willingtocope

Is there a doctor in the house?

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Yeah, so I know, asking for medical advice on the internet (particularly on a credit board) is not the brightest thing to do. But, I'm kinda running out of ideas here, so I'm open to suggestion.

Male, 62, history of mild to severe essential tremor, and mild dystonia on left side of face and neck. Tremor and dystonia controlled with Klonupin, 1mg twice daily. Mild heart attack in 2000. Triple bypass. Excercised regularly 3 times a week until August 2005. Over time, began to develope weakness in right leg. Leg began to drag during excerise. Leg press 600 lbs with left leg, 200 lbs with right.

Circumstances made it impossible to continue going to gym. Essentially sedentary from August 2005 to until May 2006. Began light excersise in May 2006, but difficulty walking. Visited neurollogist. Tremor and dystonia NOT remarkable. Conductivety tests show nothing remarkable for either leg. Basically, neurologist said "come back when you got some symtoms we can idenitify".

Tried to continue walking (work has an indoor track). Began using a cane full time in November 2006. Right leg drags, left leg tires easily. Joined gym again in May 2007. 3 times per week. No improvement.

Had a cardiac stress test December 2006. No problems. Actually, ejection fraction shows improvement over 2003 test.

Had differential BP measurement on arms and legs in June 2007. Ratio 1.3. No pulmanary artery disease.

Had MRI of lower spine in July 2007. Nothing remarkable.

Muscle weakness...primarily in legs...comes and goes. On a scale of 1 to 10, good days are a 4...bad days are a 2. (I can still move, but only with great effort).

Any suggestions? I've got an appointment with the neurologist in a couple weeks, but I'm not confident he'll have any new ideas.

(I'll even take Beri-Beri. The symptoms are right, but it doesn't respond to 200mg Thiamine a day).

And, please excuse the spelling...I can speak medicene, I just can't spell it.

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Basically, neurologist said "come back when you got some symtoms we can idenitify".

first off you need to see a new neurologist for a second opinion

i assume by conductivity test you mean NCV or NCS which is a nerve conduction study? id suggest having an SSEP somatosensory evoked potenital test but from your symptoms a good neurologist would probably have ordered that already

also have you had an MRI of the brain?

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Yep, PAD ruled out. Its my understanding that's what the differential BP with ultrasound was testing.

Yep, MRI of the brain...several actually, last one probably early 2004. They were looking for clues to the dystonia. Nothing remarkable.

Not sure which flavor of nerve conductivety. Stuck needles in various places. Made my muscles twitch. (I also have numbness in my left hand. There was some minor difference in potential down my left arm, but according to the doctor who did the tests, not enough to explain symptoms).

I do agree that the current neuorolist seems clueless...but...if I were 32 instead of 62, the symptoms I've presented to him so far might be more significant. Also, there does seem to be a lot of people around this small town with essential tremor, and maybe even a little dystonia. Its weird, and kind of reasurring in a morbid sort of way to see people who shake worse than I do.

So, I'm thinking I'll give this guy one more shot at me. The weakness in my legs has grown significantly since I last saw him. But, if he has no new ideas, I'll ask him for a referral.

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Yep, MRI of the brain...several actually, last one probably early 2004. They were looking for clues to the dystonia. Nothing remarkable.

yep thats why i was asking too, i would have been suprised if you said they never ordered one

the needles and the shocking they did were actually two tests the needles part was an EMG and the shocking was an NCV those tests were on the nerves in your limbs only, the EMG (needle) part tests the fine nerve fibers in the muscle and the NCV tests the main lower extremity nerves, the SSEP i suggested would test the signal between the brain and the nerves in your legs

honestly if a neurologist said "come back when you got some symtoms we can idenitify" or anything to that effect you should have changed neurologists then, if he could not figure it out he should have referred you to another doctor anyway

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hey willingtocope so sorry that you are going through all the health issues.

Have you considered botox for the dystonia?

Is there any muscle atrophy, fascilulations?

I will pass on to some friends for consultation.

I am not a doctor, but may be you can read up on

eaton lambert

ALS

Myasthenia Gravis

I will post later with their ideas.

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I've always tried to avoid the botox. As I understand it, botox is just a temporary fix...needs to be renewed every 6 months or so. Klonupin seems to control it. No muscle atrophy, fascilulations that I know of.

I'm hoping its not ALS or Myasthenia Gravis. I would assume the neurolist I've been going to would have thought of that. Just today, I did check out his credentials online...he's young, but well known nationally. His practice actually covers most of Iowa.

