willingtocope

Is there a doctor in the house?

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There is a VERY long list that would cause fever and headache. Since it went away, and assuming it doesn't come back frequently, we'll stick with the most common and obvious.

Fever is the hallmark of infection. (Words to live by)

You most likely caught a bug. If it happens again soon we'll worry more. Try not to let the great medical mysteries in your life make you freak out about the common stuff!

Aging and medications and the fact you can't get around too easily is going to take a toll on your immune system, so really even if you think you get these more often than some other people, that's probably true or soon going to be. Keep good nutrition, stay active, and stay involved in social activities as warranted. I'm guessing you probably already take a good daily vitamin.

Other things to note if this happens:

Breathing rate increase

Faster or slower heart beat

We would also look at deep tendon reflexes.

These things help rule out acid-base disorders or electrolyte imbalances such as potassium in particular, phosphate, calcium and more.

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Understood. Its difficult not to assocate all the little aches and pains and fevers with one big problem. But here's the thing.

This at least the fourth episode just like this that's happened in the two years we've been in the middle of Iowa. The first two, I chalked up to my PCP trying crestor instead of pravachol...reaction was within two days, so it seemed related. Next one was here in our new house...no relation to anything. I actually collasped getting out of bed. Slept on the floor for about 3 hours...got up, feeling normal. All have been the same...no pain, no nausea, just general overall weakness with a low grade fever. Within 3 to 10 hours...its gone.

Breathing, heart rate, and even blood pressure normal (DW has an at home meter).

I'm seeing the PCP monday morning. I'm going to ask for a referral to someone other than a neurologist. Toxicologist? Endocrynologist? Witch doctor?

I do have problems with stomach acid. Just a couple of months ago, PCP suggested an OTC acid reducer, which I take at bedtime. Once a week or so, I still wind up taking a tums. But, even if it something like I've got an A. Pryoli (sp?) infection, and I have an acid reflux episode...I get an immediate reaction, my fever goes up, and within a couple of hours my body fights it off? That doesn't make sense...

(Deep tendon reflexes are "brisk"...as noted by the last four neuro people).

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yeah, no H. Pylori would stick around for a while. Infection is viral as well as bacterial which is why I suggest the bug or day-flu.

Any doc that will order some lab work will be fine. They'll basically take blood and check for anemia and content of electrolytes and then your white blood cell count and variety, and some of this will stick around a few days too as a lingering trace so you may get some answers.

Then it's on to gland markers, your thyroid in particular and measure those hormones.

Do you take your meds at night with the tums or do you separate by 12 hours? The tums not only will increase calcium levels (not always good) but will also tend to reduce the amount of drug that is absorbed intestinally effectively lowering all your doses.

More serious answers that also fit would be some sort of organ failure or compromise, usually kidney or liver, any pressure on the brain or meningial related disorders, and cancer also looms as worst case generally.

It might be helpful to list your meds again what you're actually taking now. I've seen a lot that you've been on or off but not really sure what the current mix is. Drugs.com has a good interaction checker for the public as well, and I have some better tools that are pay-for-service provided by the school.

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Current meds: 1mg Clonezapam twice daily (essential tremor and mild dystonia), mim dose alpha blocker (enlarged prostate (generic, starts with ter...)) twice daily, then at night, before bed, 350mg aspirin, Theragran-M Premier High Potency, OTC acid reducer. Tums usually within an hour or two of going to bed.

This switch off / switch on stuff just doesn't compute. Today, I'm feeling fine. Even walking a little better than normal. Putting up shelves in my computer room here.

For some weird reason...if I count my steps in my head, I can usually walk a little better. I'm concentrating on counting...not walking. Its like if you want to see a dim star at night, its best to look a little away from it. Your perpriheral (sp?) vision is more light sensitive than looking straight on. Same thing with essential tremor...if you want to pick up a full glass, its best not to concentrate on holding it still. Dystonia...to stop the head wobble, put your finger on your cheek. Its like you let a lower portion of your brain control it.

Anyway...counting steps...I can usually do the first 25 (with my walker) at a more or less normal pace, heel and toe...then boom...my left leg starts scooting along the floor, it gets my attention and then my right leg does the same thing. Pyschosomatic?

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You don't happen to drink a lot of grapefruit juice do you?

You have a really good attitude about the psychosomatic possibility, almost too good which tells me it's unlikely.

We generally leave that off the table for a few reasons:

1) That diagnosis never did a patient or doctor any good, we have no idea really how it works or how to stop it. You could look into Dr. Sarnis' work maybe if interested. Once we allow ourselves to think it's in your mind, we're likely to miss something down the road, so it's not a good idea.

2) It's a zero-sum game, if you can make yourself sick when you're not, you can also make yourself feel better when you're genuinely sick, so the counting thing could work either way. Attitude is everything, so don't discount it in any sense. Thinking about something else works for any kind of exertion anyway, even bench pressing or curling you can get a couple more reps out by not focusing on the pain.

3) It's theorized that even if the root is psychosomatic, the effect physiologically is real, and we would be likely to detect the changes in the body anyway and treat it as any other idiopathic cause despite yourself.

