willingtocope

Is there a doctor in the house?

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So, I've emailed Dr. Fink at two different addresses and have received no response. Hmmmm....

I've been taking Bactofen for two weeks now...nothing good noted. Night time cramps are worse...I've learned NOT to strecth while laying down. When I wake up in the morning, I've got what feels like cramps in both latissimus dorsi muscles...actually, more like the tightness you get when you strike a body builder pose. Not painful, but noticable.

The literature on Bactofen says that dosage should be increased until desired results obtained. I'll give it another two weeks, then give the doc a call.

In the meantime, I've been consulting with Dr. Internet again. I note that all of my symptoms could be explained by a vitamin E definiciency. I've looked back over my notes, and I don't think any of the docs have checked that. I note that a blood test for accurate levels is not available. Diagnosis is by observing symptoms, and seems to be associated with Spinal Cerebellar Degeneration with progressinve spastic paraplegia and ataxia...exactly what the guy in Des Moines suggested. And, of course, that can be diagnosed as Heritary Spastic Paraplegia which is what the doc in Iowa City came up with.

Well, that's easily tested. I'll go get me some Vitamin E supplements. Best I can come up with from the web is at 130 kilos, I could take about 2.6 grams per day. I'll start with 2.0 and see where that leads.

Question is...why?

Has my diet in Iowa changed from what we were eating in Ohio? Not that I'm aware of, unless its something weird like Ohio milk has more E than Iowa. I did eat a lot...I mean a lot...of peanuts up until the last year or so. Maybe a 5 pound jar every two weeks or so. Nuts are a good source of E. Why'd I stop? Another one of those "which came first?" questions. Legs are weak. Peanuts are in an aisle at the other end of the store. Stopped making the walk over there. Legs got weaker. Hell, I don't know.

Not taking Statins anymore? There is some evidence that E keeps LDL in check...but, nothing seems to imply the opposite.

The multivitamin I'm taking now has 100% RDA of E in it...but, we've established already that I'm not the average size dummy they use to test with. In fact, there's a thought. Until I can get to the store, I'll take 4 multivitamins a day. 4 times all that other stuff won't hurt me.

Stay tuned...

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debtmama: thanks...hugs always appreciated.

Next verse. Had another small episode on last Thursday. Extreme weakness. Managed to get out of bed, coffee, showered, got dressed (DW had to help with socks) and got to work...but...not happy about it. Both legs felt like they were locked at the knee. Got around with my walker by essentially dragging my feet.

Called the doctor at UofI. I explained that for the first couple of days 5mg Bactofen / 3times a day seemed to help...a little bit...but some help. Explained that I can now feel the muscle tightness (something I couldn't do before). I can now point to the muscle that's locked.

She said to increase the Bactofen dosage...maybe 10mg in the morning, maybe 10mg / 3times a day. Okay. We'll give that a try.

I asked about the possiblity of my problems being vitamin E deficiency. She said she didn't note some of the major indicators. No tremor. No difficulty making arms go in the right direction. No ataxia.

I asked if taking vitamin E supplements would interferre with anything I'm already taking. She said no, but she didn't think it would help, and if I'm taking a multivitamin (I am) I should be getting all the E I would need.

Hmmmm....doctor in Des Moines noted cerebreal spinal degeneration with ataxia...I was only taking 1/2 mg clonezeapam when I saw him. First doctor in UofI noted tremor, dystonia, and mild ataxia...I was trying to wean myself off clonezeapam when I saw her. Current doctor didn't see any of that, but I was back on 1mg clonezeapam twice a day when she diagnosed.

Who knows. Anyway...I got me some vitamin E. 1000IU, twice a day. And, I'll play with the bactofen dosage. We'll see where that leads.

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debtmama: thanks...hugs always appreciated.

Next verse. Had another small episode on last Thursday. Extreme weakness. Managed to get out of bed, coffee, showered, got dressed (DW had to help with socks) and got to work...but...not happy about it. Both legs felt like they were locked at the knee. Got around with my walker by essentially dragging my feet.

Called the doctor at UofI. I explained that for the first couple of days 5mg Bactofen / 3times a day seemed to help...a little bit...but some help. Explained that I can now feel the muscle tightness (something I couldn't do before). I can now point to the muscle that's locked.

She said to increase the Bactofen dosage...maybe 10mg in the morning, maybe 10mg / 3times a day. Okay. We'll give that a try.

I asked about the possiblity of my problems being vitamin E deficiency. She said she didn't note some of the major indicators. No tremor. No difficulty making arms go in the right direction. No ataxia.

I asked if taking vitamin E supplements would interferre with anything I'm already taking. She said no, but she didn't think it would help, and if I'm taking a multivitamin (I am) I should be getting all the E I would need.

