willingtocope

Is there a doctor in the house?

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Willing, I just found this, and gosh, I can't imagine what you're going through. It definitely seems like an ongoing episode of House here!!!

Have they done a PET scan at all? Muscle biopsy?

The Klonopin worked but you may have had some side effects. Has your doctor looked into changing you onto another benzo, such as Ativan or Xanax? Or heck, even Valium? Valium is good because it does help with a lot of those instances.

Have they looked into any muscarinic receptor problems?

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No pet scan or biopsy as yet. Nothing about muscarinic receptor problems.

I have had a period of about a year where I was off the Klonupin. No real change, except I was degrading slightly. I put it down to no exercise. I started up again when I got a job...it does help with the essential tremor.

I guess my plan at the moment is to take the new med (acetazolimide) until I see the Des Moines guy in late July...I've only been doing it for 5 days now, but, no improvement I can see at this point. When I see him in July, I'll see if his staff can get me to the Mayo. (Its closer than the guy I know in Ohio). We'll see where that leads.

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Weird that they're giving you Diamox...I guess for the hypertension? Be prepared to pee. A lot.

http://en.wikipedia.org/wiki/Diamox

ETA: WTC, I was just going through my PHarmacology notes - we just had a test on this stuff last week and I knew there was something about Diamox.

Do NOT take this with Aspirin. It will cause major acidosis and throw you in the hospital big time. It's usually only used for glaucoma, which is why I said it was weird, there's so many other better meds with a higher therapeutic index.

Just be careful, because Diamox decreases the bodies ability to reabsorb Bicarbonate, which is why you can't take it with aspirin (you need Bicarb to coat the stomach to be able to tolerate aspirin).

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Weird that they're giving you Diamox...I guess for the hypertension? Be prepared to pee. A lot. .
Yeah, I'm assuming its the "benign intracranial hypertension" (in other words, fluid on the brain) that he's treating (before having any real evidence that's what I've got). I do have constant sinus pressure (Nasonex helps that), and, my eye doctor has been watching Glaucoma pressure for years (not over the line, but high)...so, I've of the opinion he could be on the right track. It may indeed wind up being "normal pressure encelopathy", but, again, no real evidence as yet...just symptoms that "could be".

Anyway, thanks for the heads-up on the aspirin. Explains yesterday. Heartburn that would have set Rome on fire again. I normally wake up in the morning with pain in my right hip and knee. It usually goes away when I sit up for awhile. Occassionaly, I take either Aleve or aspirin to help it along. Yesterday was aspirin. I won't do that again...

So far...after 5-1/2 days...the Diamox seems un-helpful. I've got the side-effects (the coke I had at dinner last nite tasted more like selzter water) and then the heartburn yesterday. I would have expected to see something positive by know, and, if anything, legs work even worse.

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aloha and CDL:

I've been reading about b12 (Dr. Internet is marvelous...if he just made actual in person house calls) and I've been wondering how to get me some. If I read correctly, its not real effective in pill form...a shot would be better. I plan on asking the guy in Des Moines for one when I see him towards the end of the month.

My grandmother received B12 shots from her internist every two weeks from about age 70 to her death at 100.5. She - and the rest of the family - credited those injections for her REMARKABLE stamina and good health. She was taking no prescription medications and had no health problems other than poor eye sight when she died. (She ended up breaking a hip and getting an infection...surgery probably could have saved her...but it's not what she wanted). Now obviously there are some good genetics there -- but I do think the B12 gave her the pep and stamina she needed to keep going those last few years - keeping up a small condo (living by herself) and getting out with friends at least 3 days a week!

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Glad I could help a bit, WTC. Seriously, wikipedia is great for looking for drug interactions and contraindications. I used it a lot for my pharmacology class.

I almost wonder if they should do a drug holiday with you and then introduce other drugs and see if they work?

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The only drugs I'm taking right now are Clonezapan (1mg a day), and Acetazolimide (250mg / twice a day). The acetazolimide is recent...like I've been taking it 5 days now. I do seem to have all the side effect, but I've yet to see any benefit. I'll be talking with the nerve guy today about that.

I tried quitting the Clonezapan a last month. The withdrawal is a real annoyance.

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I take .5mg of Klonopin if I need it, but I can see how the withdrawals are hard if you have been taking them.

Let me know what they put you on - honestly, I think that Diamox (its shorter to type than Acetazolamide LOL) is really extreme unless NOTHING else is working.

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University of Iowa Hospitals

http://www.uihealthcare.com/

They have a good Neuroscience department.

Hey, shado! There you go!

