I posted in late 2003 about my sx, which hit between May 2003 and Oct 2003: first sx (May) were short-duration parasthesias of hands (ulnar distribution) and feet, and a skin thing dxed by the Prof of derma. here as "transient rippling of the skin", It's v. rare: a kind of myotonia (I think) of the sub-cutaneous muscles. When I crumple the skin it doesn't uncrumple right away.
Later (Sept-Oct) came fatigue, muscle aches, and widespread fasciculations, with insomnia, headaches, nightsweats, and occasional blood in stool (history of mild distal ulcerative colitis, remission since 99). Some joint pain too.
After doing all tests you recommended (Brain/spine MRIs, EMGs and NCVs,bloods incl. inflamm. markers, ANAs etc) all OK except CPK, which rose to a high of about 380 before settling into the mid 200's. So they thought maybe very mild polymyositis (and I worried about incl. body myo given distal sxs and lowish CKs).
But then blood Hg turned up 153 micros / litre (about 10-15 X norm and 2-3X max. non-toxic). They say my sx all fit in.
Exposure source (chronic? or acute last spring?)as yet unknown; they're testing my wife to narrow it down. Urines not back yet.
My questions: does slightly elevated CPK fit in here? Perhaps just caused by 6 months of fascics and what the doc describes as a "very muscular build"? Is penicillamine the best treatment, given my sx plus some possible CNS sx (irritability, maybe slight forgetfulness) - or should I try DMSA? There's no toxic. dept. at the Univ. hosp. here. Finally, given stabilized sx since Jan, what's my prognosis? Thanks!
Sorry for the delay, I am no an expert in this area and needed to investigate a little. I can not find any medical literature stating that mercury poisoning actually causes muscle injury. It is very well known that it causes problems in the brain, and can also may injure the neurons that supply the muscle and sensory nerves. In addition the literature I read, stated that chelation has not been proven to speed recovery. But as you are probably aware already penicillamine is less toxic then DMSA. There can be late effects of mercury toxicity, which can not be predicted. There are two types of mecury intoxication, inorganic and organic. Based on the weakness symptoms, this would be more consistent with inorganic toxicity. I would recommend trying to find a toxicologist who can perform an evaluation, and be used as a resource for you. Good luck.
Good to hear from you again and glad to hear your s/s are better. I am currently exploring testing for mercury toxicity for myself. If you'll recall, I have had similar s/s as you. I have been using chlorella and green drinks on my own to chelate. I had all my amalgam fillings removed also. I have 3 root canals to explore now for bacterial problems. I feel better as well and I am thankful to God for that. Good to hear from you. I now have a doctor about 2 hours away who is treating me. I thank God for him also. All my best to you and your wife ( I think I recall you posting about her having a few difficulties as well).
It could very well be bacteria in you teeth and gums.The waste they put of is the stuff the army uses for germ warfare.The can live in your mouth and make you hurt everywhere except where they live..........Terry
Thanks CCMD for your reply, and sorry to have forced you to hit the books! I've looked into the issue a lot myself, needless to say, but there's a limit to what a non-medically-trained guy like myself can do with the information available.
I hope that it was worth the time for you - from what I have read, some cases of "benign fascics" with "extra symptoms" may well be Hg-induced (and also, unfortunately, tough to diagose, given the lag-time between exposure and symptoms and the elimination half-life of Hg in easily testable stuff like blood). So who knows, it may help you dx someone someday! In any case, you've provided me with some really valuable info.
For instance, I hadn't reached the conclusion that my sx were more likely to be from inorganic Hg than methyl (organic) Hg. That's very useful because it narrows the field as to exposure source. (Dental fillings in my mouth and the two dentists' offices in my building are loomimg larger as possible suspects, and my twice/thrice-a-week fish consumption looks less likely, since fish has methyl-Hg almost exclusively.)
I have now found a toxicologist who'll take charge of my case - a team from the Swiss equivalent of OSHA (since most cases like mine happen at the workplace). So with luck things should start moving along more quickly now.
The key thing, from what I've read, is localizing exposure and (if necessary) stopping it ASAP. Since my blood Hg is high and the blood-Hg elimination half-life is very short, it seems likely that my exposure is on-going.
Just one thing puzzled me in your reply: I though DMSA was considerably less dangerous and far less ridden with side-effects than penicillamine, in contrast to what you said. But maybe it was a typo?
