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Is there a doctor in the house?


willingtocope
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  • 3 weeks later...

So, I got my PCP's attention. Not sure what good it will do, but at least he's interested. We had a long talk Tuesday. I suggested that perhaps I've had something like Wilson's disease all along. Essential tremor from birth (controlled by Inderol in my early 30's) then mild cervical dystonia in my late 40's (controlled by Clonezapam) and now this beginning in my early 60's. I suggested that the environment I grew up in, and lived in up until recently simply didn't give me enough copper to do more than be a nuisance. Now, here in Iowa, with copper in the water around .113 parts / billlion, its backing up on me.

He's done some checking with the town's "wise old endrochronologist (sp?)" , who agreed "...well, maybe..." and then referred him to the "man" at U of I that is an expert on Wilson's disease.

So, he's going to check with my optomertist (sp?) about exactly what my cataracts amount to. (As it happens, I called the eye guy myself on Wednesday. He was kind of unclear as to exactly what WD would present (brown/yellow rings around the iris and/or sunflower cataracts visible only with a split lamp). He did seem adamant that what he saw was "nuclear cataracts" which he says is quite common in people my age). From what I've read, nuclear cataracts should at least have affected my vision by now. I still don't need glasses. We'll see what he and the PCP decide.

PCP has talked to the latest neuro doc at U of I about having a lumbar puncture done here locally. (I've stopped taking the Bactofen she prescribed...I got up to 20mg/3 times a day with no effect).

But first, his plan is to first run the primary indicators for WD...copper levels in the blood and 24 hr urine test. I'm going to stop at the hospital Monday morning for the blood work. Only thing I'm concerned about is that I've been taking 50mg zinc glucocamate (sp?) 3 times a day for the last 4 weeks. I know that not long enough to effect a remission, but I hope it doesn't mask the tests.

Ah, well, the saga continues.

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  • 4 weeks later...

So...developments.

Wilson's disease seems unlikely...but...with the delays in getting from one doctor to another, I've done some self medicating. 50mg of Zinc Glucocante (sp?) 3 times a day. I started about 1/15...a few days before seeing my PCP. In looking over old blood tests he said, serum copper done about Nov 30th or so was "low normal". I suggested Wilson's so he was interested enough to order copper cerouplasim (sp?) and 24 hr urine. Both were done on 2/12...so I'd had about three weeks of zinc. First came back 27 on a "normal' scale of 20 to 50. Second was "30". Both not definitive. But, I'm still taking zinc.

The most interesting part of this, is that prior to the zinc, I noticed that I had bright yellow circles around the pupils of my eyes, with a starburst pattern radiating outward. Now, after 6 weeks of zinc....the yellow circles are now brown, and the starburst has gone away. What the hell does that mean?

Anyway, finally got my lumbar punctured yesterday. Locally. Doc says the fluid was clear, pressure "20" (is that ml of water?) which he said was high, but since they did the procedure with me sitting up leaning over a table, it might not be indicative of anything. He ordered all the tests in the book, and a pile of blood work also...including something where they had to keep the vial in ice.

So...we wait some more.

In the meantime, walking deterioates. My boss has insisted I use the company wheel chair to get across the building to our weekly staff meetings. Not because I can't get there on my own, but because it takes me 20 minutes for what should be a 5 minute walk. Hmmmm.

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  • 2 weeks later...

Lumbar puncture results from PCP. Nothing remarkable. Now what?

His office FAX'd results to the last nerve doc I saw in Iowa City. I'll call her next week to see if she has any other opinion...but...

In the mean time, my employer has given me paper to forward to a doctor (PCP?, nerve doc?) regarding certification for the Family and Medical Leave Act. As I understand what I was told, FMLA papers on file means that if I should happen to use up all my sick time and / or vacation with this "condition", the company can't penalize me if I have to take unpaid time off to deal with it. They also will continue to pay for medical insurance.

Not quite sure what to make of this. I'm a programmer. I sit at my desk all day writing code. None of the symptoms I have so far prevent me from doing that...except on the days every now and then when my legs just won't let me walk. On those days, I can CITRIX from my computer at home into work, and continue to write code.

Are they doing this just in case, or is there some other motive I'm not aware of.

Yes, I used up all my sick time last year, but, most of it was doctor visits. I did carry over some vacation time. Just not sure what's going on...

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the act protects your job for temporary time off. Like many new father's will use it if they don't have enough vacation time when a baby is born.

