Hi Sylvie,

I'm skimming through the posts and saw that you are struggling with depression.

I KNOW that the problem of depression is directly related to the inflammation caused by Immune Dysregulation.

Whenever a system or organ of the body is attacked and damaged, there is inflammation.

And depression, pain, fatigue are all directly caused by inflammation. The best way to 'check this' is to have a brief course of steroids (prednisone or methylprednisolone).

The steroids will stop the inflammation, if it exists, and the depression, pain and fatigue will stop as well.,

If the steroids don't stop the pain, fatigue and depression, then inflammation isn't the cause.

Read about inflammation and the conditions it creates, as well as the damage it does. All autoimmune conditions are inflammatory conditions.

My conditions are also inflammatory, but caused directly by my immune system attacking my body, probably with cytokines, not with autoantibody attacks on my body.

Different causes, similar results.

Take care.......we have to keep on....patience, persistence and acceptance are my mantra.

Hugs, ElaineD

Hi Elaine,

Thanks so much for your input!

Although it has basically been a life- long struggle, I've always plowed through and had a great affect....no one knew...I've also been very energetic my whole life...and had long symptom-free periods. Yet the depth and quality of this depression, which rolled in with all my dysautonomic symptoms last April, was (is) very different. It may have been set off by a reaction to antidepressants....for I had neurological symptoms for a long time....but then again, maybe I reacted the way I did because of an underlying AI disorder. ...or a Mast Cell Activation disorder. I'm continuing to have strange reactions to all meds. I'm only on 10 mg of nortripyline...for pain and depression. Helpful but not really therapeutic ...but I can't tolerate more.

In any event, I got to reading about depression, inflammation and cytokines! All news to me, and very convincing. So interesting to get your post in light of this.

As noted, my OI and POTS are severe, and I clearly have "sickness behavior, " which both my neuro (ex-neuro as of last week) and cardiologist attribute to the dysautonomia. But I hear you....interestingly, two (brilliant) buddies I've made on this site, who have AI disorders, also think I have one too. One suggested very specific tests.

My problem now is that although I feel I need further testing for AI disorders, I'm not sure how to proceed. I've got yet another dysautonomia screen set up for March 24...and an appointment with a new neuro on the 18th. Just for the heck of it, I have an appointment with yet another new neurologist in April (I'm shopping). Yet this ain't going to help with an AI dignosis.

I saw a rheumatologist twice in the past three months....two sets of tests...nada....but she finally suggested I go to the Sjogren's clinic in Baltimore. Perhaps I should? Do you have a suggestion? You have no idea how hard it is to find really good docs here in NYC....with a plethora of major medical centers.....

Is your PN an outgrowth of an autoimmune disorder? I'm so glad to hear you are doing much better.

Once again, thank you....I so appreciate your advice and input.

Sylvie

PS....I'm scared of steroids....although I appreciate your advice!

A short course of steroids can provide so much information. It really only takes a few days and you will know whether it will work or not.

I am NOT a proponent of steroid use long term, as I have permanent damage from their use. But using them to determine if your condition is inflammatory based is simple, informative and not harmful...because you are only on them for sometimes less than a week (other taper packs run about 10 days to 2 weeks). Now, if you find out that it IS helpful and your condition is, in fact, inflammatory based, then decisions have to be made as how to approach...and try to avoid the possible long term effects of steroids.

Looks like I have to reconnect with the rheumatologist. ...thanks for the suggestion!

New York and Ophtho info
 

Hi everyone, I just wanted to share some things I have learned after searching the planet Earth for doctors with INTEREST and KNOWLEDGE in dysautonomia. I try to read up on pubmed for abstracts about it, then I try to find those authors. I also have used the** for doctors who at least have enough interest to register themselves there, and from seeing a doctor on that list, I was referred to another one who actually is excellent.

