review

PMID: 12929187 [PubMed - indexed for MEDLINE]

--------------------------------------------------------------------------------

God Bless you Liza Jane.

you are so thoughtful and have gone to such lengths to help everybody out.

Here's to you!!!

I am so proud of you. This must be such an ordeal, but you are hanging in there like a champ.

The support of the people on this forum is fantastic. I would not expect to see this kind of support and interest in friends who are personally close to one in the outside world. Thank goodness for the Internet...

I was wondering if the local Neurologist is following your experiences, or have you been in contact?

Much love,
Cathie

Sitting in the waiting room for another appt. People all around me but too close for comfort. Just a note for Liza Jane to thank her for all the research and will read it later at the hotel. Too much doing right now.

Billye

Cool that you can use your laptop in the waiting room! Like a college kid!

Now I purposely referenced LEN in the note, because I figure you are just too exhausted at this point to have to deal with this. But I'm hoping he is by your side advocating on the treatment aspects which all of us here are hoping for so intensely.

Chocolates: Really, this started with Melody bugging me that I needed some Dove chocolates when things were going rough and I was about to have surgery. I didn't find them at that point, only the ice cream, but now, all my body therapists have bowls of small pieces of Dove chocolate in their waiting rooms. Seems that some massage magazine, or practice management magazine rcommends jars of chocolates to enhance patient return visits! I've gotten addicted. A little shop near where I work has tiny, really tiny dark chocolates that I've been buying nearly daily since I discovered Dove. They're Green and Black, 70% Dark Chocolate, with NO SUGAR. They are just so incredibly intense. I determined that Billye would need these at Mayo, so went on a hunt online. Damn I could not find them, but did find a chocolatiere promising a one day delivery. I fell for it. Not the right chocolate, but definitely would get to Mayo on time. It was a con. The promise was one-day shipping. Ten day delivery. So maybe, Billye, you'll havea them for the road trip home.

Originally, I thought you guys were all talking about Dove Ice Cream bars... Duh!!!

I am going to have to try these.

Cathie

Sitting in one of the waiting rooms again. I can't even begin to tell you how exhausted I am. And so homesick. We are supposed to be thru today. We still have the neuro and the GI doc to see today. There is also the possibility I have another day to go on the last GI test. The radioactive capsule is making it's way down the dry digestive tract slowly. I don't know how they expect the thing to move down without any moisture. Have not been allowed to drink except at meal times and I am soo dry. And if I have to extend the test another day, the doctors will change their appointments too. The neuro needs the GI test results also.

I've read all the postings and the research info. My husband doesn't understand the least thing about any of this.

I'm sitting next to a man and woman in the waiting area who have just turned on a portable radio and it is driving me nuts!!! People are so inconsiderate of others sometimes.

This is a long day of waiting so I'll try to add to this when I can. I have questions.


Liza Jane, my email in the hotel is less than adequate. Paid for that service too. But I did send you a long email about 7:00-8:00'ish last night.

More later.

Billye

Couple of questions:

1. What improvements from IVIG have any of you experienced?

2. Are they measurable in a quantitative way? Or just a "I feel better"?

Billye

http://www.dovechocolate.com/SugarFree.aspx

they look real good!!!

mel