willingtocope

Is there a doctor in the house?

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I used to work in HR let me say hr is there to make you feel like they protect you when in fact they protect the company.

With that said they are probably just making sure the proper paperwork is filled out, you have to deal with chronic illness in very specific ways, if they sense you may have a very serious chronic illness they need to document it, and make sure to follow all the rules.

A lot of times people will say they are exp. Chonic long term illness when in fact they are not, employeers have very strict guides on what they can require from you as proof of illness, and the way you deal with chronic long term illness is different they just want to deal with you in a lawful way.

I wouldn't be too worried.

They really just want "proof" that you are sick and this is the only real way they can ask you for it.

Since you are sick, you should be fine.

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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.

Yes (its not PAD).

Autoimmune diseasess? Several. Mostly HSP or Primary Lateral Schelosi related.

Numbness isn't the right word. Major problem is legs won't move when I want them to. For example, sitting in a chair where my but is lower than my knees, I can strecth out my legs, but then can't pull them back. As for how my legs feel when touched, I can feel the pressure, but not the "tactile" sense on my skin. Sometimes I can get up from a chair and walk (with a walker to balance me) more or less normally. Other times, I have to "long step" right leg, dip, bend left leg at knew and scoot. No warning symptoms of when one or the other is going to happen.

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

Were there any anomalies (sp)

Several MRI's with and without contrast. Brain all the way down my spine. Only anomalie is evidence of a small stroke, very old, lower left deep inside.
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
Nope. In fact, the only measurable fever I've had in 5/6 years was last week.
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?
No. Like I said, it feels like "shingles" pain (I've had it before). Right side from shoulder blade, under my arm, to my chest. Always there. Doesn't change when I breath or move.
Are you on any medications you take on regular bas]is?

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

Only thing consistent over last 4/5 years is Clonazepam. BP is fine (120/70). PDP has given me one BP drug for enlarged prostate symptoms...took it for 2 months with no effect so stopped. He's currently got me taking a 'water pill" for edema in my left foot. One month so far, with no effect. I do usually tak 2 aleve in morning for joint pain in my right knee and hip, occasionally some antihistamine, and for the last month or so, I've been taking a homeopathic thing (Hyland?) for leg cramps (its got quinine in it.) 350mg aspirin in the evenng.
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.
8-16ounce of water, 8 oz of milk, 3 cups of coffee, occasional can of pop. Urine is medium yellow...sometimes smells like bacon.
What does your daily diet consist of....

Do you have unpleasant reactions to paticular foods consistently?

Diet is varied, but by no means balances. With a history of heart disease, my wife is careful to feed me low sodium, low choleseral stuff...but, it sometimes resorts to pizza or fast food (with just the two of us).

Have you traveled out of country in past 7 years?
Nope.
Where have you been in us in the past 3 years?
In the middle of farm country Iowa. Small college town 90 miles from anything. Edited by willingtocope
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Your legs aren't truely going numb, do you notice any skin temperature changes in them like your legs feeling hotter or colder than rest of body when they "won't work"

Any tingling or crawly sensation?

By bacon are you saying smokey or meaty, I guess I'm asking cause uncooked bacon almost has a weird semi ammonia smell, while cooked smells sort of smokey.

Is 8 to 16 oz of water a day normal for you? Have you always drank that amount.

The glass of milk a day, is that also something you've done for a very long time?

Do you have an affinity for a certain type of food. Like people who eat sushi can get mercury poisioning or lesser known iodine poisioning etc...

Do you have paticular food you eat a lot of or eat frequently.

Have they done a 24 hour urine test?

When they did the mri's where they done over time like months apart?

Have you noticed any unusual mood swings, I mean of course your going to be more irrated or even slightly depressed when you are ill, but is your mood markedly different?

Any sorts of panickiy episodes?

When they checked for pad what did they do to test it?

Have they done any tests on heart? Specifically did they do a sonagram (sp) near your stomach/groin area?

Do you smoke? Or smoked in the past?

Sounds like your job is indoors now, have you ever held a job that was of the outdoor labor sort?

Any farm work?

Any medical condition/body function that you may have thought was strange in the past, but either due to a doctor saying "oh its normal" or just something you learned to live with, that you now have normalized.

Who ordered and evaluated the autoimmune tests? Were they blood tests?

Edited by ditaloca
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veinous insufficiency can cause similar symptoms, depending on how extensive your circulatory system was checked this could be a possibilty, my thinking is a rhumetologist (sp) would be a good person to evaluate this.