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Nope...no grapefruit juice. Occasionaly prune juice...like I said, I can count on constipation once a week or so.

Last visit to neurologist, when she was running 400 volts through me, I mentioned that if I stretched in bed at night, I could count on putting a cramp in something. She suggested I have a glass of tonic water before bed, so I have been through a liter of that in the last week. No real benefit I can see, and the stuff tastes really bad.

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She suggested I have a glass of tonic water before bed, so I have been through a liter of that in the last week. No real benefit I can see, and the stuff tastes really bad.

DH has leg cramps at night and use to take quinine pills when it was an over the counter med - worked great. DH asked Dr for prescription and she told him to drink tonic water - which does not work for him.

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Tums usually within an hour or two of going to bed.

WTC - you have quite a bit going on in your life and my medical knowledge is null; however, when you mentioned Tums - bells and whistles went off.

DH use to eat Tums constantly. For some reason the Tums would absorb the acid; however, as time went by, his stomach was creating more acid - thus more Tums.

The Hawaiians to use to serve papaya at every meal to prevent digestive problems.

He replaced his TUMS with papaya tablets (started off eating 4-6 tablets after evening meal and now he only takes them about once a week).

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Heartburn has been puzzling. It only happens when I lay down at night. Usually, if I eat some cheese...2-4 oz...right before bed, it doesn't happen.

When I mentioned that to my PCP, he suggested taking that OTC acid reducer. At first, it helped...I went the first 3-4 weeks without feeling any heartburn...now, its back. I keep coming back to the possiblities of an H. Pylori infection. I know that particular bacteria can do nasty things to your stomach...I can't find any reference to what happens if it gets loose in your bloodstream.

Got an appointment with PCP tommorrow. We'll see if he has any new ideas.

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A slice of bread is more absorptive.

But the laying down thing is very common. It's mechanical. The valves of the stomach rely on suction as well as force to maintain a good seal, and they tend to relax when you're horizontal. Like water, acid seeks it's own level so you get some back up in the esophagus and/or upper intestine.

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So, appointment with our PCP yesterday. Blood test for diabetes was negative. Did a urine test. Negative. Read over the reports from the two female neurologists in Iowa City. Nothing of significance noted...except they tend to agree that I'm showing signs of spastic paraplexia...slight neuropathy via EMG...brisk reflexes...slight dystonia...essential tremor No real diagnosis.

So...Friday...I got me an appointment with a chiropractor. Lets see what twisting me into a pretzel accomplishes...

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Lots of blood tests over the last 4-6 months. Everythiing from standard electrolytes to HTLV. Diabetes was just the most recent. I think, because of the episode I had last Friday...weak, slight fever, etc...the PCP was looking for a bladder infection.

Last MRI was probably July / August. They did a complete head to base of spine over a period of 4 months or so (insurance only pays for, what, about 6 inches at a time). At this point, at least 6 different neurologists / radiologists have looked at them. Slight arthrisis in my next...not else significant.

I've got a CD with the scans on it which I plan on taking to the chiropractor.

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Aw geez, have I come to this...

So, I go see the Chiropractor yesterday. Old doc is away at a seminar, so young doc (his son) did the exam. Sure knows his speil. Fast talker. Decides that while traditional Chiropracty may not help, he feels sure that acumpuncture and detoxification probably would.

First, he trots out an "energy meter" to measure the energy flow in my body. I say, "I just had an EMG...mild neuropathy, but nothing significant". "Yeah", he says, "but this measures a different kind of energy. Lets see what it says".

He calls in his assitant to take down the readings. Hands me a copper bar to hang onto to, and then starts poking me with a probe up one leg and down the other...both hands...looking at the meter...giving readings to his assistant. Shows me the results...difference in the numbers..."these are good, there are some imbalance here and here". Things we need to work on.

He brings out what looks like a small screw driver, but its blade in is on a spring so he can tap it up and down. He goes over about 30-40 accupressure points...sort of looking for whether I junp or not. Finds a couple of places (like the hand where I already mentions I appear to have a little carpal tunnel symptoms) where he says "ah ha". We can work on those, he says. The other end of the device has a magnet on it, he says. When he presses down with that, he can tell from my reaction if the magnetic symmetry of my body needs adjustment.

Then its a "laser accupuncture" device. Two laser beams that he waves over a couple of points. "This should help a bit", he says.

He brought out a "thumper"...hand held massager that he ran up and down my neck (must admit, that felt pretty good). Then an industrial strenght virbrator that he ran up and down my legs (that fell really, really good).

Finished me up with a "detox" foot bath..."pull those heavy metals out of your body". Distilled hot water, some special crystals, and a "Tens" unit pushing high frequency electricity through the water.

About an hour and a half...my insurance paid for all but $89 of it. Two more sessions scheduled next week.

Okay, so I'm a chemist by degree...I know the foot bath is a scam. It don't work that way. The laser accupuncture is also a fraud. There is NO scientific evidence that a laser weak enough to NOT burn your skin will in any way penetrate your skin to even touch an accumpuncture point assuming such things even exist. The little screwdriver thingy did get a rise out of me in some places...and I barely felt it in others. I might be inclined to believe that some nerves may function less well than others...but...the magnetic flow lines are pure BS.