So far at least there hasn't been any evidence of the "autoimmune" type conditions like "eaton lambert".

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First of all, if a doc says wait until the symptoms get worse, that's a red flag! On to the next doc who might be able to help. In the medical world, it is the squeaky wheel who gets medical care. And also realize, the guy who graduates at the bottom of his class is still called Dr. ....I would be practicng medicine without a license to make any kind of diagnosis. However, there are online sites that you can actually type your symptoms into to give you general clues. Google symptoms. Your symptoms do sound neurological...Stroke, ALS, and Parkinsons come to mind but also it could involve sciatica, or a side effect from meds....statins can cause muscle weakness.

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....statins can cause muscle weakness.
Yes, I thought about that. I've been taking Pravachol since the heart attack and actually stopped for a couple of months early this year. No improvement. The only real change in meds over the last year has been the addition of Zetia.

My family doctor has done all the blood work. Checked for liver damage, etc. Again, nothing remarkable.

(I need to be more clear on something, I think. Last time I saw this neurologist was at least a year ago. At that time, the tremor and dystonia were under control (even without Klonupin...I had stopped taking that on my own, suspecting that might have been the cause) and all I complained of was my right leg was weaker than the left and my left hand was numb. He sent me for the conductivity test, and suggested the spinal MRI. He did the right tests. At the time, my symptoms were just not something to jump up and down about.

Now, I have difficulty walking. I'm going to go see him again on Aug 20. If he doesn't have any other suggestions, I will try another doctor, but, I got to beleive whatever I've got isn't obvious.)

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have you ruled out parkinson's? both my uncle and a good friend had a sudden onset in their 60's.
Pretty sure I don't have parkinson's. From what I understand, there's a pretty distinctive "pill rolling" motion that happens with your hands in parkinson's.

As for CleverCynic's list...yep....that's the possiblities. Problem is that most of them have fairly similiar symptoms, and no real definitive test.

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Have you looked at Mitochondrial Disease? Very rare, but I had a patient with it. She had similar symptoms.

Pill rolling is not the only symptom of Parkinson's and certain people will never have that symptom. Most generally do have a shuffling gait, hunch while ambulating, loss of balance and "heavy feet". Each case is pretty individual though. It's worth checking out in more detail.

And I agree with those above, DEFINITELY go for a second opinion.

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Okay, so Doctor appointment has been changed to Tuesday...

I'm still grasping at straws here. Either I've got some progressive maliase that's worsened over the last two years, or there's something in the environment around here that's causing me some problems. I keep looking for cause and effect (and hoping that whatever connection I make isn't all in my head).

So...environment...when I got off the truck after moving to Iowa, I was maybe an 8. I could walk on a treadmill for 30 minutes at 3 mph, and, it was only the last 5 minutes or so that my right leg began to drag. Six months later, after sitting on my butt looking for work, I was a 5. I could walk about 15 minutes, but carried a cane for stablility.

I started work in May 2006...small town in Iowa, right in the middle of corn and soybeans for 40 miles in any direction. Things kind of went down hill from there. Now, on a "good" day, I'm a 4...stay on my feet for an hour or two, as long as I don't walk very far. On a bad day, I'm a 1...I can walk, but very slowly and very carefully.

So...the question of the day is...anybody know of any pesticides or fertilizers that are legal in Iowa that weren't in Ohio? Anything new in the last 3-4 years?

I noticed today...my DW sprayed a couple flies...I haven't been able to check the can, so I'm not sure with what...I'm having problems keeping my head up at the moment.

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So, I go to the nerve guy this morning. At first, he's all "...what are you doing back? Nothing major wrong with you...live with it."

Nice guy that I am, I didn't punch him...but instead said "family doc sent me for MRI...and sent you the results. Anthing I should be concerned about?". He read the report. It basically said "nothing remarkable".

Hmmm...

"So", he says, "while you're here, lets go the through the examine, and if can't find anything, I'll send you to someone smarter than me."

Okay, he pokes and prods and "touch my finger, touch my nose"...all the standard stuff. Tests the old Babinski...I kick him in the leg. He says, "hmmm". Does the "sit on the table, lift your right leg, lift your left leg"...neither one move more than two, three inches. He says, "last time I saw you just your right leg was weak...what happened?". I said, "exactly, whatever it is, its getting worse."

