week of appointments/hopefully a week of answers: update

Ive been laying low after my week on the neuro floor. Right now the diagnosis is some type of epilepsy. Started a med that will be increased each 2 weeks. I do think it's helping a bit with the tremors in my right arm/hand. The MRI ruled out a tumor, thank goodness, but it also didn't provide any additional info. My neuro came in and went over all the previous diagnosis's in my chart and symptoms and test results that led to them. I have the autoimmune issues that are connected to the JRA, but I also have stand-alone autoimmune diseases, like my blood disorder. She said if this brain issue is somehow connected to the autoimmune mess, it's an atypical presentation. But when Drs here hoofbeats, the usually expect a horse. Sometimes the hoofbeats are something uncommon like a zebra. And then there is me-an alpaca.

Tomorrow I have a procedure to change the type of feeding tube. This is always painful for me. My jaw has a pretty limiting opening due to the replacements and a bite block must be used(like getting an endoscopy). A pediatric block will barely fit, and the muscles are not happy after. Thankfully I'm well known and have pain and muscle relaxers as needed afterwards. It'll be an outpatient procedure-yay for home:)

Later this week I have a few appointments down at Duke. Hopefully GI and Rheumatology can come up with a plan. My surgeon up here will have a phone consult with the Duke crew, and then HOPEFULLY, whatever surgery is needed will be done, and I'll have some sort of normal way to get food into my system. Right now the lower part of my esophagus does not work. That's where the systemic scleroderma is brought into play. Just to much pain when the food gets stuck. It's like a softball stuck in a garden hose. No pain med in the world can touch it.

So-hoping for some type of answers and/or some semblance of a plan. If your physically able, cross your fingersxxxxx

I've had various types. Currently a Gtube switching to a GJ.
Anything is better than an NJ (in nose), which I've had in the past.

Came home from the feeding tube switch to a flooded basement.

Are You Kidding Me!?!?!?

Back from Duke.

GI is pretty concerned. Obviously we both agree we need to figure out the problem and lose the feeding tube. She wants to 2 tests repeated down there. First is a barium swallow and the second is a motility test where a probe goes thru your nose into the stomach. This will show how my throat moves food. Previous testing showed no muscle/tissue movement past the 1/2 way point. This is why my local Drs are thinking scleroderma. Also need to know if the Nissen needs to be loosened, which is a pretty complex surgery, or will I be dependent on some sort of external feeds. I did ask if she thought the pain meds may be slowing something down within the gi tract, and she said no. Not these type of problems.

Then I saw my rheumy. This was a long appointment, about an hour. Ultrasound showed quite a bit of inflammation in many joints, despite pred and daily injections of an immunosuppressant. We also talked about the neuro issues. He is curious to see what the additional tests in 2 weeks will show. So far, I haven't had any side effects to the seizure med I'm currently taking, but I'm still at the loading dose. The dose will be increased next week as long as I'm tolerating it. Every 2 weeks it will be increased again until I reach the full dose. My rheumy did have an interesting idea. I also have APS, antiphospholipid syndrome. This is an autoimmune disease where my body attacks my blood which results in clots. Multiple PE's led to blood tests for the diagnosis. Rheumy said he's had one patient who had both APS and neuro issues. He was at the NIH then where there were some trials. This patient was on Coumadin and had reached a stable INR. BUT-when the amount of the blood thinner was increased(beyond the normal level) the neuro symptoms resolved. The thought was that, even while on blood thinners, the blood was still a bit "sticky" due to the APS. The sticky blood is not able to flow freely. More blood thinner, the thinner the blood. BUT-it's a fine line. Obviously, to thin, would not be good. I asked if my nuero should have known this, and he said no way. He sent her a long email with his contact info.

One other interesting thing: He was reading over my medical list and removed "chronic pain". I asked him why, and he said that some docs will read that and jump to the wrong conclusion when it comes to meds. He said I have obvious documented tests and scans to be in chronic pain, but there will always be that Dr who'll think I just want pain meds.

Switching the feeding tube from a G to a GJ seems to be a bit better. Due to the Nissen(which is extremely tight) I can't throw up, burp, or even hiccup. Imagine having indigestion, a full stomach, or nausea and not be able to get rid of it. It's pretty miserable. A G tube goes directly to the stomach. I was crazy nauseous, and the only way to relieve it would be to vent the G tube, but that resulted in me loosing the feeds. With a GJ, the G is in the stomach, and the J is in the small intestines. Feeds are delivered thru the J. Since it bypasses the stomach, hopefully the nausea will decrease. If it doesn't, I can vent using the G, and the feeds stay down in the J.

So-more and more tests. Gotta get the brain and stomach back in action.

Now, I'm hoping and praying that my basement does not end up under water, again :(

Praying that you find your answers and your basement stays dry!

Your welcome, but I think we all have our issues. It's unfortunate to need a place to talk to others in the same situation, but it's very fortunate to have one.