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Never saw this coming
Posted: Thu Aug 18, 2011 6:00 am
by Kiki
I have written here before about seizures, I now realize this is not a common problem. When I first was dx I the so called "normal" symptoms, numbness in my left side. I understood I thought about MS, now I am confused. I went to the doc yesterday the neurologist, useless, lol they took me off Keppra to dilantin, can't seem to stop the seizures, just a damn good time here. I have the blackest thoughts these days, doc says it is the keppra, I am not sure if is or what. I am taking over 20 different meds, I am also diabetic and have to see the doc for that, I have a team lol, too damn sick to believe this is happening to me. Have I done my blood checks, hell no, there is dust on that baby, so I am sure I am in for a lecture. I also have lost certain parts of my memory, friends and family will tell a story that I am in and I have absolutely no memory of it at all. It is bad bad bad, they have taken my drivers licence away. I never saw this coming, also with this big lesion on my brain is making me crazy and it is hard to watch myself lose my own damn mind. When this new neuro did the first MRI on my brain, he stopped right there and didn't even bother looking at my spine. I also didn't know that seizures progressed, I started out with the simple partial seizures, than it went to complex partial seizures, now we are at grand mal seizures. WTF is this about, they are trying to stop me from having seizures and so far nothing is doing it. The kappra the doc says is making me crazy so they loaded me with dilantin heavy does last night, you can't just stop the kappra. So I asked my doc if I was now considered an epileptic and of course I am. This is not what I expected, no doctor told me I would lose my mind have grand mal seizures and be two hairs away from a baboon. Sorry for venting, just angry and sick.
Posted: Thu Aug 18, 2011 8:04 am
by munchkin
You must be terribly frustrated and scared. Hold on and see if the med changes help. Let us know how things are going.
Posted: Thu Aug 18, 2011 8:16 am
by fee001
Kiki,
Do you have type 2 diabetes. I am asking this for good reason ok.
Fiona (pm me if you prefer)
Posted: Thu Aug 18, 2011 2:33 pm
by Kiki
I am type two, but I thought since I am so skinny now that it would be under control, at least I hope it is.
Posted: Thu Aug 18, 2011 4:43 pm
by jimmylegs
sorry to hear all this kiki.
the closest i came to losing my drivers license was when as it turned out, i was zinc deficient.
zinc is known to be low in ms and diabetes patients. there are also studies linking low zinc and seizures.
Serum zinc and magnesium in type-2 diabetic patients
http://www.ncbi.nlm.nih.gov/pubmed/19651009
Serum zinc level was significantly lower (mean 2.03 +/- 0.39 mg/dL) in diabetic patients as compared to control subjects (4.84 +/- 4.217 mg/dL, p = < 0.001).
at the very least that suggests you may benefit from a zinc supplement (but this abstract has probs, see math note below).
the lower your zinc level, the higher your ammonia level will go. the CNS is very sensitive to elevated ammonia.
some hyperammonemia symptoms:
Particularly evident are neurologic symptoms – including poor limb coordination, dysdiadochokinesia, hypertonia, ataxia, intermittent tremors and seizures, lethargy, as well as decorticate or decerebrate posturing.
ZINC DEFICIENCY CAUSING HYPERAMMONEMIA AND ENCEPHALOPATHY...
http://meeting.chestpubs.org/cgi/conten ... 36/4/37S-d
Zinc deficiency was also considered amongst other etiologies of hyperammonemia. The zinc level was found to be 50 microgram per deciliter [JL edit: that's 7.65 umol/L]. In addition to standard therapy with lactulose, zinc therapy was initiated and ammonia level started trending down.
fyi optimal serum zinc level seen in healthy controls 18.2 umol/L.
also
During the course of her evaluation she was found to have an ammonia level of 437 micromoles per liter (mol/L)...
fyi for ammonia "Reference serum levels are less than
35 µmol/L."
if you can get tested for both zinc and ammonia that might be a start.
if not, pick up a bottle of zinc powder capsules and do the taste test to see if you are deficient.
http://www.msrc.co.uk/index.cfm/fuseact ... pageid/653
The test solution is zinc sulphate in purified water, at a concentration of 1 gram/litre...
Grade one response: no specific taste sensation: tastes like plain water. This indicates a major deficiency of zinc requiring a supplement of at least 150 milligrammes (mg) of zinc per day.
Grade two response: no immediate taste is noticed but, within the ten seconds of the test, a `dry' or `metallic' taste is experienced. This indicates a moderate deficiency requiring a supplement of 100 mg of zinc per day.
