en bloc,
thanks. Yes, I did read up on this doctor yesterday. Would be good to see a doctor with those combined specialties !
I just have to wonder how I can get it qualified for coverage under Medicare. When I went to Mayo, I was under a different insurance, and I was lucky to have a good caseworker in the plan to get it 100 % covered. I was there for 3 days.

In general, from what I understand, Sjoegren;s can have neuropathy burning pain that is different from the typical length dependent "stocking distribution" kind of symptom.
Therefor, I thought, from what I am reading in this thread, aMRN could see dorsal root ganglia problem which verify the kind of neuropathy symptoms that is not length dependent, but proximal ??
I have burning in my feet.legs,hands,arms, face and scalp, mouth and gums, as well as a constant vibrating feeling all over. My neurologist says that is from the small fibers. But it is just left like that, no further investigations.

Has any one here with Sjoegrens experienced chest tightness?
Synnove

You should have NO problem going to Hopkins with Medicare. There is NO referral needed under Medicare. It is my primary insurance and I live in VA, so I travel to Baltimore to see him (about 3 hours each way). Medicare has always covered my care at Hopkins (most of my specialists are there). The Sjogren's Center can assist you with information about insurance coverage.

One of the many aspects of autonomic neuropathy is cardiac vasospasms. Vasospasms can cause symptoms very similar to heart attack...because the arteries can collapse briefly during the spasms and therefore reduce blood flow for short periods. This would include feelings of pressure in the center of the chest, some tightness, left arm, neck, or jaw pain, and even back pain. Everyone is different in how these symptoms present.

Any and all chest discomfort should be evaluated by a cardiologist or someone in the ER or your PCP. Sjogren's (and other autoimmune diseases) can cause inflammation in the arteries and other blood vessels and this inflammation increases the risk of plaque building up or CAD (coronary artery disease). Please get this evaluated.

en bloc,
OK, thanks for the advice re. insurance matters.

Re. cardiac issues, yes I do have CAD. I had a cardiac cath. done about 2 years ago, it showed " non obstructive CAD" ( can not remember quite which coronary artery it was), but nevertheless, the interventional cardiologist that did the cath. only did the left side. So my other cardiologist, did a cardiac dopler because he was suspecting pulmonary hypertension. It showed " left ventricle systolic dysfunction". Doc says, it is not uncommon. I have 2 or 3 different valve conditions.

My cardiologist gave me Norvasc, to act as a antispasmodic effect.

I have vascular spasm, that I believe is causing my ice pick headaches.
Sometimes the large vessels in my forearms spasm so they feels like a hard rope, and it hurts against my (I believe) ulnar nerve.
All this, in addition to vasculitis and aneurysm.

Another sign/symptom I have is Levido Reticularis, also spasm.

So, thanks for the input re. cardiac issues in autoimmune conditions, being it Sjoegren's or others, ( I do not really care any more, they all seems to be inter related) I just know that I have " something"
I will try to have some team work between my rheumatologist and cardiologist
Think it is time to have some reevaluation.
I will try to get to Hopkins, if needed
Thanks

I get spasms from the autonomic neuropathy. The only thing that burns for me now is my mouth. I don't feel much in my feet. I won't get into everything that hurts because that would fill a page. I have cardiac arrhythmias and they are different so they can't be treated, because it isn't the heart, it's the wiring of my body. I am done with the IVIG, because I am 62 and my kidneys are getting too old for that protein load, I started getting distal renal tubular acidosis and I didn't want to wreck my kidneys. I cant take the typical drugs for spasms because they lower blood pressure, which for me, doesn't work real well. :/ Sigh.

Cyclelops,

I am interested in getting a MRI/MRN. I wonder if the university medical school system where I have been seeing a neurologist that diagnosed me and being fallowed by a rheumatologist, have such procedure to offer.----I will find out.
I feel that it is important to get this ganglionopathy diagnosed or ruled out. That is how one can benefit from correct treatment plans.

