I have posted on my recent problems in both the epilepsy board and the Lyme Disease board. I've had some really strange things going on. It all started on Feb 1st. I had a GM seizure at work. My blood sugars were perfect when this happened so it was not attributed to my diabetes. Between the 1st and the 11th I had 2 more seizures. I have been waiting for my appointment to get here to have an MRI and EEG. The neuro. put me on Lamictal, 25mg, working up to 100mg. Since starting the medication I haven't had anymore seizures. I do have strange "episodes" of feeling like my BS is very low when it is perfect (115 to 140), having a floating feeling, strobing type effect in my vision, etc. Additionally, I am always tired. On top of the diabetes I also have Hashimoto's. My thyroid was removed in '99 but they left my parathyroids. I have been on Synthroid ever since. I am close to positive that my adrenal function has never been tested. (I mention this b/c I noticed in the other thread that it should have been done before anything else was.)
Counting my parents and siblings there is a total of 5 of us. Mom has Grave’s and Epilepsy, Dad has Rheumatiod Arthritis, Sis has Psoriasis, I have Hashimoto’s, Type 1 Diabetes, Psoriasis, and Herpes Simplex, and had constant problems with my tonsils and appendix up through my teen yrs. I don’t know what my brother has b/c he refuses to go to the dr. Scared, I guess. Needless to say, my family has a high ratio of autoimmune.
So, I guess my biggest question is should I consider Addison’s? I have read a lot here lately about what my symptoms could be related to. I want to be totally prepared when I see my neurologist. What questions to ask, what concerns should be addressed. I have found several things that cause my symptoms. I am fully aware that some autoimmune diseases “mirror” others and that any number of things could have 1, 2 even 3 of the symptoms that I’m having and have no relation to what I have.
Things that I am considering are: Epilepsy, Hyponatremia, Addison’s, Lyme Disease, Encephalits, CCM or AVM. I am scared to death of what this COULD be. I’m more afraid of the diagnosis than of the actual problems. Some of my symptoms have been going on for a couple of years but could easily be attributed to my diabetes or thyroid disease. The seizure activity is new and since I’ve started having them I have several other new, very bothersome things happening. I smell things that no one else can, I have this “strobe” effect several times a day, eye pressure, hand tremors, and some memory loss. I DO know that I don’t have a tumor or bleeders in my brain. They ran a CT in the ER when I had my last seizure. I have had a painful, burning type sensation in my lower back for about 3 mths. on the left side.
I am worrying myself to death and reading entirely too much, I know. But having to wait for all these test is very stressful and the only thing I know to do to relieve some of that stress is to educate myself on what to be prepared for. Anything you can tell me will help.
Last edited by ImTheLucky1; 02-24-2006 at 07:26 AM.
Do some reading on a Pituitary site and see some of the symptoms that others have. Your symptoms could relate. Some tumors in the brain are best imaged by a MRI, so it's good that you are scheduled to have one.
Karen
Went to pituitary.org. After reading many of the disorders caused by incorrect pituitary function I don't think there's much related to me. Of course I'm not a dr. so I could be wrong. Most symptoms were hormone related.
I doubled my Lamictal (ask doc if it was a good idea first) and some of my symptoms seemed to have eased up as of yesterday. Could be that I'm simply epileptic (I don't mean that lightly but it's easier to diagnose).
I'm not suggesting in any way that you give up your meds.
However, it seems like you are a magnet for autoimmune disorders. I personally know of a couple people who had IgG gliadin antibodies that stimulated neurological autoantibodies, resulting in seizures. It's a specific gene type that falls prey to this, and not necessarily the common genes known to cause celiac. However, it is an autoimmune gluten-related syndrome, and responds breautifully to gluten-free diet. There are only a couple of neurologists in the USA who are up on this, but it is more accepted in some of the European countries.
Look into Addison's by all means. If you can find a doc to test for neuro autoantibodies, or even one who will order a simple IgG gliadin blood test, it might be worth considering.
I don't really have much to offer, but just wanted to say that, if you remember how you felt, prior to one of your other diagnoses, and how scary that was. Contrast that with how comforting (if I may use that term very loosly) it is to at least know what you have, so you can do your best to deal with it.
Same here. And maybe you'll even find it's more simple, as the previous poster suggests.
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My opinions only, not medical advice. Always follow advice of your Doctor, not what I say here.
I'm going to the neuro. today for my test results. I've already decided that I am going to see an endocrinologist on top of seeing him. This is driving me nuts. I can't do anything till I know what's going on though.
I am DEFINATLEY an autoimmune magnet. 8 out of 10 times something goes wrong with me it's AI related. I have been told that it is basically a birth defect. My endocrine system just doesn't work very good. Until all of this happened I've just been letting the dr's tell me what was going on. I didn't know anything about adrenal function, cortisol, etc., even being involved. My brother and sister both have birth defects (brother had 11 fingers (they cut off the extra one) and sister only has 1 kidney). My parents are proof that "autoimmune's" shouldn't breed, LOL! In any case I'll holler back when I get home with test results.
Well, the good news is- the test came back normal.
The bad news is, the test came back normal.
Now the game begins. I have 2 options for endocrinologist. One that I have seen and the one my sister and her daughter see. I'm going to call them both today and see if I can find out which one is better. The endo. that I have seen B 4 mainly specializes in diabetes and has her own weight loss program. I'm sure that she knows how to read/give the right test but I don't know how frequently she deals with "other" endo. problems. My sister is convenced I should see her doc.
In any case I got to the neuro's office yesterday and after hearing his name frantically called on the intercom was told that he had a patient in the ER and had to leave. So I didn't see him. One of the head nurses came out and told me my test results. I explained to her that I really didn't expect them to find any thing. When she ask me why I told her some of the other symptoms I am having. She immediatly ask if I had ever had my adrenal function tested and suggested I should be seeing an endocrinologist. So, here we go........
Hi, I found this information on another thyroid board and you may want to check this out... this poster said basically that there is something called Hashimoto's encephalopathy and that one of the other signs often seen is grand mal seizures.....might be something to check out. Pixiek
Wow. That is so weird. I have spent the last hour and a half reading about this disorder and I'm seeing alot of interesting things. I will definatley add it to the list of possiblities. when I do get in to see the endocrinologist I want to be sure I am tested for every possibility to avoid misdiagnosis.
I hope things work out for you. I am like you in a way....all test look "normal"...yeesh.....hard to be sick these days.....pat me on the head sent me home.....if I get medicine you know what happens?
I get just the symptoms it is suposed to take care of as a side effect...ok, so this medicine is suppose to take care of my fatigue? It gave me fatigue...hard to get a break...hang in there! Pixiek
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