Grade three response: an immediate slight taste is noted, which increases with time over the ten second period. This indicates a deficiency of minor degree requiring a supplement of 50 mg of zinc per day.
Grade four response: an immediate, strong and unpleasant taste is experienced. This indicates that no zinc deficiency exists. If this is the response to the first test done then obviously the diet already contains sufficient zinc and no supplement need be taken. If this is the response, however, after a period of zinc supplementation then the diet, prior to the supplement being given, must be assumed to have been deficient. Thus, if a relapse to this deficient state is to be further prevented a regular maintenance dose of zinc is required. One 15-20 mg dose per day is usually sufficient for this purpose.
During any period of supplementation the taste test should be repeated at appropriate intervals and the subsequent dose of zinc adjusted according to the above instructions. In addition, it should be noted that when starting any programme of zinc supplementation the starting dose should always be a minimum dose of 15-25 mg. This is then increased slowly in the following manner stopping at the required level as demanded by the results of the taste test. Thus in the first week: take one 15 mg (or 25 mg) dose per day. Second week: two 15 mg (or 25 mg) capsules or tablets per day. Third week: one 50 mg dose per day. Fourth week: two 50 mg doses per day. Fifth and subsequent weeks: three 50 mg doses per day.
The reason for this protracted introduction is that zinc treatment, in the presence of zinc deficiency, may initially induce a feeling of fatigue or depression: a slow introduction reduces this possibility.
if you don't want to bother with the test, it's pretty cheap to try supplements and see if they work for you. but do follow the staged introduction outlined above. my doc said just take 100mg/d for a month. i used to get really sick to my stomach when i did as she had recommended. we had to break it down into 50mg morning and night.
hope that helps Kiki
jimmylegs
MATH FOOTNOTE RE THE STUDY ABOVE
i would love to get that 2.03 +/- 0.39 mg/dL converted to umol/L to see how close it is to (or more likely far from) 18.2, BUT, using a standard units conversion factor it doesn't make any sense. i think there is a typo in the units in the article.
NHE, check my math?
zinc conversion factor: µg/dL * 0.153 = µmol/L
first we have to take mg to µg, and 1mg = 1000 µg, so
2.03 mg = 2030 µg/dL
2030 µg/dL * 0.153 = 310 µmol/L - that is seriously wrong.
Posted: Thu Aug 18, 2011 8:05 pm
by fee001
Hi! me again,
There is a condition called Candidiasis/candida that can be bought on by stress, can cause either obesity or weight loss, can cause brain foggyness, and can cause type two diabetes.
http://www.candidahouse.com/page/1402655
fiona if this doesnt work google....candida and diabetes..... you shud get info
Posted: Fri Aug 19, 2011 4:14 am
by Kiki
Thank you for your replies, I am going to get some zinc, I am desperate here to stop this nightmare. I am starting to have rages, doc tells me it is all the different meds. They are trying to get my meds right as you can see nothing is working. I hate this so much, I feel tired all the time, but about 4 weeks ago I was all hyped up and not tired at all. I feel trapped not being able to drive, the whole situation sucks balls.
Posted: Fri Aug 19, 2011 10:11 am
by jimmylegs
zinc deficiency (among other things) can also promote candida overgrowth
Zinc Deficiency and Immune Function
"Zn deficiency in adult animals can result in abnormal immune function.
Zn-deficient animals can show an increased susceptibility to a number of pathogens including Candida albicans..."
Posted: Fri Aug 19, 2011 10:17 am
by jimmylegs
you're welcome kiki, hope the zinc helps you ASAP.
Posted: Fri Aug 19, 2011 1:47 pm
by Bethr
Hi Kiki, I can somewhat relate. When I first started to get ill 4 years ago, I lost use of my right hand and had a mild seisure a few weeks later. MRI showed a brain lesion, and EEG showed slow brain waves (possibly epilepsy). I've done a lot of research, as my sister was told she had MS 20 odd years ago. I have no diagnosis.
Epilepsy has been associated with iron levels, as has brain lesions in people with high iron levels (hemochromatosis). A lot of people with
high iron also develop diabetes.
Anyway, long story, but I later found I had high iron levels, and had a genetic tendancy to load iron (a C282Y gene). On reducing my iron levels, (2 years down the track), I got better and have no further "brain" problems. The fatigue is gone, as long as I don't let my iron levels creep up.
So what is wrong with me? Specialists have few suggestions, but the one that I think fits, is a type of Porphyria, which is another genetic problem.