Just interesting to reading your posts on AAG.
I too, have had MS like symptoms big time. Have brain lesions that "is in a pattern suggestive of MS" But I have had repeat and repeat, had LP, negative. I think they have ruled it out. I just had my last MRI, no change.

Question: Have you had any Autoimmune Aotonomic symptoms like this:
waking up at night with a rush like symptom that moves out over different body parts, accompanied by a sensation of warmth? ( !! this is not hot flashes!!) My neuros have not figured it out. Had EEG etc. They thought it was a simple partial seizure, but negative.
Now I just ignore it, though it is scary, and have come to think that it is a symptom related to my neuropathy. Could it be, do you think?

I agree with you, when it comes to the Sensory part of our nervous system, one can often be ignored because it is more difficult to diagnose

thanks for reading, and stay well.

Just reiterating that the spasms are likely autonomic in nature. I alos have the livedo reticularis and yes, that is yet another autonomic dysfunction from spasms in the medium sized blood vessels.

Nitro works well for me, but I must check my BP before using it and lay down as well...due to the orthostatic hypotension.

More questions
 

To Billylyne5
Thanks for starting this informative thread - I don't have much spare time (or brain energy) to search for answers to medical 'mysteries' so it's great when I come across a thread with lots of info. Hope you're making progress with your quest for a diagnosis. Hang in there.
To all who have posted thanks for the info, especially about AAG - even if some of it is beyond my level of medical-speak comprehension it is very useful and I will research further.

Specifically to Synnove re the "tightness in the chest" this sounds similar to a symptom (amongst many) I have been experiencing for a number of years. Some questions: Is it in the upper region of the chest - sort of lower oesophageal area? Does it come and go with no apparent reason or cause? Does the duration vary from hours to sometimes days or even weeks? Does the tightness at times feel like a burning choking that sometimes leaves you short of breath if you over exert yourself? Sorry for all the questions but it's a difficult symptom to describe. And also sorry for not being able to definitively attach the symptom to a specific diagnosis.
In my case I suspect that I may also have Sjogrens (as a secondary auto-immune condition to primary Addison's Disease (adrenal failure) - diagnosed 5 years ago this week). My father also had Sjogrens (secondary to RA) so I am familiar with some of the presenting symptoms. Unfortunately I'm in a country with a Public Health system so getting to see a specialist is difficult and if a test shows up negative - that's it! they stop looking! Have to keep pushing and looking for answers - won't go into all my other symptoms here but also suspecting some type of Peripheral Neuropathy. Had a confirmed bout of Trigeminal Neuralgia last year.
Also in regard to your other symptom "waking up at night with a rush like symptom that moves out over different body parts, accompanied by a sensation of warmth?" This sounds like it may be something called L'Hermite's Sign. It's a nerve spasm (bit like an electric shock) - often originating in the spine - it can be strong enough to wake someone from a deep sleep but goes quickly and doesn't normally leave any trace. If there are other symptoms with it eg weakness, or stroke signs definitely get it checked.
Hope this is of use to you and others.
at the same time

bluesfan,

I am sorry to hear you have Adison's. I hope you get referral to both neurology and rheumatology doctors to check out possible neuropathy and underlying causes, and to explore your suspicions of a Sjoegren's diagnosis.
I understand your dilemma re. healthcare systems, I lived in 2 countries with socialized medicine.

Regarding your question on the chest symptoms: My symptoms is described as a tightness,squeezing and heavy feeling. Symptoms are both anterior (front) and posterior (back). It is right across the chest, usually at mid point and up in upper chest area, and leaves me with feeling of heaviness in chest and tightness across upper back. Not really short of breath, but somehow having the feeling to expand the chest. Sometimes it comes from no apparent reason, other times not. Symptoms come even without physical strain. Sometimes it comes in the afternoon when the sensory neuropathy symptoms get worse. It last for a few hours. I get it 3 -4 times out of 7 days.
There is no burning like you described. ( I have other type of burning at same time, but that is something else.)
The upper chest you mentioned as burning could be acid reflux. I know doctors seem to often brush a lot of symptoms away saying " oh, that is just acid reflux"
I would recommend you also get a GI, gastrointestinal specialist.