Does taking a warm/hot shower have any affect on symptoms?

Do you feel like your legs feel weak, or do you think they feel fine but just won't do what you are telling them to do?

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My responses in bold

Your legs aren't truely going numb, do you notice any skin temperature changes in them like your legs feeling hotter or colder than rest of body when they "won't work"....colder, but not unconfortable. They are sensitive to cold in winter...work worse when below zeor.

Any tingling or crawly sensation?...crawly sometimes. Extreme "clonus" at times.

By bacon are you saying smokey or meaty, I guess I'm asking cause uncooked bacon almost has a weird semi ammonia smell, while cooked smells sort of smokey....bacon frying in the pan...smokey, I gues.

Is 8 to 16 oz of water a day normal for you? Have you always drank that amount.

The glass of milk a day, is that also something you've done for a very long time?...both normal. I drink milk every day with dinner. Water most days of the week.

Do you have an affinity for a certain type of food. Like people who eat sushi can get mercury poisioning or lesser known iodine poisioning etc...

Do you have paticular food you eat a lot of or eat frequently....not really. Diet is pretty varied (except I don't like fish).

Have they done a 24 hour urine test?...yep. I thought about Wilson's disease and asked for test. 24 hr urine "normal". Ceruplasm 22, which is just above low normal.

When they did the mri's where they done over time like months apart?...months apart. 4 separate sessions, over about 6-8 months.

Have you noticed any unusual mood swings, I mean of course your going to be more irrated or even slightly depressed when you are ill, but is your mood markedly different?

Any sorts of panickiy episodes?...nope. I'm pretty much the most laid back guy you'd ever meet. I find that I do get frustrated sometimes, like when trying to get my shoes on in the morning (put a cement block on your ankle and try to put your foot in a shoe).

When they checked for pad what did they do to test it?...differential ultrasound.

Have they done any tests on heart? Specifically did they do a sonagram (sp) near your stomach/groin area?...I did have triple bypass in 2000, so I see a cardiologist every year. Last time was in March. EKG normal. Stress test and ultrasound two years ago. Ejection fraction better than previous test 4 years ago.

Do you smoke? Or smoked in the past?...quit in 1980

Sounds like your job is indoors now, have you ever held a job that was of the outdoor labor sort?

Any farm work?...worked for a landscaper back in college (1960's). First 9 years after college, worked in the QC lab of an adhesive company. Lots of acetone, hexane, toulene, MEK, MIBK....also through the 60's. Programmer ever since.

Any medical condition/body function that you may have thought was strange in the past, but either due to a doctor saying "oh its normal" or just something you learned to live with, that you now have normalized....I've had essential tremor all my life. Presented with mild dystonia in 1995. That's what the clonezapam was for originally.

Do you know which autoimmune diseases they tested for and ruled out?...not specifically. Neurologis #3 did do bloodwork for two forms of cancer, lyme titrate, and recent spinal tap checked for fungus and bacteria.[/QUOTE]

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Again

veinous insufficiency can cause similar symptoms, depending on how extensive your circulatory system was checked this could be a possibilty, my thinking is a rhumetologist (sp) would be a good person to evaluate this....cardiologist said heart and circulatory system working fine. Nothing he could see

Does taking a warm/hot shower have any affect on symptoms?...hot shower does seem to weaken me.

Do you feel like your legs feel weak, or do you think they feel fine but just won't do what you are telling them to do?...usually, the feeling is that they're just not responding. After struggling for awhile, I do get weaker. For example, my left foot sometimes feels "stuck to the floor". No matter how hard I try, it won't lift. I have to do a "toe / heel" shuffle to move it along. After 5/7 minutes of that, I'm tired. Trying to roll over in bed at night, if one leg is stuck behind the other, I have to struggle to switch sides.

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You know its so hard to get a clear picture over internet, probably why there are no virtual doctors, lol.

Do you have any tenderspots in joint areas, like if you were to apply gentle to moderate pressure on either side of knee, or elbow or lower spine, does it really hurt, like when you have a bad bruise and someone pokes it.

Its pretty funny, the anonymity of the internet totally allows use to throw out all courteous respect for privacy.

Sorry for all questions, my thinking

Most obvious is veinious issues or nuerological

Questions asked are my attempt to narrow it down

Less obvious, infection, reaction, or "side affect" to medicine or disease.

Seems like they checked you over really well for bacteria and fungus.

I do know about a few cases of strange bacterial infections, in the brain that were misdiagnosed as strokes and or brain cancer. Usually in older individuals.