Hmmmm....doctor in Des Moines noted cerebreal spinal degeneration with ataxia...I was only taking 1/2 mg clonezeapam when I saw him. First doctor in UofI noted tremor, dystonia, and mild ataxia...I was trying to wean myself off clonezeapam when I saw her. Current doctor didn't see any of that, but I was back on 1mg clonezeapam twice a day when she diagnosed.

Who knows. Anyway...I got me some vitamin E. 1000IU, twice a day. And, I'll play with the bactofen dosage. We'll see where that leads.

just a small note of caution with the vit e = it's a fat-soluble vit (as are a,d and k), so levels can build up in your body (unlike vit c and the b's, which are water-soluble and excess can be easily excreted). it is possible to overdose on vit e. here's a link to some info on symtpoms, and a table that gives the recommended upper limits of intake for vit e

http://ods.od.nih.gov/FACTSHEETS/VITAMINE.ASP

hope they get you figured out soon :)++

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alhoa: Yep, I read that specific site before. It puts the "Tolerable Upper Intake Level" at 1500IU for a male 19-70. I'm about half again the size of a normal male, and I'm taking 2120IU a day. My guess is, I'm probably okay.

One of the things that I found interesting about that site is that it talks about its possible that Vitamin E oxidizes LDL cholesterol, and may therefore provide some protection for people with coronary artery disease (me!). Hmmm.

Anyway...much to early to tell...and it could just be wishful thinking on my part...and I have increased the dosage of Bactofen to 25mg/day...but, something gives me a 5 or 10 minute improvement every once in awhile. Like right now, I got up out of the chair in front of the TV with less than normal effort. Walked into the kitchen and down the basement stairs with my cane. Into the computer room here without hanging on to everything I pass. Legs aren't anywhere near normal, but I was taking actual steps instead of dragging my feet. That happened about the same time yesterday.

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Fudge...

So, 2120 IU of vitamin E for 6 weeks. No effect.

Bactofen now at 20mg / 3 times daily. No effect.

12-20 minutes on the AirDyne every night. Drag my butt off the bike into bed...sleep good, but no improvement in the morning.

Getting worse. Can't seem to pick my feet up off the floor. Using the walker in the house, now. (Mostly so I can carry stuff, but if I use the cane, I need to hold onto stuff).

Got a lumbar puncture scheduled in a couple of weeks.

Talked with everyone in my family...big family...nobody else with the same symptoms. HSP seems unlikely. Maybe Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). We'll see...

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[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).]

This is backwards. The scale goes from 1 (nothing) to 10 (worst)

It's Klonopin not Klonupin (just for your info when you fill out new doctor forms.)

Have you been tested for MS....really tested by an MS specialist?

What are ALL the meds/drugs you take, including dietary supplements and herbs......write down everything you take, even those prescribed by a holistic doc or naturalist? Do you use the usual toothpaste and oral rinse? How much vitamins do you take...especially the fat soluble, A, D, E, K; these cannot be eliminted by the body and is storedm too much can be dangerous. Now, vitamin C or the Bs. When you take these, you urine can turn yellow..

Any drug reactions or allergies?

How much alcohol do you drink? Drink on weekends only? When are your symptoms the worst?

What about cigarettes? Brand name or off brand?

Use any other drugs.....don't worry we cannot find you. Remember...This is your life you're dealing with.

How about immunizations? Any "weird" kind? Any usual reactions, even when you were little?

Your relatives....especially your dad and brothers, any similar symptoms? How about granddad and uncles? How about the females, too.

What kind of jobs have you had? Were there any chemicals around? The same goes for where you've lived and even where you played/camped when you were little.

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[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).]

This is backwards. The scale goes from 1 (nothing) to 10 (worst)

Since no doctor ever asked, I picked my own. On my scale, 1 is when I can't get out of bed.

It's Klonopin not Klonupin (just for your info when you fill out new doctor forms.)

Actually, its Clonazepam. I've been wondering if Rite-Aid in Ohio gets the same generic as Walgreen in Iowa.
Have you been tested for MS....really tested by an MS specialist?
One of the docs I saw at UI specialized in MS. She was pretty sure I don't have MS.

What are ALL the meds/drugs you take, including dietary supplements and herbs......

Right now, 1 mg Clonazepam twice daily, 20 mg Bactofen 3 times a day, 350mg Aspirin, Theragram M plus once a day.

Any drug reactions or allergies?

Only reaction I've ever had was to Zithromax. I threw it up.
How much alcohol do you drink?
Maybe one / two beers a month. (Much less than I'd like).
What about cigarettes?
Quit in 1980.
Use any other drugs.....
Nope. Never did.

How about immunizations? Any "weird" kind? Any usual reactions, even when you were little?

Nothing I remember.

