Posted by 2sense on April 12, 2002, at 13:05:07
In reply to Brain Lesions » 2sense, posted by IsoM on April 11, 2002, at 19:50:52
This is for Ron and Imo since they asked. I had a bout of optic neuritis 3 years nearly to the day 04/99 it wasn't a bad one, my sight was back in less than 2 weeks and they did a full 1 1/2 hour closed MRI and found nothing (no lesions, etc.). Since optic neuritis is usually the first presenting sign of Multiple Sclerosis (MS) we were very relieved that there were no lesions found. In the last three years I have had no episodes as they are called to indicate that I had MS or CDMS (clinically diagnosed multiple sclerosis -- which is a fine distinction in terms of how the MS manifests itself). As I did have pain in the eye and am white and a woman I had a high risk of developing CDMS within 5 years (if I was going to). At that time the ophthalmologist decided not to give me the interferon or cortisones or whatever therapy which is sometimes done (usually done when lesions are found w/ the optic neuritis) -- but when done it is found bouts of optic neuritis are more likely to occur in the fellow (other) eye or the same eye BUT the development of "full-blown" MS is staved off for up to 3 years. I have been monitored for the psychiatric issues (AD/HD, depression associated with the Hashimotos, and anxiety from a chronically stressful lifestyle -- often times I want to open a web site named: www.ifyouthinkthatyourhaveitbadjustreadthisandyouwillfeelawholelotbetter.com -- I had the hemorrhaging from fibroids since last May which made me very anemic (like needing a transfusion), my husband's company which is a start up NEEDS him desperately and has gone through 2 lay offs in less than 5 months (06/01 and 10/01) -- about late 09/01 my hubby developed a severe case of depression and began treatment (we lost people in 9-11 -- where I grew up is a bedroom community for people who hop on the train and go to the WTCs, etc.) and then the ER trips started for the hemorrhaging. I was passed from doctor to doctor in this ob practice and at one point was given Prometrium and it made me highly post partum depressed (after only 4 doses) – this was all around the end of November and the first part of December – it was decided to do a hysterscopy and a D&C to get me through the holidays and then do a hysterectomy (leaving in the ovaries – thank God instant menopause is one thing I did not need at that time). Also in October the psychiatric nurse who had been treating myself and family for AD/HD and husband for the depression moved to CO and the kids went to her boss, Dr. X and my husband and I went to Dr. Y the head of this place – now the eating disorder therapist and I have met about once a week for a year and made fabulous progress because it is all about control – and having once worked and staying at home with three LD children who have the genius IQ’s, AD/HD and a school district who attitude is, “Yeah, make me.” for the tiniest of requests (ex. an assignment sheet for instance when my oldest was in 3rd grade) makes for a lot of stress – hypersensitivity, etc. My husband and his AD/HD may be more than just that but he definitely has it – we’ve all been tested mucho times by different groups, people, etc. So Dr. Y. puts him on Effexor and he is sleeping all the time or at work while I am holding down the fort, and taking care of business and dealing with all the doctors, meds, 3 schools, etc. Dr. Y. tells me he thinks I have some sort of mood disorder and ups the Klonopin to 4 mgs. (This is around 11/00 – and I was having trouble sleeping so I wasn’t too resistant to the idea) – I did disagree and researched the heck out of the differing menu of mood disorders he proposed I might have. Well, late November Dr. Y has a massive stroke and cannot even read – it is very sad. So hubby and I are passed to Dr. X (the golf player). Now I had seen Dr. X like 5 years ago one time and then just went to his nurse because she gave a damn about environmental factors adding to the stress and just didn’t say: you have a thyroid disorder, a brother who might have bipolar and you talk fast – right and all flowers are tulips. So I have the hysterectomy (TAH) mid January and have some complications (infection in the incision, and a couple of other things and the surgeon just blows me off – so I go to a colleague of his and she says – yep it is infected here’s a course of Cypro, go get an IVP, etc.) The IVP comes back reporting I have a filling defect indicative of bladder cancer so off to the urologist I go (no one exactly knows why the Synthroid keeps the antibodies of the Hashimoto’s at bay and levels out your TSH BUT I didn’t know and no one told me I found it in the PDR that taking iron (which I was due to the anemia) and Synthroid basically lowers the effectiveness of the Synthroid AND emotional and/or physical stress reactivates the antibodies … which puts your body back into hypothyroid and depression is the first thing to strike – now I am on the Wellbutrin SR 150 mg 2X a day – it cuts my smoking to nearly nothing and hasn’t those yucky side effects and you all know what I mean – the urologist gave me a cystoscopy and said all was fine – found the IVP films but the radiologist who read them was there that day – eventually they decided I should have an abdominal ultra sound (which I had one week after the TAH because I had a couple small blood clots) … that got put off because I ventured to the library on 02/19/02 with my 13 year old daughter (I love books of all kinds) and was there maybe 10 minutes in the stacks and knew I was going to faint (near syncope –sink co pea) so I drop down put my head between my knees and then the tachycardia started (I had my first Summer of 1981 thought it was an allergic reaction – your heart goes like three hundred miles a minute and if not short circuited (for you computer people you need to control-C it – well if you’re Unix anyway) via manipulation of the vagal nerve it just goes on (and it damages the heart by making the muscles stronger but the more episodes the weaker it becomes and add the anemia to it and … I have been through all kinds of tests to attempt to get an “attack” on an EKG but haven’t – my only success in stopping them is sticking my head (within the first 30-40 seconds or so) in ice water (a bath tub is always good makes for a bad hair day though … gotta keep your sense of humor) – well I knew the layout of the building and there were