The gentleman diagnosed with brain cancer was in70's and didn't want chemo etc.. surgeon talked him into at least removing the "tumor" well upon the removal surgeon realised it was an abcess. When test results came back the bacteria that caused the infection is something most people who work in attics and old dusty spaces breathe in, it never affects most people. We never figured out how it got to his brain or why it was possibly dormate for years then became a abcess. Tests for illness always came back normal. So many variables, we never figured out why it happened.

That's not likely your situation I just wanted to give an example of how crazy the human body can be. That's the reason I ask so many questions.

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Again

You know its so hard to get a clear picture over internet, probably why there are no virtual doctors, lol....but, on the other hand, the doctors I've been to have all diagnosed me according to their speciality.

Neuro #1 (only one I trust...last saw him in 2000) is the one who noted tremor and dystonia, and prescribed clonezapam. I been in touch with him via email, and his curren thinking is PLS.

Neuro #2 ("movement spe******t, here in Iowa) didn't see anything wrong until I stopped Clonezapam...then he found "periperal neuropathy of unknow origin".

Neuro #3 (DO in Des Moines)...cerrerberal spinal degeneration with ataxia.

Neuro #4 (U of I, movement disorders)...tremor, dystonia, flat feet( huh?), scholeosis...but no explanation.

Neuro #5 (U of I, ???)...hereditary spastic paraplegia. and once that was noted in my records, neither a liver spe******t or infectious disease spe******t would consider anything else.

Do you have any tenderspots in joint areas, like if you were to apply gentle to moderate pressure on either side of knee, or elbow or lower spine, does it really hurt, like when you have a bad bruise and someone pokes it. Third vertabra from bottom hurts when pushes. Tail bone hurts when I sit too long, even on a soft chair. None of the doctors have found this significant. I also have what seems to be carpal tunnel in my left hand.

Most obvious is veinious issues or nuerological...maybe, but none of the meds that should affect HSP seem to make a difference. I got up to 20mg of Baclofen 3 times a day with no effect. Clonesapam controls the tremor, but 2 mg, 3 times a day have not other effect.

Questions asked are my attempt to narrow it down...yes, I appreciate that. Its why I keep this thread going. I keep hoping I'll run across someone who says "hey, I know what that is".

Less obvious, infection, reaction, or "side affect" to medicine or disease...I guess that's what I'm hoping for. Something treatable.

It could be the good old herpes simplex virus (as I said, I have had shingles, that seems to have popped up again).

I also had "spinal menegitis" when I was 5...in 1950...when, as I understand, the differential between that and polio was whether or not there was obvious paralysis. Could be "post polio"...which wouldn't make me too happy.

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Each spe******t only seems to want to diaginos what they know.

At least the tests you have had would seem to rule out ms, lupus, pk, cancers, and for most part circulatory system.

Tests seem to have ruled out scarring or lesions in spineal cord and brain.

Wow you've had quite the medical history. Sounds as if body has really been run through the ringer and on more than one occasion.

Lack of prevalant myalgia blows my last theory.

Scholeosis. Is curvature of spine. Were you ever treated for that? Wore a backbrace.

Flat feet is a silly thing, easly corrected with shoe inserts, and seems irrelvant.

hereditary spastic paraplegia (aka fsp) does fit a lot of symptoms but as you know offers no real treatment

http://patientinfo.ninds.nih.gov/

Are doing studies on that condition.

Your symptoms do best fit into this, ayaxia and stroke etc are all apart of this.

I am pretty much at a loss.

Ummm if its a communication signal issue with nuerons being fully hydrated and no caffiene caffiene may help.

Electricty treatments may help as well.

I am going to ask an old collegue what she or more importantly her husband thinks.

Mayo clinic will or should go through everything head to toe. All major organs, muscle, neuro, circ, etc...

By the way what happens is when you get a diagnosis that "fits" most doctors won't look any further.

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PLS is difficult to determine. One study puts it at 500 individuals in the United States, researchers also believe a good portion of those initially diagnosed with PLS may actually have ALS or HSP.

PLS was first identified in France in the 1850s by Dr. Jean-Martin Charcot. During his landmark analyses of ALS patients, Dr. Charcot encountered a woman with severe spasticity and limb contractures but no muscle wasting. After her death in 1856, the autopsy revealed extensive scarring in the lateral columns of her spinal columns, To primary lateral sclerosis.

Did tests show scarring or lesions on your spinal cord or brain?

They way I read your posts your syptoms don't seem so much as progressive as sporadic.

