Thank you so much for taking the time to provide me with all the information! It has taken a while for me to go through it all, but I wanted to answer some of your questions and maybe give you a little more detail. I know this post is very long, and I apologize for that but there is no short way to explain what I have gone through and what I am still going through.

In terms of being diagnosed with depression and anxiety, there is a bit more to it that further complicated things. The very first symptoms I had were the seizures. They started in August of 2005. At the same time, I was going through a very traumatic situation at work. I tried to deal with the issue properly, but after several months of the problem not being resolved, I got the advice of a lawyer.  Within a very short time frame, I just could not deal with it anymore and kind of had a major meltdown. At that point I went to the doctor, who ordered me off work, and referred me to a psychiatrist. It was at that point that they diagnosed depression and anxiety (go figure!). The situation ended in a law suit, which I won. 

Simultaneous to this I started having seizures and began the long process of drug trial and error.     

Also, during the same time frame, my father had major surgery that did not go well, and we spent the next 8 months at the hospital. He was 4 months in critical care.  Although we did get him home for about 2 months (which being the only girl, the majority of care rested on my shoulders), he passed away.  That left my mom, who has health issues of her own, on her own after 65 years of marriage, and I lived an hour away and because of the seizures did not have a driver’s license.

So was the initial diagnosis of depression and anxiety really an underlying symptom of a disease or was it spawned from the overwhelming situation I was in. I was very depressed, but given the circumstances, depression would have overtaken almost anyone.

I had a psychiatry appointment this morning and questioned the drugs, but she assured me that those are the meds she wants me on.

I have been on thyroid replacement for over 35 years. I was a child when I was diagnosed. The first 30 years I never suffered from depression so I can’t see a link there. The meds work well to keep it in check.

I am not taking anything specific for the osteoporosis, other than Vitamin D and Calcium and Magnesium. It was only after a heated discussion with my doctor that the bone density test was even done. I specifically asked for the test because of the stress fractures and because of my broken wrist. Otherwise, I would not even know about that right now. Why not? Because it just got written on the chart and forgotten about!

I will ask to have my Vitamin D levels checked.

The fibromyalgia diagnosis came out of the blue. It seemed like a single symptom made the doc jump to that idea and just give me drugs. He added the Lyrica and the Celebrex. Neither of these drugs have made any difference whatsoever so I think his fibromyalgia brainwave has now been forgotten about.

The lamotrigine for my seizures is the only drug that has helped. I have tried many, and many combinations to no avail but the lamotrigine stopped the seizures.

For pain, the hydormorphine helps, but certainly does not eliminate the pain. On a good day, it works quite well. On a bad day, it does nothing. I have been on this since last April and the dose has been increased many times. Another issue is now, I am addicted to it and when I can go off it, it is not going to be easy.

I do take all of these medications every day. I have checked with my GP, my neuro, my psychiatrist and my pharmacist and they all say that none of these will interact. My point is that I don’t know how they can definitively say that because I highly doubt there has ever been anyone with my exact body chemistry, and taking the exact same medications in the exact doses who has been studied. I am very worried about the chemical cocktail, and would give anything to stop taking the meds, but . . . . .

There is a growing number of lesions on my brain, but they say they cannot define them and isolate them to characteristic of any one thing.

There are only a very few possible diagnosis that have remained consistent and remain being considered. There have been lots of detours. The only consistent ideas are Epilepsy and MS, Epilepsy and Vasculitis, or Epilepsy and MS and Vasculitis. Thus the reason I joined this forum.

As you have noted, a lot of my symptoms could be this or that or related to this or that. But what I need to know is exactly what is the this and that and or what is the combination of this and that. And, most importantly, how do I find out? AND, there have been so many possible “labels” thrown out there, that I don’t even know what they do or don’t think.

You mentioned you were curious about the extreme dry eyes, extreme dry mouth, difficulty swallowing, and skin rashes. I am not sure what information you would like to know, but I am certainly happy to tell you anything you want to know.  Briefly (okay – that word just doesn’t work well with me) I will tell you a little more, but please ask if there is more info you would like.