Chemical Exposure. I'm glad someone is willing to research possible mercury poisoning. Perhaps it has not become politically incorrect. I don't have to worry about mercury fillings because I have had nearly all my teeth capped or have had bridges....all at once.
Most doctors I have met in Florida do not like to discuss chemical exposure.
Their forte is in treating symptoms, not cause. And that is if they are willing to acknowledge there are symptoms. Unfortunately, sometimes if the cause is not consideremeans not treating symptoms, as well. It is my experience that if doctors think there may be toxins involved (particularly toxins that are politically incorrect in the med field), then they refuse to acknowlege symptoms. Without clinical symptoms, they cannot treat or diagnose based only on lab tests. It is the circular logic with which I have become well familiar. I don't bother with complaining anymore, because it appears that it is accepted medical practice to ignore women (or men, probably) who represent a potential threat to corporate (and doctors') profits.
My father died of mesothelioma (asbestos cancer) but that evidently did not affect doctors' pockets, because the oncologists never treated him as doctors have me now. In fact, a very experienced surgeon choked up when I called immediately after his surgery. My father lived 5 months after diagnosis.
My cousin, with whom I went to engineering school, died at 36 from a rare lung cancer that some think may be attributable to her work at Rocky Flats nuclear plant, which was later found to be badly contaminated. She left two little girls motherless. She had worked hard to make a life for her and her daughters. We both were single mothers returning to college-she was president of the engineering honor society (in mechanical) and I made honors in electrical engineering. However, none of that matters now. She is dead and I cannot work.
Sorry if that offends some, but I've grown very cynical.
I have had high ANA consistently (1:320), elevated anti-SSA antibodies (130-186),
anti-Smith antibodies (115), livido riticularis (observed by a doctor), raynaud's (observed by a doctor) and I have swelling and pain in my ankles, pain in my elbows, arms and hands, and a long-running temp (off and on) of about 100 degrees. The good doc gave me a shot of cortizone in what he called 'tennis elbow' (tendonitis) and was patently condescending. When he stated I have no clinical symptoms so he can't rely on lab tests, I just stared at him. I had given him a host of symptoms. He didn't want to look.
Then there are the neurological problems. I have carpel tunnel, peripheral neuropathy (with no known cause since doctors won't look for one). I have had vertigo and numbness (on the entire right side of my body in 1991, but that all disappeared except numbness in my fingers). The last time I had vertigo was in my last law school final. I was stumbling, and the room swam. I sat for the exam anyway, and got through it but could not drive home for several hours.
I also have had a brain and c-spine MRI showing lesions, and a spinal tap with elevated IgG index and oligoclonal banding.
I am not on any medication now. I've been diagnosed with MS, but cannot drive the two hours to have meds monitored. So I have Avonex in my fridge which has been there for 3 weeks. I am going to toss it.
Oh - then there was Dr. Salvati, right here at the Cleveland Clinic. He has an office near me but won't see me. Two weeks after surgery, I missed his appointment (my very first with him) and he would not make another appointment because I was a no show. I explained that my short term memory was very bad, and I had not expected that or known it would be that way before surgery. Didn't matter. That to me, says that he (1) is arrogant and totally unfeeling or (2) incompetent because he does not realize that short term memory loss is both a function of anesthesia and could be some of the problems I've been experiencing. When told he would not see a 'no show', regardless of circumstance, I was 'harsh'. Recognizing that his staff may have had a point (I lost my temper and can become very sarcastic), I called back to apologize and the staff started an argument with me. Amazing. I called back today - my curiosity gets me into trouble sometimes - and asked why. Now the story that they remember is that it 'wasn't just missing an appointment' but that I wanted to know if silicone toxins could cause MS? This is a good reason to refuse to see a patient.
I tend to believe my short term memory was anesthesia related, because my memory has improved significantly. I no longer am calling my mother in law twice to thank her for flowers because I forgot I called her the day before. Interesting that she, a retired secretary, understands the short term memory problem but a neurologist does not.
I'm very furious at the medical profession here. I don't mention the toxins in my body because then they treat me like I am an idiot and a liar.