My hubby used it to take 2 weeks off when our daughter had open heart surgery in boston.

Is up to you to use the act. They can't make you use it but they do have to inform you of it by law.

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Ah, so its probably in my best interest just in case...like if I do decide to go park my butt at the Mayo clinic until I get some answers. And, I assume, it would keep my benefits going during the 30 days I'd have to wait for my short term disability insurance to kick in.

I'll get an appointment with my PCP tommorrow and see if he thinks I qualify.

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Family and Medical Leave Act gives you 12 weeks off work and your employer can not penalize you. You can use either intermitten*(sp) or take all at once but you only get 12 weeks. It also protects your job, I would look it up on the net and get informed :) FMLA

  • The employee is entitled to have their benefits maintained, but they must continue to pay their portion during the leave. The employee also has the right to return to the same or equivalent position, pay, and benefits at the conclusion of their leave
  • The Family & Medical Leave Act (FMLA) allows ”eligible” employees to take off up to 12 work weeks in any 12 month period for the birth or adoption of a child, to care for a family member, or if the employee themselves has serious health condition
  • http://www.dol.gov/dol/topic/benefits-leave/fmla.htm

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Have a visit with my PCP last thursday to have him fill out the FMLA paperwork. He tells me what I already heard from his nurse...the lumbar puncture showed nothing remarkable (except that the fungal growth test isn't complete yet...apparently that takes about a month). But....

He was interested enough in my case to call THE Wilson's Disease specialist at the Univ of Iowa med center. They went over the results of the recent blood tests. The "accepted" normal range for copper ceruloplasm in the blood is 20 - 50 microliters/deciliter. Mine is 27. The guy at UofI says in his opinion, anything under 30 is suspect. His speciality is hepatology...a liver specialist. There are two absolutely definitive tests for Wilson's...one is a genetic test, the other is a liver biospy. So, another road trip.....

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He was interested enough in my case to call THE Wilson's Disease specialist at the Univ of Iowa med center. They went over the results of the recent blood tests. The "accepted" normal range for copper ceruloplasm in the blood is 20 - 50 microliters/deciliter. Mine is 27. The guy at UofI says in his opinion, anything under 30 is suspect. His speciality is hepatology...a liver specialist. There are two absolutely definitive tests for Wilson's...one is a genetic test, the other is a liver biospy. So, another road trip.....

Do you feel like you might be getting somewhere now though? Like maybe your're on the right track here? I sure hope so.

*big hug*

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  • 3 weeks later...

So...on 3/27 or so, I talked to the neurologist in Iowa City. She confirmed nothing remarkable from the lumbar puncture. Had no further suggestions.

I told her about PCP arranging an appointment with the liver specialist. She said, good, he's a nice guy...maybe he'll have some suggestions. She asked why him? I told her about the copper ceruloplasm results. She said, well, maybe slightly low, but not remarkable. I said, well, maybe I scewed the numbers a bit by taking 50mg Zinc 3 times a day. She said, who told you to do that? That can be dangerous!

I said, nobody...me and Dr. Internet decided since no one had any real answers, maybe Wilson's disease is a possiblity. Zinc salts are a long term maintaince treatment for the condition, I figured it couldn't hurt. She said, she'd recommend I stop immediately to avoid potential damage.

Uh huh. So, I stopped.

Saw the liver guy 4/8. Turns out his primary intent was to convince me I don't have Wilson's. In his opinion, all test results are normal. He did examine me, but, found nothing of signicance in his speciality. And, being completely honest with me, agreed to run the blood tests again just to further convince me I don't have Wilson's. He even arranged an appointment with an opthamalogist (sp?) to check for KF-rings in my eyes. That will be 4/20.

I pointed out that when I first read about Wilson's, I noted that I have been dianozed with cataracts but my vision doesn't seem to be effected. I also had bright yellow startburst patterns behind my pupils. So, I thought I'd try the zinc. In the 4-6 weeks I was taking it, the yellow disappeared, and I now have brown circles around my pupils. (Wilson related KF-rings are brown circles around the iris...not quite the same thing). He did say if I thought the zinc was doing something good, to continue taking it...it would do me no harm.

Right. One doctor says its dangerous, the other says, in effect, its a placebo and won't hurt me.