Extreme dry eyes – there was a Sunday that I just didn’t feel well. Nothing I could put my finger on, but felt worse than normal. I took that day and rested. Throughout the day, if I was looking at something (like the TV or my husband) for more than a few seconds without moving my eyes, everything would go digital. You know the little scrambled boxes that are on a TV screen when a movie is starting, or when you switch to a digital channel, that was what my vision was doing. I went to the optometrist the next day. The result of the tests were that it was like my eyes had both turned in to lazy eyes for some reason and up close my eyes crossed one way and in the distance, they crossed the other way. In between range things were fine. Because they could not put opposite prisms in a single pair of glasses, I have 1 pair with prism for distance, one pair with the opposite prism for close, one pair of progressives that has no prism (for mid range).  All day long I change glasses depending on what I am doing at that moment. The constant changing of scripts causes headaches and nausea. This is how it started.

Then about a week later I woke up and my eyes both looked like Santa suits. Bright red, itchy, burning. I went to show the optometrist and she really didn’t know what to think. She sent all of her findings to both my GP and my neuro.

Since then I have very regular bouts of the bleeding in my eyes (I will post a picture so you can see what I mean). I just wake up – and there they are. No pattern, no rhyme or reason. No answers. Along with this my eyes have become very dry. There is very little tear production. We have tried every eye drop known to man, and I have reacted to every single one. Even the ones sold in individual vials with no preservatives. An ophthalmologist has measured the dryness of my eyes and they are drier than normal. Why? I have no idea. The neuro felt that is was a symptom of vasculitis, thus the visit to the ophthalmologist, but, although they are drier than normal, they are not as dry as he would expect from vasculitis so they decided that was inconclusive.

As for the hemorrhages – no explanation.

Extreme dry mouth – this has gotten worse over time. I use special toothpaste and rinse but it really doesn’t help all that much. I am thirsty all the time and constantly have a glass of water in my hand. My mouth is so dry that I get painful cracks in my tongue that take forever to heal. I have been checked for diabetes because of the thirst, but that was negative.

Difficulty swallowing – this one is very troublesome and quite frightening. It happens when I am drinking liquid, or eating solids, and even on my own saliva. Swallowing is pretty automatic but I start to gag, and then I have to talk myself through the process of swallowing. It is like my body forgets how. It is not all day every day, but it is every day at least a few times.

Also, I have had a few episodes now where it feels like there is a big, fuzzy, slimy tennis ball in the back of my throat. It is a feeling like you have the worst sore throat ever and swollen tonsils. Sometimes after a day or so this feeling will pass, but on a few occasions, I have continued to gag, then to vomit, on whatever it is that is in my throat. Problem is that although the doctor can see me gagging and vomiting, there is nothing in my throat at all. They have done scopes during a couple of these episodes and there is nothing there. It lasts for a few days. After the tennis ball goes away, I have absolutely no voice for 3 or 4 days.

Skin rashes –they come and they go. They are most common on my chest, under my breasts, my neck and stomach. It looks kind of spotted and blotchy, and is pinkish in colour. It itches something fierce! When the rash comes, it takes a long time to calm down. Several creams and oral medications have been tried, but nothing works. I don’t know if the tests you mention have been done or not.

Bottom line is I need answers, and I can’t wait another 4 years. I have seen so many doctors and had so many tests that I have completely lost faith in doctors. I don’t have the energy anymore to keep chasing my tail. Enough is enough. I know that if you don’t advocate for yourself, you will go nowhere fast, but I have advocated for myself, been very persistent, done everything they tell me, had every test they have wanted, and all I have gained is getting more and more symptoms and getting sicker and sicker. Now, I am just too sick to stay on the medical merry go round. I need a hero – someone who can tell me what is going on and what to do. I need a Doctor House. Please tell me where and how I can find the hero I desperately need!