Pls is usually progressive and spreads to other parts of body.

Edited by ditaloca
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Scholeosis. Is curvature of spine. Were you ever treated for that? Wore a backbrace.

Flat feet is a silly thing, easly corrected with shoe inserts, and seems irrelvant.

Actually, these are both recent diagnosis. For 50-55 years, in every physical, doctors remarked on my high arches, and no one....no one...remarked on scholeosis. Kind of leads me to beleive that it might really be dystonia (or spascitity) pulling things out of alignment.
hereditary spastic paraplegia
I agree that the symptoms fit. I just can't buy the hereditary part. I've got 6 brothers and sisters, and 3 half brothers, 30 neices and nephews, and who know how many grand neices and nephews. No one shows similiar symptoms.
Morgellons
lol...I got enough greif when I mentioned Wilson's disease. (i'm still thinking it could be a copper / zinc related issue).
Did tests show scarring or lesions on your spinal cord or brain?

They way I read your posts your syptoms don't seem so much as progressive as sporadic

No scarring noted. However, the one portion of my spine that they didn't do an MRI with contrast was the lower portion. I had a pilonial cyst (actually, sinus) removed in my mid 20's. Surgeon remarked that it was both infected and twisted around my spinal cord. There could be scar tissue there.

As to "progressing", I'm just not sure. Left hand...carpal tunnel? Left arm weak. Fingers work less well on both hands. I can still type, but buttons are getting more diIfficult. I would say the degredation is in spurts. It used to be most days were a 4 or 5. Now most days are a 1. Once a month or so, I get a 2...every few months (like last week) I get a 0.

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Are you sure you weren't adopet <wink>

I'm teasing.

I don't know if they have known genetic markers for the HSP if they do you could always try to convice your hmo to pay for genetic tests.

I would say usually when it takes several diagnosis" to explain all your symptoms its probably something else. The best diagnosis is one that fits every single symptom...or 95% of them.

I'm sorry did you tell me you had liver disease?

I remember you said you bruise normally and blood levels and urine levels were pretty much normal right?

Grrr I hate my phones blog program, I can't look at other responses.

Edited by ditaloca
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Are you sure you weren't adopet <wink>

I'm teasing.

Often wondered that myself...or, at least that there was something else weird in my birth. My mother was in her middle 40's when I was born...I''m 6 yrs younger than the next older...19 yrs younger than the oldest. I was also tole (when I was very young, so I probably misunderstood, the my mom had a hysterectomy before I was born. Since I was caesarian, it was probably WHEN I was born.
I don't know if they have known genetic markers for the HSP if they do you could always try to convice your hmo to pay for genetic tests.
From what I've read, there are like 7 or 14 "markers" associated with HSP, each requiring a separate test. One thing all the doctors have agree on is that it would be very expensive and not definitive.
I'm sorry did you tell me you had liver disease?

I remember you said you bruise normally and blood levels and urine levels were pretty much normal right?

no liver disease. Blood ans urine fairly normal except for slightly elevated white count and ceruplasim at 22.
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Do you ever have problems with speech?

Like you want to talk but can't. Your mouth won't work but your brain is.

Do you have any memory issues?

If so do they come and go or are they progressive or constant.

Was there anything remarkable about your birth? Or your moms pregnancy with you?

(Aka were you born premature, did she take meds, have previous history of late term miscarriage etc...)

Edited by ditaloca
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Do you ever have problems with speech?

Like you want to talk but can't. Your mouth won't work but your brain is.

No, nothing like that. I do like to suck on ice cubes, and when my tongue gets cold, my speech is a little slurred, but that's not the same thing.

Do you have any memory issues?

Whose opinion? Mine or my wife's? Clonezapam does some4imes play with my short term memory. Tell me something now, and in ten minutes I'll forget it (like "bring me a glass of water on your way back"). But, an hour later, I'll remember that you asked.

If so do they come and go or are they progressive or constant. Really, no problem.

Was there anything remarkable about your birth? Or your moms pregnancy with you?

(Aka were you born premature, did she take meds, have previous history of late term miscarriage etc...)Like I said, casearian. And, 10 pounds, 12 ozs. Nothing else I'm aware of.

Further developments. I called the mayo to see when I could expect an appointment. Scheduler told me that I'm on the waiting list...could be months before I'm called...and then months after than before I'm scheduled. Great. No way we're going to drive to Rochester MN in December or January.