Anyway, this guy's going to review the MRI's (something about Wilson's showing up on the T2 images?), review his blood test results, and send his findings to my PCP. If any of this returns even slightly questionable, he'll run a short Penicillamine trial. That's a copper chelating agent, and if it dumps a bunch of copper into my urine, then maybe we've got a case.

However...he's 99% sure I don't have Wilson's.

After the eye doctor, I'll go sit on my PCP's doorstep again and see what else we can try. He has already suggested the Mayo, and, I'd like to take him up on it...but...

DW is losing patience with all this. I'm not getting done all the things around the house she wants fixed (some wiring problems, the deck needs work, we have to pay for taking care of the lawn...etc.) We don't go anywhere. She wants to go back home for a couple days (Ohio) and if I go to the Mayo, that will take our spare money. We could certainly cover a lot of the cost of either trip with our Med Flex account (there's a nerve doc in Ohio I'd like to see) but then their would be much left to get her cataracts fixed. I'm sure not blaming her for complaining. This crap has been an obsession with me, and we're not that old that we should hole up in the house all the time.

Hmmmm....I need to get this fixed...

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  • 2 months later...

So, after the Liver Spe******t, I go to my PCP May 4th and ask for an Infectious Disease guy at UofI. I went to see him on May 22. After spendiing 1-1/2 getting the once over by one of his students, he wanders in. He says, "It says here, you've got Heritary Spastic Paraplegia. What are you doing here?"

I say, "well, okay, I'll agree that my symptoms are of HSP, but the hereitary part makes no sense, and I'm looking for what could be causing this." He says, "well, its not Tropical SP...you've already been tested for that...and, I've got nothing else. Maybe syphilius or AIDS. You want I should have those tests run?"

Sure...why not. Got the results back in mid June. Nothing.

I went to see the PCP again Jun 18th. I point out white blood count is slightly elevated, ceruplasim is 22 (normal range is 20-60), and LCP (sp?) is 10.1 (normal range is 15-45). I've got pain in the left side of my back that reminds me of shingles.

Now what. He says MAYO. So, his nurse sends the paper work. I get a letter from them last week.

I'm now on the waiting list to get an appointment with neurology. Great. No sense of urgency there. They say "call if it gets life threatening".

In the meantime, last Thursday (6/25) I wake up in the middle of the night, go pee, go back to bed. Wake up at 5, and I can't get out of bed. Get my legs on the floor, but can't get them under me to stand up. Wife and I try for about an hour to get me standing, but it don't work. Fever, about 101 or so.

I've had these "legs go away completely" episodes before, so we don't panic...I simply let myself down on the floor, and say I'll sleep there for awhile. Call off work. In previous times, I rest for a couple hours, and then I'm able to get up an move. This time, I spend all day thrusday on the floor. My wife helps me drag my butt into the living room, and I sleep on the floor. I've got rug burns on knees and elbows.

Friday morning, I wake up...do a pushup, rock back and get up on my knees. Crawl over to the chair, lift myself with my arms, and I'm standing up again. Not great, but I can shuffle/walk again. Saturday, I sit in my chair and watch TV. Sunday, I get a shower...even go down the basement to work on the computers.

Damn. I miss two days of work, and blow off a weekend.

I'm moving good right now (better than I have for a couple of months). I guess I got to call the Mayo and see if I can move up the list.

Edited by willingtocope
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OMG.

Because I use a application on my phone to access the forum I have trouble reading the full posts.

Have you been tested for p.a.d.?

Have all autoimmune diseases been ruled out?

Do you experience phantom/real numbness in any of your other limbs

Do you have any warning symptoms before onset of numbness

When you have the numbness in legs, is their any sensation of discomfort? Or is it completely totally numb.

Have you had scans of brain, if so what types.

Were there any anomalies (sp)

Have you suffered from any serious sicknesses in recent (3 years or less) like serious strep infection or a cold or flu that had prolonged duration with fever?

Do you often suffer from high temp but no signs of sickness

Does the pain in your back radiate or change inseverity or location? If so have you isolated any precurssors that cause it to change?

If not is the pain localized only to the one location?

Are you on any medications you take on regular basis?

If yes are any for blood pressure or blood thinners like dilatin (sp)

How much water do you drink in ounces per day.

Has your urine had a funny smell or been any other color other than very light yellow.

What does your daily diet consist of....

Do you have unpleasant reactions to paticular foods consistently?

(Is this too personal yet)

Have you traveled out of country in past 7 years?

If so where

Where have you been in us in the past 3 years?

Ok that's all for now.....

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