Went to the Des Moines guy this morning. After 9 250mg doses of Diamox, I couldn't stand the heart burn anymore. It really doesn't play nice with aspirin, and I take 350mg of that daily for my heart. Anyway, called his office friday (he told me to stop taking the diamox), and they got me in this morning. We spent about an hour together.

Bottom line, he hasn't got a clue. He said, "no pill, no operation, no therapy I've got will help this. You need another opinion. Mayo or U of I?"

I chose U of I. They're only about an hour away. I go on 7/24. In the meantime, he gave me a script to go see the Physical Therapist at our local hospital and get fitted for a walker. Woo hoo!

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Finally! LOL. I went to a Neurologist for head aches and he told me i was having head aches because i was over weight. So i told him that I thought that was a cop out, because skinny people get head aches also. I continued to inform him and i would not be coming back to his office and i would be contacting my Insurance Company to inform them, that the charges for this visit should not be paid because, he did not provide me with any medical care and I proceeded to take my UNHAPPY Large A$$ out of his office in a whirlwind. Doctors are not inflatable, and they do not know everything. You have to stand up for your self because no one else will! So get your bum to the UI hospital and get this figured out man! Prayers are with you!

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So I got me a walker. Wheels...brakes...seat...basket under the seat...one of them big squeeze bulb ''ahhhooogaa" horns on it. Sweet.

Its actually kind of interesting. I can actually walk with the thing. Since my brain doesn't have to concentrate so much on keeping me balanced, I can actually pay attention to lifting my feet off the ground. Strange.

But, just to add to the pile of symptoms...I went to the optometrist yesterday. Its been about two years. I don't even wear my glasses anymore, so I was expecting little change. Turns out...big change. Cataracts in both eyes. They weren't there two years ago. Not terrible at this point, he says I'm near sighted in both eyes now, and he's prescribed some new lenses. Looks like I'll have them both operated on in 6 to 12 months.

Question is...am I just getting older...or is this somehow related to my other problems. I think not, but I do find some references on the internet to statins and cataracts. The study said that there is some slight evidence that taking statins reduces the chances of developing cataracts. I'm not quite sure how that would work...

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Hey WTC, I had surgery on tues. and now I'm barely walking around my house with crutches like a 1000 y.o. man and I feel like I've been run over by a hundred trucks.

For some reason I thought of you, and I was just wondering how everything is going with you.

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I don't know how much help this will be for ya willingtocope but here's what happened to me:

8 years ago I went to my doc for joint pain through out my body. He told me I have fibromyalgia and prescribed a heavy does of advil and a anti-depressant called pamelor. It worked for the first week, went back and he just upped the anti-depressant dose.

I started having similar symptoms to yours. Face issues with muscle control, very tired legs, fatigue, arthritis like pain, popping joints...I also had...spells of tunnel vision only relieved by muscle relaxers, high eye pressures, spells of disorientation and confusion, memory loss, unexplained weight gain, acne, hair loss, ect. I kept taking the med cause that what the doc said I should do.

Everything kept coming back fine on my blood work, cat scans, ect. Saw a neurologist, saw endocrinologist...the works.

A month ago my blood sugar began rising rapidly. My kidney's started to shut down. I stopped the meds I was on and in 3 days the symptoms all cleared.

Discovered it was the anti-depressant causing all the problems. I noticed you take 2 different meds for epilepsy. Are you epileptic or are they giving you the meds to treat a different disorder? It could very well be med related.

I hope you feel better soon.

j::ambulance::::daisy::

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CDL: Thanks for asking! No real change in symptoms. Maybe slightly worse, but its difficult to distingquish between flat out crappy and really crappy. Nothing I've tried on my own seems to help.

Admin: Yep, two more weeks and I get to see the people at U of I. Somehow, I just can't conince myself that I'm going to walk in the door and they'll say "hey, you know what? You've got XYZ disease. Here's a pill. You'll feel better tommorrow". Another opinion can't hurt, I guess.

The walker sure helps at work. Getting to the other side of the building is still a chore, but since I don't have to concentrate on not falling over, I can put all my energy into making my legs move.

...He told me I have fibromyalgia...

I Discovered it was the anti-depressant causing all the problems. I noticed you take 2 different meds for epilepsy. Are you epileptic or are they giving you the meds to treat a different disorder? It could very well be med related.

I've been wondering about both of those. Some of my symptoms do fit fibromyalgia. I'm not in constant pain, but things are certainly much worse in the morning and get gradually a little better as the day goes on. Excersise doesn't help. If I move the wrong way, I can put a cramp in just about any muscle in my body. Every had a cramp in your eyebrows?