Sylvia, I saw that the doctors at Columbia's Peripheral Neuropathy Center write a lot of articles on autonomic neuropathy, and there is even a paper on better diagnosing patients who were referred there for idiopathic autonomic neuropathy. I don't see any doctors on the list from NYU, but Dr. Kaufmann at NYU looks like the only neurologist on staff in the autonomic clinic, and his papers are mostly on non-autoimmune types of dysautonomia. So, I don't know if you have been to or considered Columbia yet.

Mat, I know a little bit about the eye. It sounds like you might want to ask your next ophthalmologist which part of the eye he sees nerve damage in. Ophtho's will usually photograph abnormal appearing optic nerves, and do visual field tests for patients with visual symptoms like you describe. Low blood pressure problems could cause low tension glaucoma (which can be harder to diagnose), and that would be something that the doctor would definitely want to treat...but I don't think it is even talked about much in the ophthalmology community because it may be very uncommon. Other signs of nerve damage in the eye are pupil disorders...pupils are usually smaller and are slower to dilate and constrict in response to light. Dry eyes go along with the autonomic neuropathy because the signal to the tear glands isn't normal. Also, oligoclonal bands usually implies an autoimmune process in the central nervous system, did you have a spinal tap? If you are positive for that, they should be treating you, not ignoring it because they don't know what it means. Even if you see an MS specialist, they would know about oligoclonal bands.

One thing I personally found helpful for my bp problems was to raise the head of my bed up by 7 inches, on risers, which are inexpensive and easy to find on internet shopping sites. By sleeping at a tilt, with the head up, the veins in your legs don't relax as much, so you have better tone in the morning when you start your day...anyway, it is recommended on a lot of sites for autonomic neuropathy. For me, it greatly reduced the severe headaches I was always getting from low blood pressure. Compression stockings on the legs are also recommended. I take florinef and midodrine for low bp, mestinon (helps bowels contract), bethanechol (helps reduce urinary hesitancy and retention), propranolol (lowers rapid heart rate), as well as immunosuppressants.

Most people on this forum sound young and like these symptoms are acquired, so I recommend the full panel of dysautononic testing for all the antibodies. If I was only tested for the AchR antibody, my diagnosis would have been missed again, bc I have the GAD65 antibodies. I also read that it usually takes patients like us several years to get a proper diagnosis...that means we spend several years going from doctor to doctor until we find one who knows what to do. Don't take no for an answer, and just because they tell you all your tests are normal, it only means they haven't done the right test yet. Believe me, I was told there was nothing wrong with me but anxiety for years, while I lied on their exam table with my heart going at 130. Even Mayo Clinic diagnosed me with POTS, and followed that up by telling me it was due to anxiety...and offered no treatment, so my trek continued. I wish I had gone to the Cleveland Clinic or Johns Hopkins early on, I have read excellent things about their neuro and rheumatology departments.

Most people on this forum sound young and like these symptoms are acquired, so I recommend the full panel of dysautononic testing for all the antibodies. If I was only tested for the AchR antibody, my diagnosis would have been missed again, bc I have the GAD65 antibodies.
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JJ33...can you tell me what the GAD65 antibody test is? I also just started a thread asking about the Cleveland Clinic and welcome your advice about it and alternatives. (You seem to also know a lot @ NYC...I'm eager to hear about your testing and DX experiences). Thanks!

The pupil size is controlled by the sympathetic and parasympathetic branches of the autonomic systems.

The pupil light response is controlled mainly by the parasympathetic system. It constricts the pupil in response to light and reduce this constriction in dark. Damage in this pathway reduce the pupil constrictions, so problems in the light response goes together with larger and not smaller pupils. It is called Adie tonic pupil, or Holmes syndrome and it is common in Sjogren Syndrome.
Parasympathetic damage can also cause reduced tearing and dry eyes, or it can affect the accommodation reflex which cause pupils constriction when focusing on a near object.

Damage to the sympathetic pathway can cause Horner Syndrome - small pupils, falling of the upper eyelid, and reduced sweating around the eye.
It can also cause a slower pupils dilation in dark.