no bathtubs, and the sinks were too shallow (and toilets, … well) they restrooms were to far away anyway … and I knew of no janitor closet – so I crawled to the reference section and used my cell phone to call my husband and then the head librarian (a friend thank God) to call the ambulance (which the local one is right behind the community building and the police are housed there also – so I had fast service – in parallel I was studying the reference books to see if I had the bad (ventricle tach versus atrial tach and also who were the best doctors … I know I know what a person I must be). So I go to the hospital (they got it on EKG) and I am chest x-rayed and admitted for a stress test that involved c scans and something they inject – bottom line my plumbing was excellent but my electricity needed repair (they think it is an AV reentrant tachycardia (AVRT). re-entry problem – so I found the best (and right here in river city) and that appointment is next Tuesday – that will be an electrophisology test and an ablation of the offending node (if they find nothing else – it is done – like an angioplasty through the groin, etc.) I haven’t been permitted to drive since. Ok .. So two weeks before Easter I found out my parents and sister and husband are coming in on Good Friday and of course the family decided to get the flu like dominoes and I am up and down and my Klonopin script runs out and the doctor can’t see me until 09/06 and we’re talking over the phone because I want off of this stuff (I also became lax in making certain that my Wellbutrin doses were at least 6 hours a part which lowers one’s seizure threshold especially if one has an eating disorder (my blood sugar was low, my electrolytes were off – found this out in the hospital for the heart) – OK I decide to get the script filled and call in Tuesday the week before Easter and the doc didn’t call it in, I called again Wed and it was there Thursday night but my husband the only one who can drive at the moment and there is just so much you can ask of your friends (and yes I am aware this is long and a brain dump but I have told many because they keep asking so it is like writing on automatic pilot) … I do not sleep at all Thursday night (another seizure threshold lowering thing, as is caffeine – you have to keep in mind all the “stars” were lined up and the button pusher was the Klonpin cold turkey (I was on 4 mg.). So on Good Friday my husband gets the meds and I would have taken them and gone to bed but the family is coming in at 6 or 7 PM from NJ – so I am on the bed at 6 reading P is for Peril (Q is for Quarry is coming out … just one of the genres I like) and suddenly I am on the floor on my side my husband is holding me and asking me what day it is, who my best friend is and who is president. I am annoyed I figured I fell off the bed when I fell asleep reading and he was making a big deal. No, no my 13 year old walked in right at the start of the grand mal and saw the whole thing and scared the **** out of her – Eric the son called 911 Madeline the 6 year old was told to stay downstairs and suddenly the room is filled with state EMTs asking the same questions. I am on the stretcher being taken down the outside steps when my parents drive into the driveway (you’d have to know my Dad to see the humor in this .. I know I shouldn’t be making light of this) .. Our neighbor who is a doctor was vaulting up the front yard to talk to the kids and Bob who was putting his shoes on to follow the ambulance – I couldn’t resist but I called to my husband and said, “It is George W. before that it was his father with that other guy in between.” Okay now you all know what my politics lean towards. I get to the hospital again and am on a gurney for 2 ½ hours and in a room finally for 3 hours and when all is said and done I get to go home (it was midnight) and take the Klonopin. Easter weekend ends and Monday all leave and I call my internist who sees me Tuesday and schedule me for an EEG and an MRI the next Monday and Tuesday (that would be this week). Suddenly Dr. X can see me Friday – so we all go and we as a family see the therapist to talk through the trauma of the kids and the grand mal. Okay EEG Monday and MRI Tuesday (w/ general anesthetic – closed MRIs are coffins for me) – Wednesday the doctor calls (the internist and says that they found a seizure focus on the left front temporal lobe of my brain – meaning I am prone to seizure but may have never had one if I hadn’t cold turkeyed the Klonipin (which that is not specifically stated – tapering yes, talk to your doctor yes, but you have to dig deep to find that you can have a grand mal doing that) this info was derived from the neurologist who saw me today at 8 (he normally couldn’t until August but found my case fascinating) – the MRI the internist said had lesions. So the neurologist today showed us and said that they are very tiny and if I hadn’t have had the optic neuritis he wouldn’t be making the 90% diagnosis of MS today but he is – he expects given it started with the ON it will be very mild. After the heart is fixed he is going to start me on injections (daily) that keep it at bay and slow its progress AND today he put me on the anti-convulsant Carbamazepine (generic name) brand: Tegretol. I talked to Dr. Y and he is overjoyed since it too is a mood stabilizer but wants to see if I can tolerate before considering taking me off the Klonopin. OK who knows anything about: generic: Carbamazepine AKA brand: Tegretol AND/OR Copaxone (that's the daily injection for the MS -- this is a doctor who is an agressive treater even with the mild symptoms, etc.)? Guys this has only been what the last couple of months – it has been like this for 6 ½ years ever since I started staying home and moved to where I am .. Which I suppose has to stay a secret right? Strong faith in God and a good sense of humor – that is what keeps me going the shock absorbers of life. Disclaimer: If I offended anyone, I sincerely apologize for it was not my intention, but nonetheless I am sorry – if this was inappropriate to put on the board, again I apologize … if by chance it helped anyone with anything – Thank the Good Lord… and that is a whole lot more than 2sense J
Sue
PS Like you need one, I ran this through the spell check but didn’t really proof it hope I didn’t make an full idiot of myself J. Anxious to hear from you all.
poster:2sense
thread:102236
URL: http://www.dr-bob.org/babble/20020408/msgs/102878.html