The only epilepsy related drug I'm currently taking is Clonezapam. It was prescribed about 6-7 years ago by a nerve guy in Ohio for essential tremor and mild dystonia. I stopped the Diamox after 9 doses because of the severe heartburn (that was just an experiment anyway...didn't have any good effect, but I got all the side effects).

I'm only taking 1mg Clonezapam at bedtime. I've tried quitting (and I'll talk that over again with the folks a UofI), but the withdrawal is a real pain.

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I've been wondering about both of those. Some of my symptoms do fit fibromyalgia. I'm not in constant pain, but things are certainly much worse in the morning and get gradually a little better as the day goes on. Excersise doesn't help. If I move the wrong way, I can put a cramp in just about any muscle in my body. Every had a cramp in your eyebrows?

The only epilepsy related drug I'm currently taking is Clonezapam. It was prescribed about 6-7 years ago by a nerve guy in Ohio for essential tremor and mild dystonia. I stopped the Diamox after 9 doses because of the severe heartburn (that was just an experiment anyway...didn't have any good effect, but I got all the side effects).

I'm only taking 1mg Clonezapam at bedtime. I've tried quitting (and I'll talk that over again with the folks a UofI), but the withdrawal is a real pain.

Cope,

Yes, I have had cramps in my eyebrows...even behind the eyes. It sounds muscular but muscular can be deceiving. I have had every muscle in my body ache at the same time. It was always worse in the morning with me too. I had joints popping; even down my spine to the point where sneezing hurt. I have had chest pain coming from the tendons that connect the tissue to the breastbone. It hurt just to breathe at times. I have had my heart practically beat out of my chest. My legs used to twitch when laying down. The side of my jaw wouldn't contract when I tried to smile. I also developed TMJ. It got to the point of barely being able to walk and the thought of getting a cane had crossed my mind. I was sleeping much of the time.

When the doc diagnosed me with fibro...it was six weeks after having a bad case of strep throat. But some of the symptoms, like the headaches were there before the fibro diagnosis.

When I stopped all but my B/P medication, I also stopped the OTC...like advil. Advil...can cause some serious side effects in some people. I can take a little tylenol now but not much.

There is a withdrawal for the pamelor as well. There was pain, all over my body--worse than the fibro pain. Extreme mood swings, cravings to take the drug, sleeplessness. I threw the bottle of pills out to prevent myself from taking them. 40 mg was not a large dose according to the docs. I went through detox from that drug...it took a week to do it.

This was my trick:

I helped speed up the detox by taking a combination of herbal supplements. I took a specific formula made by Watkins Inc. But...the essential ingrediants for detox is...milk thistle, dandelion root, ginseng. I have found all those in local stores...though I had tp travel three towns over to get the dandelion root.

After I did the Watkins detox (Watkins Inner Cleanse/Restore) for three days (boy did I have some horrible smelling BM's...beware! You will stink up the bathroom.)...I took the milk thistle and ginseng combo for the rest of the week. I found the dandelion in the detox blend had already done it's job and didn't need anymore.

Milk Thistle cleanse out your liver.

Ginseng balances your blood sugar and gives you energy

dandelion root cleanse out your kidneys and liver...will also make you pee a lot.

the 3 are a potent combo and will help your body recover during withdrawal.

my suggestion is when your try to go off the prescriptions, take the combo I just described. You will need the max does to start and then cut it back as you see fit.

(Now if I could only get myself off coffee):mrgreen:

hope you get better soon. :smile:

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Okay...for lack of any specific guidance...I have been experimenting to see if Clonezapam has anything to do with this. Back in May, I doubled my normal dose...1mg / twice a day. No effect. So, I began withdrawing it...cut it back to 1mg a day, then 1 mg every other day, then 1/2mg every other day. No effect...except that the essential tremor is back, and I'm getting some really weird muscle cramps and having difficult sleeping. My last 1/2 mg would have been tonight.

And then, in the meantime, road trip today to Iowa City to visit a neurologist there. She also did the "pull my finger" routine, but threw in some new wrinkles I hadn't seen before. Discovered I have mild scholeosis (sp?). Said, in her opinion, current symtoms have nothing to do with essential tremor or cervical dystonia, but did confirm that she saw evidence of both. She also said that if Clonezapam helps with those issues, she'd suggest I get back on it. She said, for my size, I'm taking a very small dose, and if I've been taking it for 8-10 years, chances are I tolerate it very well. So, she wrote me a scipt, and I'm back on the pill. I took a full 1 mg as soon as I got it filled, and actually, I'm feeling a little better. I don't expect that to sold the problem, but, at least I can hold a cup of coffee.