So...here's my delima...do I keep the two appointments next week? If so, I will instruct him that all I want out of him is his thumper, vibrator, and a thorough spinal exam. (I left him a CD that has a copy of all the MRI's and XRays done on my spine over the last year, so I've got to retrieve that at least.)

But, he hit me with so much flat out snake oil, that it makes me wonder if anything he has to offer is worth doing. They gave me a list of what my insurance will cover and what it won't (I'm sure you can guess what fits in the "won't" category).

I'm gonna have to give this some thought...

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My thoughts, if you don't believe it, it ain't gonna work.

I was only signed on for an alignment. The rest honestly I find pretty hilarious!

Those guys really seem to have branched out, and not in a more credible way. Now I see why so much disdain from the rest of the professions.

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Went to the chiropractor appointment yesterday (maily to pick up my MRI CD). I told him that something he did Friday had a minor positive effect. I was walking slightly better sat. and sun. Maybe a 1.1 instead of a 1.0. I told him if we could figure out which of his magic tricks did that, and if my insurance would pay for it, we could continue to do business.

I asked if he looked at my MRIs. He said yes, but didn't see anything significant. He also said that he didn't think I was a candiate for "traditional chiropraty", and my insurance wouldn't pay for anything else.

So...I took my CD and went home.

I guess I wait for the nerve doc in Iowa City to decide which genetic test to run.

What other specialities could I try. GP, Osteopath, Neurologist...no answers. Toxicologist? Endrocronologist? Is Catherine Coleman still around?

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Okay, so neurologist from the U of I calls today. Says she and the first one I saw there have been discussing my case and have agreed that genetic testing would be counterproductive. She says there are so many indicators to test for, and each test is expensive, that she does think it would show anything more than they already suspect.

spastic hereditary paraplegia.

Okay, symptoms fit. No one else in my large and extended family has any symptom I'm aware of, but she says, it may have been recessive and I just got to be the lucky one.

What treatment, I ask. We can only treat the symptoms, she says. Have you ever taken Baclofen. No, says I...let give it a try. She going to phone in a script.

I look it up online. It is an agonist for GABA receptors. One of the things that statins are suspected of blocking. Hmmmm. Statin induced myopathy.

I'll pick up the script tommorrow. We'll see what happens.

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Well at least you have a name now. It must be a rare enough diagnosis that we've not covered it beyond the context of a symptom (of MS and others). Did you look it up and did you like the fit? If we cover it more in this last year I'll get back to you.

Baclofen and clonazepam aren't a far cry from each other, both work the GABA system, and if you're going to continue with both you can expect to be VERY drowsy as the effects are additive. You may actually have to swear off alcohol for real instead of as a strong suggestion.

While those two drugs essentially do the same thing, clonazepam seems to have a slight edge with cerebral sources of spasticity and baclofen is favored for spinal sources. Overall differences are marginal. This result was from a very small study though, only 25 patients or so.

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I'm not really happy with the diagnosis. The major symptom is leg weakness brought about by inappropriate muscle contraction. Okay, maybe. I think the best way to describe my major symptom is...when I walk, I feel like I have small children sitting on each foot and wrappred around my lower leg. No pain, just difficult to move my feet.

I did find an online reference to a doctor at Univ. of Michagan who is studing HSP...and, if I read the blurb correctly, does genetic testing free of charge. I'll get in touch with him, and see if I at least have the genetic markers...

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Well, it turns out that the guy I found online that's running a study on spastic hereditary paraplegia is the same guy that my nerve doc from Ohio wants me to see in Michigan. Since its unlikely I can get there this year, I've tried to contact him by eMail to see if there are tests he can recommend the docs at U of I run.

So far, Baclofen hasn't had any positive effects. The literature says it can take up to two weeks for an effect to manifest, and its only been about 8 days. The literature also says the dosage may have to be increased before it can get by the blood / brain barrier. I'll keep it going for awhile...the literature says it may be that they'll have to put in a tube directly into my spinal cord with a Baclofen pump. Ooookayyyy.

Interestingly, I've been re-reading the stuff at www.spacedoc.net . That's a web site by an ex astronaut who's also an MD. He had a bad experience with Lipitor...and has done a bunch of research into statin side effects. He points out that there are people who seem to be genetically disposed towards having negative reactions to statins. I'm trying to cross reference the "markers" he talks about to the "markers" that www.sp-foundations.com references. Wouldn't that be a kick in the head...

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I'm not really happy with the diagnosis. The major symptom is leg weakness brought about by inappropriate muscle contraction. Okay, maybe. I think the best way to describe my major symptom is...when I walk, I feel like I have small children sitting on each foot and wrappred around my lower leg. No pain, just difficult to move my feet.

I did find an online reference to a doctor at Univ. of Michagan who is studing HSP...and, if I read the blurb correctly, does genetic testing free of charge. I'll get in touch with him, and see if I at least have the genetic markers...

is it dr fink?

i found this link- not sure if you saw it yet

http://www.med.umich.edu/hsp/

there's a discussion/support group too

http://www.med.umich.edu/hsp/support.htm

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