I have problems tolerating alcohol, hormones, and some drug types, so it all fits in nicely. Porphyria is often diagnosed as epilepsy or MS in error, as it is thought to be rare and isn't looked into.
Porphs (as they are called), have trouble metabolising certain types of medications, alcohol, hormones, and iron amongst other things, but can live a relatively normal life if they avoid triggers.
It's worth looking into as I have an acquantance with a type of porphyria who originally was told it was epilepsy. Luckily he had one inquisitive Dr. who went the extra mile to investigate.
All the best in your search
Posted: Fri Aug 19, 2011 3:05 pm
by Kiki
Well I had a blood test today, and just 6 hours later, the nurse called and said that my levels of dilitan in my blood was 30 normal levels are 10, so I am toxic and have to stop the dilitan for one day, of course I have to take my other seizure meds. Thank you so much for all your replies, I am looking at all of this and trying to take it in. When they call you the sane day you had your blood drawn I am thinking it takes a couple of days to get the results, I am thinking if they call just 6 hours later this is not good news. The whole thing is a three ring circus but I have to laugh, it helps with coping. Thank you once again to care enough to reply. I was in remission for at least 7 years and I just figured it would not come back, and not like this. I am good at denial.
After spending the whole life living in hell,
It's is hard to believe in heaven
Posted: Fri Aug 19, 2011 6:20 pm
by bartman
I can't help but post. You must check into Bartonella and Lyme. Bartonella is notorious for causing seizures and rage. Check out by google- Dr. Burrascano's treatment guidelines under Bartonella Like Organism. You need to find a good lyme doctor immediately.
Posted: Sat Aug 20, 2011 4:44 am
by Kiki
I am going to bring this up to my doc, I am there all the damn time I might just move in to the clinic with them.
I now have diabetes, MS, epilepsy, what else can come to the table. I talk to the psych yesterday, by the way I was a social worker who really can't work with black outs and seizures so I am going to apply for disability. My daughter is in South Africa, she is in the peace corp teaching children english, my husband is working in kuwait, trying to get into America to be with me, I was living in Kuwait and my husband shipped me to America to my mother, because the treatment in the mid-east is not the best, so here I am stuck here. I hate having to mess with immigration, to be honest I am as much help as a tit on a bull. Of course there is problems, one is the lawyer my husband hired, useless. My husband can come into the country only as a visitor, and we want him to be able to stay, now get this, he can't come to America while we are in the middle of immigration, so the whole thing is really a comedy show. My mother I love her to death but she doesn't fool around with me, and makes me do what I need to do. Now my husband, who is an English professor, I can get away with a little bit more, god I sound like a child But when I do something he wonders about I just tell him it's an American thing. At least that is the way I feel, can't drive, can't do anything but sit on my butt. Sorry for venting, but I am sick of this, I want to go back in REMISSION PLEASE.
Posted: Sat Aug 20, 2011 7:13 am
by bartman
Your doc will deny Bartonella and Lyme til his death, it's going to be up to you to get the antibiotics and do the research. Tick borne disease aka Lyme is the biggest controversy in the history of medicine. Infection is a possible cause for seizures. The only way to tell is to treat and monitor the reaction called a herxheimer. Ask your doctor to prescribe Minocycline + Copaxone as there are studies indicating that it is the most effective MS treatment. Ironically, it also treats Lyme and has some effect on bartonella. If you have been sick for so long it will take a long time to get better and it is a very difficult journey. You will get worse before you get better due to the herxheimer reaction. Go slow, find a lyme literate doctor and educate yourself on the lyme disease controversy.
Try to find a lyme disease support group. Rage and seizures are not so common in MS but much more so with these infections. I hope you get well, minocycline and the wheldon protocol helped my cousin tremendously. Your current doctor will sluff it off and give you a blood test that is 70% inaccurate in a immunecompetent person. Since you have probably done steroids and other immune suppresive MS drugs it is very unlikely you will test positive. You really need a good doctor who knows lyme.
Posted: Sat Aug 20, 2011 7:37 am
by Kiki
I wish I could say it is the interferon, but I started to have seizures while I was on no MS meds. My old doc was useless, when my mother saw one of my seizures she suggested I get a new doc. I did and to my surprise I was suffering from seizures. I have a pretty good team of docs, but now I have so many things on my plate it is beggining to be too much. I have seen at least 6 different neurologists, my first one was a woman and wonderful, she explained everything too me and when she saw my MRI she cried in front of me, which really showed me she cared. I am at the stage where we are trying to control the seizures, which has been going on a year. I haven't had seizure since last weekend, so I am hoping maybe I can go at least two weeks, that would be awsome.