Anyway, she reviewed all the MRIs...and agreed, nothing significant. She reviewed all the blood work, and agreed...nothing. She mentioned some genetic testing, but, said all that would do is perhaps indicate a genetic disposition to certain diseases, but since it fairly expensive and they have no treatment for most of what they might find, she wouldn't recommend it.

So...bottom line. Nothing. No clues. Good news is, in her review, she agrees that there doesn't seem to be anything life threatening...its not structural...no evidence of viral infection...no myelin (sp?) degradation. She also says no evidence, in her mind, of ataxia. Interestingly, she did agree that it could be something "statin induced", and did agree that it may take up to a year for it to correct itself.

Next step? Back in a month or 6 weeks to see a neurology / muscle specialist that will be starting on staff in early august.

Hmmmm... another hurry up and wait.

So...here's the drill...I'm going to cut out all the supplemehnts, and just go with 1 mg /twice a day, an aspirin, and a multivitamin. Probably won't help, but doesn't hurt, and I can save money on the rest of the pills.

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And so the sage continues...

Another road trip to Iowa City...to see the new neuromuslar specialist. Didn't start out well. Wife and I go into the exam room...and wait about 15 minutes. DW does not wait well. In walks this guy, says "Hi, I'm Dr. GodsGiftToWomenEverywhere. I tried to read through all this paperwork but got bored. Tell me what it says". DW starts boiling (we've been married a long, long time...I know that look). Before she could pick up a chair and wack him with it, I told him the story.

"Legs don't work. Seen lots of doctors. They've all labeled the symptoms, but nobody can do anything to fix it".

"Hmmm", says he, and proceed to do all the "pull my finger" crap. Spends about 5 miuntes with me. Then says, "Okay, I'll go get the boss. She's likes to have people put on these gowns...here...we'll be back" And he leaves.

DW goes off as soon as he's out of the room. Called him lots of things...none of which had anything to do with doctoring. I get into the gown.

Ten minutes.

Boss comes in. She's professional, polite...and sympathetic. She says she has read my history and has some thoughts...but she still does the examination. She sits and talks for awhile. Family history. How long has this been going on. Full tilt. (Dr. GodsGiftToWomenEverywhere, who we now understand is just one of her interns/students stands quitely in the corner).

She says...okay...we'll do some blood work. I'll get a copy of the MRIs. And we'll get you back in two weeks for some conductivety tests. The blood test she orders are B12 levels, Copper, and HTLV. B12 was looked at before by our primary care guy and he wasn't concerned. Copper (which I understand can exhibit similar symptoms) is a new thought, and the HTLV thing is kind of far fetched but, still worth looking at.

She says when you come back, I'll have looked everything over, we'll do the EMG, and we'll get some answers.

Hmmm. Okay then. We'll see what happens.

(Alll I realy have to worry about is DW decking Dr. GodsGiftToWomenEverywhere. I figure he's really headed into the Nip/Tuck business).

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Damn, I hate this.

I've been researching "copper deficiency" on the internet. Symptoms fit.

http://en.wikipedia.org/wiki/Copper_deficiency particularly

Affected persons develop progressive spasticity, ataxia, and a neuropathy.

So, where would that come from.

This is a stretch, I know, but the article goes on to say

Zinc competes with copper for absorption by the gut

In 1970 or so, I saw a neurologist for "essential tremor" (before Clonezapam) who suggested I take a mutivitamin named Optilet M whose formula contained Zinc. He said, in his experience, zinc supplements helped control essetial tremor. He was right...it did seem to help. I tooK Optilet M right up until 2005, when we moved from Ohio. The local pharmacy would special order them for me.

We get to Iowa, no money for drugs anyway, so I don't take anything until like June 2006. I go to Walgreens...they say they don't carry them and can't get them, so they suggest Theragram M. Same zinc. Okay. I've been doing Theragram M for about two years. Today, I look at the formulation. 100% RDA of Zinc. No copper.

Did Optilet M have copper? Don't know. Can't find the info anywhere.

Could it be that simple? I've been taking a vitamin for one problem, and its been causing another?

Damn.

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(Alll I realy have to worry about is DW decking Dr. GodsGiftToWomenEverywhere. I figure he's really headed into the Nip/Tuck business).

Cracked me up! :lol:

Could it be that simple? I've been taking a vitamin for one problem, and its been causing another?

I'm no doctor by far, but that sounds completely logical and actually common these days anyways. You know by the time the latest "drug" has made its rounds they come out with a new study saying it could cause something else and it is recalled. That's all you ever hear on the news. It's actually very scary to not be able to have faith in anything you take.

Anyhow, too much of anything-even vitaimins can be dangerous.

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