Your relatives....especially your dad and brothers, any similar symptoms? How about granddad and uncles? How about the females, too.

Two brothers have "essential tremor". Mother did. One of my sisters. One of my sons has mild vocal dystonia. Granddads were long gone by the time I came along. I did know several uncles....all died 20-40 years ago...no symptoms I was aware of.
What kind of jobs have you had? Were there any chemicals around? The same goes for where you've lived and even where you played/camped when you were little.
My degree is in chemistry. Spent 1964 - 1972 working for a pressure sensitive adhesives company in the quality control lab. Toluene, acetone, MEK, MIBK contact on a regular basis. No benzene. Lots of polyisobutene, silicone, etc.

Right now, I live in the middle of farm country, so I'm wondering about fertilizers and pesticides. I've been here since May 2006...symptoms got much worse over the last 18 months.

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How about immunizations? Any "weird" kind? Any usual reactions, even when you were little?
You know what? It occurs to me that here's a maybe...

We had our kids early. I was like 22 when the last one was born Taking them to the doctor for their shots, the GP asked DW and I if we had the polio vaccine. Yes, of course, when the Salk vaccine first came out. The doctor suggested we get booster shots of the Sabin vaccine at the same time our kids did. No reaction at the time.

But, in my late 20's, I had a pilonidal sinus / cyst removed from the base of my spine. No pain, but it was draining a lot so the neurosurgeon suggested it be taken off. It was wrapped around my spine, but he said he got it all.

At my six week check up, he asked if there were any problems. I said none with the operation, but I've noticed there is a patch of skin between my right shoulder blade and my spine that doesn't feel right. If DW scratches there, I feel the pressure of her fingers, but not the "scratch" of her fingernails. He asked if I had the Sabin vaccine...I said yes....he said, "oh, okay, than that's just the polio-like virus. Nothing to worry about." He was right...in 3 - 4 months, the lack of sensation went away.

Now...40 years later...the "lack of sensation" is back. That spot on my back has returned, and I'm getting the same non-feeling down my left arm, and from the elbow to my hand on the right. My thighs. Left calf.

Post polio syndrome? Hmmmm...another thing to discuss with the doctor (assuming I can get her to think outside her speciality).

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I think any neurologist would love to have you as a patient....especially with your familial background. And, this being on you mom's side, I wonder if you could have some kind of neurological disorder that's more prominent in females.

Have you been evaluated by a geneticists?

Maybe these sites can be of help?

Dystonia Medical Research Foundation:

http://tinyurl.com/9fgb67

Familial dystonia and focal dystonia:

http://www.dystonia.org.uk/about-dystonia-page7543.html (seems like a good site!)

Your son has vocal, not focal, dystonia, correct??

Vocal dystonia:

http://www.dystonia.org.za/laryngeal.htm

Friedreich Ataxia:

http://tinyurl.com/4e4hn

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Now...40 years later...the "lack of sensation" is back. That spot on my back has returned, and I'm getting the same non-feeling down my left arm, and from the elbow to my hand on the right. My thighs. Left calf.

Post polio syndrome? Hmmmm...another thing to discuss with the doctor (assuming I can get her to think outside her speciality).

This sounds extremely relevant to what you are going through and makes sense. Good luck!

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awwwgeez: I appreciate the links. I've been to most of them already. L-Dopa responsive dystonia is a maybe. The only symptom I have, however, that's was diagnosed as dystonia is a head wobble. And the clonazepam controls that.

Ataxia is such a broad category that its difficult to say. My reflexes are still quite pronounced. And that includes not only the whack the knee with a hammer variety, but any sudden sensation. For example, I was crawling around on the bathroom floor unplugging the bathtub drain today, and whenever the top of my foot would touch an irregularity in the tile, my whole leg would spasm....and then cramp. Fun. That probably fits the category of a "startle reflex"...

Have you been evaluated by a geneticists?

No, not yet. All the docs I've seen have suggested it, but, its very expensive (I hear) and my insurance probably wouldn't cover it (since all the docs agree that whatever I've got doesn't appear to life threatening). I also understand that there are multiple defects that they'd have to check for, and, no real evidence (so far) that "this defect means that effect". And, most of the things they test for don't have a cure or treatment anyway.
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So...lumbar puncture scheduled for tommorrow at 1pm...appointment with doctor at 4pm. 67.3 miles east. Blizzard warnings for tommorrow afternoon. No snow, just 50 mile per hour winds. Hmmmm...sounds like a really exciting drive home (if I can talk DW into going in the first place).

Really, really want this test done. Clear with normal pressure (which I'm betting will happen) means nothing. Cloudy = infection. Virus? Bacteria? Cancer? Too easy. I'm betting clear. Bloody? Nah...again, too easy.