So..I've been talking to Dr. Internet again. Perhaps levadopa responsive dystonia? I do have mild cervical dsystonia. Clonezapam "masks" that, so...my nerve doc in Ohio has seen it, and one of the docs here in Iowa (after I stopped taking the drug for a month before I saw her). She's the one that noted scholeosis on my upper spine. Perhaps I've now developed more general dystonia. That would also explain spasticity in my legs. Hmmm..

I've talked my PCP into increasing Clonezapam to 2mg / 3 times a day, but frankly, after a week, I've noticed no difference (other than getting sleepy during the day). I think I'll see if he's comfortable with prescribing l-dopa.

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Update: So, I put in a call to the nerve doc at U of I the diagnosed me with herititary spastic paraplegia. I asked if she would write me a script for Sinemet (levodopa/cardidopa).

I do have dystonia...at least cervical dystonia diagnosed back in the 90's by a neurologist in Ohio. I've been taking Clonezapam all these years for that and essential tremor. Actually, I got into an agrument with the first nerve guy I saw here in Iowa four years ago, when my right leg first began to "droop" a little when I was walking. He said I didn't have dystonia...the only reference he saw to it in my records was from a "student" who examined me at the Med College in Ohio...with no confirmation by any "real doctor". I pointed out that I was already taken Clonezapam prescribed by a doctor I had been seeing prior to him getting out of the business, and that both the cervical dystonia and essential tremor were well controlled by the time I first went to the Med College. He didn't seem impressed.

Fast forward to the first nerve doc I saw at U of I. I had stopped taking Clonezapam at the suggestion of my cardiologist. (I told him I was stopping Pravachol in case my problems were Statin induced...he said, why not stop the Clonezapam also to make sure that's not the problem). Anyway, this doc did remark on essential tremor and cervical dystonia....and, she suggested I start up the drug again. Okay.

She also noted scholeosis at the top of my spine with a curve to the left. As far as I know, she was the first to ever notice.

So, I look up all my symptoms on the internet and come across "l-dopa responsive dystonia". Sometimes misdiagnosed as spastic paraplegia.

At any rate, the latest nerve doc in U of I talked with her colleague who recommended me to her...and...they give me a big MAYBE. At least I pick up a script for Sinemet tommorrow. So, stay tuned kiddies...we'll see where that leads.

(And in the mean time, the doctor is going to see if her secretary can light a fire under the Mayo so I'll get an appointment there sooner rather than later).

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Nothing remarkable from the ldopa as yet. Its only been a week, and the doctor prescribed a minimal dose. I do have a little "light headed"-ness...not exaxtly dizzy, but less steady on my feet. Don't know if it's related, but I've noticed my right foot wants to turn outward when I walk or ride my airdyne.

U of I was able to light a fire under the Mayo. I've got an appointment for August 31st. I'm trying to assemble all the medical records I can.

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Having medical info all together will help a lot!

Also make sure your firm about what you think it is or isn't and why you feel that way, these people should be elite at explaining it to you. So if they say we think its such and such, ask them why they think that, this way if they're off you can tell them.

Communication is your best tool!

In the meantime kill some time and play doctor!

http://www.mayoclinic.com/health/symptom-checker/DS00671

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Hey check this out

http://en.m.wikipedia.org/wiki/Menkes_disease

http://en.m.wikipedia.org/wiki/Ehlers-Danlos_syndrome?wasRedirected=true

So obviously you don't have kinky colorless hair, but according to seminar I went to recently they have very few cases that were extremely mild and onset in adolescence... I don't know but the onset of spine abnormality in late life is most common in connective tissue disorders ...

Also look at EDS and connective tissue disorders, since you don't have orange skin it could be the EDS is a rare form...

This menkes involves copper as well, let me know what you think.

Edited by ditaloca
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Some form of multiple sclerosis.

Get to the Mayo...meet with a neurologist for initial consultation. He looks at MRIs taken over the last two years and says, "ah, yes, there in the cervical spine, that little white area. Subtle, but interesting. Lets do another MRI".

Turns out they have the sausage machines, rather than the open MRIs they used in Des Moines, but, mildy sedated, they squeezed my huge shoulders and chest into the tiny tube for about 90 minutes. Lots of pictures, with and without contrast.

Meet with the neurologist again yesterday, and he says "look here, and here, and here in your brain. Sclerosis. In multiple places. That's MS."

I go back next Thursday for another lumbar puncture and to meet with their MS Specialt, but the neurologist is 99.9% certain that's the problem.

Not the greatest news, but, treatable. And not immediately fatal.

I'll take that.

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