BUT, acid reflux can play a part in the big "symphony" of neuropathy. If you have SFN, most likely there is also autonomic neuropathy involved. This can again cause all sorts of GI problems like extreme acid reflux, gastroperesis.
This also happened to me.
I needed a special GI to do a test called Mannometry ( could be mis spelled)


Regarding the suspicion of Sjoegren"s that both you and I have described in our posts: I do not know, it is my thinking that perhaps the chest tightness can also have something to do with lack of secretion for lubrication in lungs, perhaps caused by Sjoegren"s???
I know, that for me, sometimes a hot steamy shower helpes.
I also have a cardiac issue that may be playing a role in this. As en bloc described. I will discuss my autoimmune disorder with the cardiologist soon.

en bloc has desribed in his posts how many systems can get attacked from autoimmune disorders, Sjoegre"s being one of them, like the cardiovascular system, respiratory system, nervous system and others, for example the cutaneus system (skin)

You mentioned you thought you had peripheral neuropathy. I have over the time coping with my different symptoms and diagnosis that with Sjoegren"s one of the typical symptoms is severe neuropathy.
--Do you have pins and needles, burning sensation, numbness typical for SFN?
-- I also have the tingling up and down a nerve path and I know this is not SFN but from a long nerve. I have SFN in addition.

Billylyne5,
let us know when you have had your appointment with the rheumatologist!
Thanks for reading

Thanks Synnove for clarifying your chest tightness symptoms. Sounds like we're similar but slightly different - autoimmune conditions can present such a confusing overlap of symptoms differently in each individual. Hope your cardiac problems are manageable. I agree with your theory of Sjogren's possibly causing a lack of lubrication in the lungs (and possibly oesophageous?) Fits with the whole dryness symptoms typically presented with sjogren's. I was tested for sjogren's but the blood tests came back negative (which I understand is not uncommon), schirmer's test was positive for dry eyes. I have burning painful feet and numbness in the ball and toes of both feet. I also have numbness and weakness in my left hand which is slowly increasing. Pins and needles, joint pain and fatigue are constant (I also have some osteoarthritis).
Re the reflux - I was misdiagnosed with acid reflux (and treated with a Omaprezole (I think that was it) about 6 mths prior to my original Addison's diagnosis. I wasn't diagnosed until I had deteriorated enough to go into crisis. The reflux diagnosis was then dismissed and the symptoms were attributed to the Addisons. The medication never gave me any relief anyway and was stopped. I'll discuss it again with my GP when I see her next.
I had an emergency appendectomy last Oct. which caused another Addison's crisis including some neuro symptoms - as a result of this I requested to see a neurologist but so far have heard nothing re an appt.
It's good to read everyone's posts and get info to help me prepare questions for when I hopefully get to see someone. Thanks
Billylyne5 - all the best for your appt. on Jan 23. Hope you make some progress.

I doubt that an MRI will necessarily rule out or rule in AAG. If your epidermal nerve fiber density test is positive for neuropathy AND you have abnormal autonomic testing, and you are showing at least a positive ANA, it's highly likely you could have AAG. Once you are diagnosed with it, to be honest treatment right now is predominantly symptomatic. It's possible IVIG will help, it is possible Rituxan or plasmapheresis with Rituxan will help, but honestly for me, the only thing that helped was a substantial dose of prednisone and I had to wean off that back into the abyss because you can't stay on that high of a dose (more than 20mg) for life.
As far as the chest pain, I have the same squeezing band sensation that people with MS get. It's like wearing a way too tight bra. I also get esophageal spasms and that is a pretty acute hard chest pain that remits. Your pain sounds more cardiac to me and it should be addressed and soon.

As far as the odd sensations, I have everything in the book from oscillating sensations in my spine, 'hot flashes', cold chills (don't adapt to changing weather very easily) Raynauds like pain in my face and hands. My legs feel wooden and very heavy. All of the fascial tissue in my body is painful and feels bunched up. Constipation is a constant issue, as it post prandial discomfort.

To add insult to injury, I don't look that sick.

Be real careful with all medications.