So, I've been talking with Dr. Internet again. Let's try some other symptoms that none of the neuro people have picked up on.

I've got a "discomfort" in my right side...towards the front, below the ribs. I pointed this out to PCP about 18 months ago, or so, and his thought was "doesn't seem like liver problem...maybe spleen, maybe diverticulitus (sp?)...if it gets worse, we'll investigate."

In Novemember (?), Optomertist (sp?) tells me I've got cataracts in both eyes. Ripe enough to operate on. I ask why didn't you see them two years ago when I was last in...he says, he did, but they weren't significant. I decided to postpone until 2009 when our flex play reloads. Strange thing is, although glass' prescription changed, I still don't where the glasses he gave me. I can read just fine, and although road signs more that 100 yds away are a little fuzzy, no problem driving...even at night. I look at my eyes in the mirror, and I don't see any cloudiness...but, I do see sort of a starburst around each pupil. Golden, sort of.

So...do either of those things relate to tremor, dystonia, and leg weakness. Yep. A thing called "Wilson's disease". Skin isn't yellow. Current nerve doc did test for copper in my blood, but I think she order the test for low concentration as opposed to the one for high serum levels. Hmmmm?

I'll put that on my list for tommorrow...if I get there.

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So...I did call first thing yesterday morning...I asked the scheduling person if it was possible to have the spinal tap done here in my area...she transfered me to the doc's nurse. Got voice mail. Left message. Nurse calls back about 3:30 or so. I ask if the tap can be done in my area...she says, "well, it would have to be done by a doctor"....duh! I point out that because of the college in this little town, we do have a nationally recognized surgical facitlity at the regional medical center. She says, "well, I'll have to ask the doctor".

I said, "could you also ask the doctor about the copper test she had done about 2 - 3 months ago. Was it the test that would show Wilson's disease?". She said, "Wilson's disease? Who said anything about Wilson's disease?" I said, "Yeah, I know, I found it on the internet...I seem to have the right symptoms". She gave me a 5 minute lecture about "self diagnosis" and "you can't beleive what you read". Then she said she'll have the doctor call me.

Doc called about 6pm. Same condesending attitude about having the spinal tap done locally. I mentioned Wilson's...she said, "not likely, that's a young person's disease and is always fatal". Okay. www.WilsonsDisease.org says people as old as 70 have been found to have the disease...it all depends on the environment you happen to be in. If you only get the amount of copper your body can deal with, you're fine.

So...I say, "well, the baclofen doesn't seem to be helping. I've upped the dosage as we discussed, (20mg / 4 times a day) and there's been no positive result. In fact, I may be a little worse. What else you got?". Long silence...

Okay, so I need to find another doctor. (Yeah, I know...the Mayo...but right now that's 3 or 4 months of heavy snow away. Ain't happening soon.).

Start at the beginning...I'll go see my PCP in the next week or so (once the temperature gets above zero again), and see if he has other ideas.

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So...I did call first thing yesterday morning...I asked the scheduling person if it was possible to have the spinal tap done here in my area...she transfered me to the doc's nurse. Got voice mail. Left message. Nurse calls back about 3:30 or so. I ask if the tap can be done in my area...she says, "well, it would have to be done by a doctor"....duh! I point out that because of the college in this little town, we do have a nationally recognized surgical facitlity at the regional medical center. She says, "well, I'll have to ask the doctor".

I said, "could you also ask the doctor about the copper test she had done about 2 - 3 months ago. Was it the test that would show Wilson's disease?". She said, "Wilson's disease? Who said anything about Wilson's disease?" I said, "Yeah, I know, I found it on the internet...I seem to have the right symptoms". She gave me a 5 minute lecture about "self diagnosis" and "you can't beleive what you read". Then she said she'll have the doctor call me.

Doc called about 6pm. Same condesending attitude about having the spinal tap done locally. I mentioned Wilson's...she said, "not likely, that's a young person's disease and is always fatal". Okay. www.WilsonsDisease.org says people as old as 70 have been found to have the disease...it all depends on the environment you happen to be in. If you only get the amount of copper your body can deal with, you're fine.

So...I say, "well, the baclofen doesn't seem to be helping. I've upped the dosage as we discussed, (20mg / 4 times a day) and there's been no positive result. In fact, I may be a little worse. What else you got?". Long silence...

Wow I'm sorry you have to deal with those kind of people! I hope you can find somebody who will actually give you the time of day and not talk to you like you are a two year old. I'm sure that just makes the whole fricking thing worse. Good luck!

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Thanks for the offer, but in order to get to TN I'd have to first get out of IA. Its supposed to be -16 here tonight! I'm thinking the snow isn't going away until like May or so....

I'm going to go camp out in my PCP's office and make him do a little work....

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