Hey there folks! Well, it's been a long time and so much has happened, but since this was the first place I started with, I wanted to update. I was denied for disability after being fired after 90 days as a case manager at a rehab.. they realized I was ill and didn't want to end up paying out short or long term disability. I was in so much pain all the time... between my back after the big surgery to all my joints and my legs... good lord I was taking a ton of pain meds and still hurt so bad all the time...
I went to my family doctor and told her something had to change... I needed help. Forclosure on my home had started, I had zero income, and my only choice was to go back to the hospital to work. Remember? I'm an RN with years of ICU experience. So she put me on fentanyl patches along with the percocet that I've long since been tolerant to. I got enough control to make it through some rough physical therapy and then onto a new job in an ICU at a Catholic hospital.. how do you like that for a gay girl? ;D
I was told by my endo after having a numb tongue for 4 days and my right hand going to sleep all the time that I was having strokes. I got put on plavix, and some of the neuro issues I was having got better. I've since had a brain scan that showed that it was improved, so I'm staying on it. I did have a couple weeks ago another episode that was either another stroke or a seizure, so I'm on seizure meds, too. My joints got way worse just before I started this new job. If I move my legs in my sleep, I get woken up by knifing pain in my knees. It has severely limited my movement, and I believe that it was one of the reasons I was having walking issues.
I was on a prednisone taper for 10 days, and nearly all of the pain went away! A few days after I was off, it was coming back, and by Tuesday was making me walk weird again, and the pain was tearing me apart. I argued with my primary via phone messages. She wants me to find a rheum, but she drew blood for all kinds of things including RA. I found that I have an immune disorder where my IgM is low, so that doc said I probably couldn't make antibodies to come up positive in these tests. Something was 'kind of off' in these tests, but I don't know what. I am supposed to see her next week, and hopefully get the results. She did finally call in more prednisone, but only 5mg per day. So far I'm still in a lot of pain, I don't know if that's going to be enough to make it go away again.
On my last visit to my back surgeon, he said that the damage he saw was consistant with a connective tissue disease, like MCTD as my CT was gone. A few weeks ago I notice a big 'female problem' being what I thought was just uterine prolapse... and found out that the entire cavity was caving in... my bowel and bladder are falling in. The doc said I need major surgery to rebuild all the walls and secure my bladder so it won't fall all the way out, too. She also said it would be very consistant with an autoimmune CT disease, as it's all CT holding it together in there. She said the surgery would keep me off work for at least two months.
Until then, I have to have this plastic piece fitted to keep everything in there. I was really floored about it. Being that I'm in my mid 30's, she said I was a little young to have that much damage. I'm not happy with the thought of surgery, as that was when my immune system did its last attack. My thyroid is all over the place lately, because of the AI nature and the flares I keep having. I think I'm going to have some other treatment to kill it to get some control. I'm very happy to be back at work, but I'm sleeping on average 24 hours after working before I can function again. I'm working 12 hour night shifts, but making good money, and I got a sign on bonus that caught some stuff up.
The SJS is driving me nuts at work, as hours go by without me having time to get a drink, which leaves my mouth like a desert, and thick junk at the corners of my mouth and on my lips. I have this spray stuff to put in my mouth, but I seem to forget about it... It's a little embarassing, but what can you do?? My eyes are about the same, I use drops when it really gets crazy. I'm still on the downs about not ever being able to wear contacts again.. not that it worked when I did try it years ago.
I have answers for nearly everything, just not exactly what kind of thing is going after my heart and joints. I haven't had CHF in awhile.. so that's good. I still have to take the beta blockers because my heart rate is still out of control. I still get chest pain that comes and goes.. I have learned just to ignore it. The trigeminal neuralgia is driving me crazy... some days I have to take more than 1000 milligrams just to get it under some control, and then I'm dead asleep. It seems to come on at the beginning of a flare. I need to find a decent rheum. that can understand that I can't get the tests to come up positive because of the immune deficiency, but I still need treatment, and they're going to have to go by the symptoms.
I'd love to have some control over this, and I guess at some point I might. I have little spurts of energy, but then I'm like a slug. I'm still hot all the time, and have been having periods of sweating like crazy, but being cold. I have NO idea what that is... or when I will find out if ever. I keep having horrible night sweats, even with the house at 66 degrees and a fan blowing on me all night. It seems like I'm never comfortable...
I haven't found a doc yet that thinks there is anything more to SJS than dry eyes and dry mouth. I think it would help if I could find a doc that knew a little more about these things so I could get some accurate answers and accurate treatment. I have been SO busy with work and sleeping from being sick that I never get out of the house, and hardly ever get on my computer, either. I even started my own Buddhist group only to have to have others run it because I'm never around. It's horrible, but I just don't have the energy to do anything.