My opinion of the medical profession has truly hit the basement. Never in a million years would I have believed the profession could sink so low. I don't trust any doctor and look up every doctor with the state medical board. The last neurologist I had (out of state, when my first attempt at surgery was aborted due to liver enzymes of 550/590 AST/ALT), had me (and his other patients) wait for 6 hours, telling us to 'get lunch' and wait. I saw him at 5:30 for 20 minutes. He charged $750. When I asked for med records to be sent to my FL neurologist (unfortunately 2 hours away from me), I was told "doctor's policy" was to charge $80 regardless of length. So I had my Fl neurologist fax a request to him, with a written release. The Atlanta doctor's office manager (and mother-in-law) called the neurologist to say "doctor's policy" was to withhold medical records until the bill was paid in full.
This is illegal in Florida. It is also illegal in Georgia. I got the records, because another office staff was so upset (he knew the policies were illegal and he bucked the 'policy'). Regardless, I am considering filing a complaint with the medical board. I think of the problems people have who go to a neurologist, some far worse than mine, and it is inconceivable to me that doctor gets away with this, or would be so unethical as to even try it. It is harmful to the patient.
I wonder if I will ever be able to work, and use the law degree that I worked like a dog to get. Before that, I worked as an electrical engineer, for 15 years.
I'm not stupid. I resent being treated that way. I simply have resigned myself to not going to doctors because (1) they do nothing and (2) I don't know if I can be civil anymore to them. My nerves are frayed.
No, forget telling a doctor about toxins in your body. I have silicone gel throughout my system now, which has 7 or 8 neurotoxins, freon, tin & possibly platinum (I have tested positive for toxic levels of tin). But what I hear from the medical community is the most bizarre logic I've ever seen. "a lack of evidence of a correlation" is translated to "no correlation". The "lack of evidence" was reported by two studies (Mayo and Harvard) both of whom were funded by DOW (maker of implants) who later sued its insurance carrier for not paying for these 'litigation expenses'. Wow.
Oh, and Mayo was also a defendant in the lawsuit. There are many other 'irregularities' in the studies, but I won't go into them.
I probably have more of a math background than the neurologist who so condescendingly told me "just because A exists and B exists does not mean A caused B." Well no kidding. It doesn't mean it doesn't either, especially when defendant C funded the research. Regardless of the cause, I am still ill.
A woman I know, a lawyer with 20 years in criminal defense law, is now dying as a result of doctors' refusal to consider toxins - or at least toxins from which their peers gain financial profit.
Well said Molly Jean... I couldn't have said it better. I too am in the same boat you are in and I cannot tell you how angry I am at a medical system that continues to fail me and numerous other women in the same situation.
I was a healthy woman until I got silicone implants in 1976. In 1982, the company I worked for bankrupted and I had a chance at fulfilling a lifelong dream of going to school to become an RN. My husband, a teaching biologist, and I had planned to team up for the Peace Corps at retirement... I was forced to drop out of school 2 courses shy of finishing my degree... Why??? Because the very cognitive problems you mentioned above kept me from being able to remember most of what I was reading. I spent two years studying furiously going over and over and over material that just would not stick and wondering what was wrong that it wouldn't. By this time, other strange symptoms had also begun to appear-still no one suspected a connection to implants.
I have been ill now since 1992, at which time the implants were removed and found to be leaking and ruptured. The treatment I have received by some of the physicians whom I have asked for help (and, by the way, PAID) is despicable. Arrogance, denial of problems, dismissive attitudes, refusal to help or become involved in my care... These are the professionals I looked up to and dreamed of working with???
I suffer from burning pain due to Peripheral Neuropathy, muscle and joint pain, Mixed Connective Tissue Disease, chronic fatigue, cognitive difficulties, heavy hair loss and a host of other symptoms, many of which are neurological... I have vasculitis and have already had one aneurysm. There is not one day that goes by where I feel good. I am in some doctor's office constantly for one problem after another. My husband works 3 jobs in order to keep us going and pay for my expensive medical bills.
I am outraged at the medical community for refusing to consider that the toxic contents of leaking implants could even POSSIBLY be responsible for the health problems thousands of us are experiencing and for their lack of concern over these women who are obviously ill. Somehow, physicians seem to simply dismiss the fact that silicone injections that were given to women in Japan many years back, made them sick in the same manner. Well, why do they think that leaking or ruptured silicone implants should be any different??? Same material, different delivery system...
How long can those of you who, "vowed to do no harm" and those of you who should be speaking out on this issue, continue looking the other direction???
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