"Walk down the hall", he says. I grab my cane and shuffle off a few steps. "Come back", he says. I shuffle back. "You can't walk", he says.

"Exactly"

Bottom line...he sent me for blood tests...just about everything in the place, including the "Lyme titrate". And, I go for another MRI in Sept. This time they'll do the thoracic spine, and if that doesn't show anything, they'll do my head.

He says it appears to him that I might have a lesion on my spine, or something similar. (About 25 years ago I did have a Pineal Sinus removed from the base of my spine. As I understand it, I may developed another further up.)

Anyway, back to the sausage machine...but no immediate releif.

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I hate to suggest this since it would be really bad if correct, but have they ruled out Lupus? Muscle and joint weakness is one of the primary symptoms. It's a very hard disease to diagnose because the symptoms vary from person to person. Some people seems to show all the symptoms while others only show one or two.

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I'd be kinda pi$$ed that they keep spacing these appts so far out. What's with that?
My choice. Unless the sky really falls in, we'll be moving next week. Kinda puts things off till mid Sept. Besides, it doesn't appear to be life threatening...just annoying as hell. Decline has been fairly slow and consistence for the last two years.

And, as for Lupus...yeah, thought about that too. (Googling symptoms on the internet can turn up all kinds of stuff).

Personally, I'm looking for a chemical imbalance, an infection, or something in the environment out here.

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Besides, it doesn't appear to be life threatening...just annoying as hell. Decline has been fairly slow and consistence for the last two years.

You need to stop that decline before you are looking at rock bottom with a huge mountain to climb back up. I'm no doctor, but my guess is that a persistent decline will eventually become life threatening.

I'm 38 and Ive had two back surgeries - one in Jan of 2000 and one in May of this year. What I learned from my first back problem was how not to do things. I suffered through a lot of pain, physical threapy, spinal steriod injections, MRI's and LOTS of sleepless nights. Basically, every option was fully exhausted before I was finally sent to a surgeon. After 5 minutes of examining me he said "so, you want me to fix this?" I said yes, and 8 days later I was in surgery.

When this problem cropped up on me with similar symptoms this past March, I went back to my doc. Having been in this rodeo before I straight up told him "I'm doing muscle relaxers and anti-infallatories for two weeks. If nothing changes, you are sending me for an MRI." After a brief look of being stunned, he merely replied with "OK". 2 1/2 weeks later I had an MRI and a referral back to the surgeon. Saw the surgeon on a Thursday, and was on the table Monday.

My point is this: Doctors are busy people. They see lots of people who say their back hurts, their legs hurt, they have a rash, they have a cough, they need Viagra, yada yada yada. You need to be the one in charge of your care. You are the one that pays the doctor to do his job. He is working for you. Be the boss! Don't be "willingtocope" with "I don't know" "let's give it some time" or "It's probably______".

Be aggressive! This is your health and your body!

I don't know - "Well then I need you to send me to someone who does."

Let's give it some time - "No. I've given it enough time."

It's probably ________. - "Probably ain't gonna cut it doc. I need a definitive answer."

I don't know what your life situation is, but if you've stumped the band there in Iowa, it's time to look outside the state. Google as much as you can. Someone out there has been through exactly the same thing you have. There is an answer somewhere, it just may be hard to find.

Think of it in Credit Terms! Doctor = CRA. Disupte until you get what you want! :lol:

Lastly.....

but...if I were 32 instead of 62, the symptoms I've presented to him so far might be more significant.[\quote]

You are 62, not 92. THINK like 32 year old! Don't sell yourself short and chalk this up to age! As soon as you get moved, stay on this as hard and heavy as you can until you get an answer.

I bet you want to see 92 more than I want to see a 750 FICO!

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So, blood tests came back. Nothing remarkable. Everything normal.

I just don't understand. I have periods of an hour or two when everything works...not perfect, but much better than the other times. We're moving this week, so I spent Sunday packing up the computer crap. (I've got boxes and boxes of computer crap). I wasn't dancing up and down the stairs, but I was able to go up and down a dozen times or so. Yesterday, we spent the morning signing papers and closing on the house. When we came back, I loaded 6 or 8 small boxes of food into the van, took it over to the house, unloaded it, and had to sit down for the rest of the day. I wasn't tired or out of breath or anything like that...my legs just didn't work.

Today, I'm back at work. Legs seem pretty weak.

I just can't find the magic set of circumstances that makes one day good and the other day bad.

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