I'm trying to do some reading here now, and get caught up on what's been going on. There are a lot of new names that I don't recognize, but also a lot of the ones that I do. Just wanted to give you all an update and see how you are. Happy Thanksgiving! If anyone has any ideas as to what may be the problem I'd appreciate any feedback you can give.
Jag
Hi Jag
I'm not sure we have met before, but I just wanted to say 'Hi'and thank you for your update. What a roller-coaster you have been on!
Can I ask you about your meds for seizures/trigeminal neuralgia? I only ask because I work in the epilepsy field and two things spring to mind when I read your information.
1. Some anti-seizure meds can be used to treat trigeminal neuralgia, so maybe your doctors could sort you out one that could treat both conditions
2. If a person is given too high an initial dose of anti-seizure med, it can trigger seizures. So, if you started anti-seizure med for the trigeminal neuralgia and then started with seizures, could it be that the dose you were given was too high.? If you want to discuss this further, please feel free to message me.
I have to say that I am not medically qualified, but I am a senior in my field, and these two things jumped out at me. I apologise most sincerely, if I am well off the mark.
By the way, as a 'good Catholic girl :o I had to laugh at your post in the Catholic hospital! (By the way, my husband says there is no such thing as a 'good' Catholic girl ;D).
I'm really sorry to hear about the prolapse. I had a total hysterectomy three years ago, due to lots of heavy bleed (I'm 51), and found lots of support on the hysterectomy association (UK) website. There were several ladies on the site who had prolapse repairs, so you might want to google it, and talk with ladies who understand.
Take Care.
Kathyx
I've been on and off neurontin for several years. The seizure med he started me on is depakote. He'd put me on a seizure med to prevent the trigeminal pain, but I hated taking it for nothing, as I still had the TN attacks... so I weaned of it after taking it for only a couple weeks, but that was many months ago. I don't take the neurontin all the time, as I can't stand being so tired. I only take it when it's getting bad, or I'm headed into another flare which sets off the TN. The endo know it's how I take the neurontin, and he's pretty well rounded education wise... so I'm thinking he'd catch it if that was the problem.
However, he put me on the anti seizure med depakote, without doing an EEG. He's not sure if it was a stoke or a seizure yet. I'd go more to stroke, as the tiredness came before and not after. Also, he's proven that I've had prior strokes. I will ask him next time I'm in about the double med thing, but if the depakote alone keeps the TN away, the I wouldn't be taking the neurontin anyway.
Thanks for your input!
Jag
Hi Jag
I'm really concerned that the endo knows and approves of you taking neurontin on and off. Many of the anti-seizure drugs, including neurontin, are designed to be gradually introduced and gradually withdrawn, otherwise they can trigger withdrawal seizures. Please have a look at the British National Formulary information on this link
http://www.bnf.org/bnf/bnf/56/10869.htm?q=%22neurontin%22#_hit
and pay attention to the caution about tapering doses over at least a week.
Regarding the EEG, it's not relevant that he has given you meds before an EEG. An EEG will only show what's going on in the brain at the time of the test - not what happened before, or what may happen afterwards. It's a snapshot picture, just like a polaroid photo, and cannot, by itself diagnose whether a person has a seizure disorder or not. In fact, many people with a well documented history of epilepsy will have an EEG that is clear - which just means that no epileptic activity was taking place at the time of the test.
I'm not an expert in stroke symptoms, but I do know that, depending on what type of stroke a person has, they have a higher risk of developing epilepsy than people who have not had prior neuroloigcal insult.
Depakote is a well respected anti-seizure drug. From my work on a Dept of Health guideline group, I understand that neurontin is not as effective a seizure drug as was first hoped. However, it is used and very effective as a pain med, especially neuropathic pain med, for many people.
Interestingly, many of the other anti-seizure drugs are effective for trigeminal neurolagia as well as seizures, specifically one of the older drugs, carbamazepine, also known as Tegretol in the UK. Another one that is used in Phenytoin (Epanutin), although this is an older drug and can cause some cosmetic side effetcs.
I will reiterate, I am not a qualified doctor, or medically qualified, but I am very experienced in the epilepsy field and have been seconded to several Dept of Health project teams, so I feel qualififed to give you this general epilepsy information, as I feel it would be immoral not to.
If you need an epilepsy speciliast to oversee your neurolgy needs, the Epilepsy Foundation of America will be able to give you names of qualified specialists.
I hope this helps.
Kathy