YES AUTOIMMUNE OR NO AUNTOIMMUNE?

[kelownagirl59]

Since 2001 I have gone through a number of health problems. Started with a lot of body pain, stomach pain, migraines, slow motility issues in GI track, etc., etc. I had to have a Complete Hysterectomy re: Endometriosis, I crushed my left ankle had to have plates and pins installed. I have Hypothyroidism, Neuropathy, Gastro paresis,  Nodular Prurigo, Purpura. My doctors at UCLA agreed I had Scleroderma but my doctors here in WA are calling all of this UMCTD, meaning Undifferentiated Mixed Connective Tissue Disease. Can anyone please help me and come to some kind of diagnosis?

[LivingInHope]

You might ask your GI doctor- they may or may not be familiar with dysautonomia.  You might want to come with some documentation not only of your symptoms, but how these things can be symptoms of dysautonomia.  See Private message.

[kelownagirl59]

     Hello again, thank you for responding to my post. I have GI issues major. Migraines, lack of sweating as well. Do you think I should ask my GI doctor about this issue on Friday?

[LivingInHope]

Dysautonomia is a dysfunction of the autonomic nervous system.

This dysfunction can display itself in a variety of was, and symptoms can be many and varied,.  Some symptoms may include orthostatic tachycardia, inappropriate sinus tachycardia, neurcardiogenic fainting, gastrointestinal problems, migraines, lack of sweating, migraine headaches, etc..

[kelownagirl59]

     I don't know what Dysautonomia is.

[LivingInHope]

I know sometimes my stomach seems to flare like heating pad in it despite measures I take, including prescription medication.  It once was hinted at to me that it might be a part of my dysautonomia.

[kelownagirl59]

     Yes the no sugar diet does help some, but I find when I am in a bad flare nothing helps.

[LivingInHope]

I hope you will find a competent endocrinologist to go to!  Do you find the 'no sugar' diet reduces your bloating, nausea, and reflux symptoms?

[kelownagirl59]

    Hello again, yes I have been tested for autoimmune disorders. I have never been to an Endocrinologist. I have been tested for diabetes and I am borderline. My Gastronologist put me on no sugar because I have so many gut issues. I have a lot of bloating, nausea and reflux.

[LivingInHope]

So, have you had any genetic and autoimmune type testing?  

Regarding endocrine hormones, you mentioned hypothyroidism.  The thyroid hormones and the pituitary hormone known as TSH (thyroid stimulating hormone) are just some of a number of endocrine hormones.  I am kind of surprised an endocrinologist never did a complete work-up after the hypothyroidism was discovered.  You might ask your endocrinologist if they would consider doing a thorough endocrine work-up.

Insulin is another endocrine hormone, which is supposed to be produced by the pancreas.  When a person has diabetes, where the insulin is not working/working the way it should, neuropathy in the feet is a symptom that can develop out of diabetes.  The test that is commonly used today to check for diabetes is HgA1c also known as HbA1c- this gives a longer window of looking at how blood sugar is in the body compared to a brief snap shot in time approach, such as a fasting blood sugar.  Diabetes is only one of the known causes of peripheral neuropathy... there are others that should have been tested for by that neurologist in addition to testing for this.  I hope you will pursue getting tested with a thorough neurologist for the known causes of peripheral neuropathy so they can either rule them out or locate the cause of yours in your feet.

You mention you try to stick to a no sugar diet- what led to this sort of diet for you?

I'm thankful your migraines are at bay right now and that you have a GI appointment!

[kelownagirl59]

     I forgot to mention I try to stick to a no sugar diet.

[kelownagirl59]

     Hello again thank you for getting back to me. I don't remember when my skin issues started, but basically I have had bad skin since I was born. My Neurologist didn't do any other testing on me. Also no tests have been done re: Endocrine Hormones, I have never heard of that. My migraines are at bay for the moment. I see my GI doctor in a couple of weeks thank heavens.

[LivingInHope]

You're welcome!  

I didn't mention that first time, but once knew a man who had a son diagnosed with scleroderma.  He seemed to feel a product called Barley Green had helped his son tremendously- just in case you want to look into that.

So, was there a long period of time between when you had the hardware put in your foot (so to speak- I've got a screw in one of mine myself, by the way) and the time when you started having skin problems?

Okay, on the brain MRIs, a pituitary MRI is done differently than a general brain MRI and the focus is on that tiny gland.  Has your endocrinologist done a complete work-up of lab tests re:your endocrine hormones?  If not, why not?

I see from this article:
http://emedicine.medscape.com/article/337534-overview
that cavernous hemangiomas commonly can cause headaches, and another article (see private message) says hypothyroidism and migraine have a connection that is strong.  I know what it's like to have migraines and am sorry you are suffering with them.

So, the neurologist who diagnosed you with the electromyelogram (EMG) did no testing after diagnosing your neuropathy to see if he could determine the cause of it?  All known causes should be tested for, if they haven't been.

You take Zomig- so you take a migraine abortive agent, but do not take a specific daily preventative medication?  Do your migraines occur only occasionally?

Have you discussed with your doctor about how your medication is not adequate in helping your gastrointestinal issues?  If not, please take the step to make an appointment to see them and do that- you must be feeling terrible!  Have you ever tried Chinese acupuncture and prescribed herbs for any of this?  Are you able to eat a acid reflux sufferer's friendly diet?  Do you have your bed at a slant for when you sleep?

  You might see some suggestions here in regards to gas:
http://www.medhelp.org/posts/Alternative-Therapies-/suffering-due-to-flatulence/show/1958014?personal_page_id=862335

[kelownagirl59]

     First of all thank you for responding to my post. Okay my ankle surgery I had done in 1994, the plates and pins were removed, but they did miss one screw which is still in there. I have MRI's done every two years because I have Cavernous Angiomas in the Lower Left Hemisphere of my brain, so they have to monitor these for fear of bleeding. I have had Hypo Thyroidism for many years. I have been on the same med for all these years as well. My Neuropathy is in my feet, I had an EMG, I believe it was called and it was then that the Neurologist diagnosed me with it. I take Zomig for my migraines. Tumors in my brain have never been discussed but I do have MRI's every two years. For my motility issues I take Domperidone from Canada and I take Dexilant for the reflux and Glyco for the constipation. I am having a very hard time right now with my motility issues, extreme bloating, nausea, gas and bad reflux. My skin issues I totally believe play big part in this whole picture. Thank you again for your response.

[LivingInHope]

Well, unfortunately, this is a patient forum and we can't diagnose over the internet.  Have you not had any autoimmune testing as of yet?  It must be so frustrating for you not knowing what's going on.  

I too had severe endometriosis and a complete hysterectomy.  Did you ever have a lack of ovulation?  If so, along with your hypothyroidism (which slows metabolism), did they ever rule out a pituitary tumor with a dynamically done pituitary MRI, with and without contrast?  I don't have the hypothyroidism, but had another symptom that led to testing and an MRI where they found a microadenoma.  Pituitary tumors are quite common and can adversely affect one's life in a number of ways.  Migraines can be, according to one article, a symptom.  

I have migraines also.  Your migraines, your slow motility including gastroparesis- are these things your doctor pieced together to say you had dysautonomia?  

Are you taking any preventative medication for your migraines?  Do you have an abortive medication/medications for your migraines?  

Are you taking medication to speed gastric emptying for your gastroparesis?

You say you have neuropathy.  Now, I have a parent who was tested for peripheral neuropathy and the neurologist who tested said they are only able to determine a cause in a certain percentage of cases (don't remember the exact number, but there was a significant number that weren't covered).  For my parent, they found monoclonal gammopathy of undetermined significance (M.G.U.S.).  Diabetes is something commonly associated with peripheral neuropathy- they likely ran an HgA1c test on you and ruled that out or no?

On prurigo nodularis, have you seen this article?
http://emedicine.medscape.com/article/1088032-overview
How's your kidney function?

You mention plates and pins- did they test you to be sure you weren't allergic to the components those plates and pins were made of or are they made of material which isn't known to cause allergies in anyone?

[kelownagirl59]

     Sorry in my previous post I made a typing error, I am a female not a male.