New to this forum
 

Hi Everyone,

I posted on the new person forum and Glenn and Chemar invited me here. I hope I don't annoy anybody by giving the details of what's been happening with me, I just think it might be able to paint a pic for everyone.

I have been dealing with this since 9/17/06, my family and I were out shopping all day and then stopped to get pizza on the way home. After we ate I told my wife I felt dizzy and proceeded to get worse during the 10 min. drive home. By the time we got home I was really feeling dizzy and light headed (kinda like being drunk w/o the alcohol) while I carried our 2wk old daughter to the back door of the house I told my wife "this isn't good". My wife grabbed the baby and I collapsed thru the back door. My wife took me to the ER and after 6hrs they diagnosed it as Vertigo, gave me Rx for Valium, put me off work for 3 days, and sent me on my way (Kaiser Medical at their finest). While I was going to the ER & while there I was extremely dizzy, ringing in my ears, chest pain, and shooting pains in my left arm and left leg. ER did EKG and chest xray and after my wife argued with the Dr. he reluctantly agreed to do a CT Scan. All of these came back clean.
A couple of days later I went to urgent care because the dizziness was so bad, the Dr. did a urinalysis and referred me to a Head and Neck Specialist, Neurologist, and for a hearing test. Hearing test is fine and H&N Dr. says to keep taking the Valium, stay out of work and come back in 3wks. Still waiting to see neurologist at this point.
I finally got in to see my PCP after 10 days and he ordered a huge battery of fasting blood tests, MRI of neck & brain stem, and Cardio Stress Test. All of these tests came back normal.
A couple of wks later I saw the Neurologist who put me off work for another 2wks, tells me to stop taking the Valium (but doesn't replace it with anything else) and gives me eye exercises to do at home.
Go back to see the H&N Dr. (at this point it's been a mo.) who tells my Wife and I that it is not Vertigo and is definitely Neurological. Wants to let the Neurology Dept. take it from here.
Go back to the PCP who puts me off work till 12/11/06, refers me to a new neurologist, orders a MRI of the lower spine, another huge battery of blood tests, and Rx's for: Vicodin, Neurontin, and Relafen. MRI and blood tests come back normal. He also refers me for a sleep apnea test. I haven't ever been able to get the results of that test.
Go see PCP again on 12/10/06 he says the first Neurologist diagnosed as Polyperipheral Neuropathy and that he concures but wants the 2nd Neurologist as a second opinion, he puts me off work till 3/11/07 and says to continue meds.
Go to 2nd Neurologist who concures on diagnosis and orders a LP and blood tests which finally come back clean on 1/25/07, Thank the Good Lord Above no MS!! I will go back to see him on 2/23/07 to start a treatment program. He is talking about starting out w/ steroids.
As of today, I still have the dizziness (now in spasms more than all the time), pain is in both arms and legs but primarily in the left side(loss of muscle mass in left leg & loss of grip strength in both hands), constant ringing in my ears
(Neurologist thinks it's inflammation of the nerves behind the ear drum), Severe fatigue that keeps me from doing a whole lot, Severe pain in my left hip while walking & especially climbing hills or stairs, Hard time sleeping at night due to burning in legs. Some days are terrible & some days are Good!!
Looking forward to starting treatment, but cautiously optimistic. I have always been a go getter!! I'm the Safety Mgr/Asst. Operations Mgr for one of the largest lumber yards in No. CA. I'm used to going to work at 3am and most of time not leaving till 6pm. It's been really hard to feel this bad most of the time. Sorry I'm so long winded, but it sure has felt good to get this all out. Thanks to anyone who has the patience to read this.

Roper0866

Some thoughts.
 

Doctors often say tests are "normal" because they believe patients have no ability to interpret them. Worse, sometimes there are flagged abnormal results that doctors ignore/dismiss. It's a good idea to get copies of ALL your lab results for your own records, and so you can bring them to any new doctors you will see in the future.

It does sound as if, given the acute onset, you may have had a viral or autoimmune molecular mimicry attack selective to the small-fiber nerves, which underlie autonomic functions as well as the sensations of pain and temperature. These are not easy to diagnose, as most of the usual tests of larger-fiber nerve function won't show it, and you would need to get specialized testing (and I sympathize with those on Kaiser who have such trouble trying to get such testing).

Take a look at this:

http://www.neuro.wustl.edu/neuromusc...andysautonomia

This condition, pandysautonomia, is almost like an autonomic system Guillain-Barre syndrome: acute or sub/acute onset, viral/bacteria prodrome, full-body symptoms.

This is only a speculation, of course, but I would start questioning the doctors and mentioning the term; "polyperipheral neuropathy" is only a catch all term that means many nerves outside the brain/spinal cord are under attack; it's not specific as to etiology or prognosis. And I'm hoping you can find a neurologist who specializes in neuropathy, as not all do (and many have only a passing familiarity with it, and are unaware of the many causes/presentations/tests that might be involved, or of potential treatments, such as immune modulating agents like IVIg).

Hello..Roper...
 

I have some questions for you, if you don't mind. Your story brings them to mind for me.

1) how old are you?

2) how long have you worked 15 hr days?

3) Do you have allergies/sinus issues?

4) are you exposed to chemicals in your job? Fumes from machines?

5) What kind of foods do you eat?

6) do you have a history of sports participation? Contact sports.

7) do you drink alcohol often?

8) do you catch viruses/colds often (since you have small children)?

9) do you take any prescription drugs for other reasons? Like for blood pressure or cholesterol, or allergies?

So far it is unclear to me if your vertigo started exactly the same time as
the pains you describe. Patients with real vertigo (which is often a sign of
Meniere's disease) can typically lie on the opposite ear (the one not affected) and the dizziness will lessen. I am surprised you were not given Meclizine at the ER. The Valium suggests they thought you had "anxiety". Valium can be used but typically only when anxiety is suspected with the dizziness.

Some virus infections begin with lightheadedness. True vertigo is extremely severe and not really described as lightheaded.

Did you see an Ear/Nose/Throat specialist? ENT? Did you have fluid behind the ear drum? Did you have an electro- nystigmogram?
Did you have autoimmune blood tests? the various Ig measurements?
C-reactive protein, or homocysteine? B12?

Extremely low B12 levels can
cause confusing neuro symptoms that defy diagnosis. You should have B12 run ASAP.

Peripheral neuropathies often have numbness and tingling present as well.
You don't mention that. And those two symptoms can creep up before more
dramatic ones show.

I'd also consider a neuromuscular doctor. With muscle wasting? Do you have weakness? Can you still work?

These are some of the areas your post does not clarify.. So I agree with Glenn, get copies of your tests.

Working thru a....
 

"managed care" plan can be super hassle...

I found this site map for Kaiser SoCal at http://members.kaiserpermanente.org/...p/entrypage.do
If you're NoCal click the teeny box top left- You should be able to use this to get a handle on prolicies and procedures to expedite the testing you may need. Most plan offices have 'patient services' people who can help [or not] you navigate it all. Talk to such a person ONLY AFTER you get copies of tests, records, films etc...and ask them about seeking a more specialized second opinion at some area teaching hospital participating in the plan... That way, you've got your 'records' in hand, and may have someone to help you get some plan coverage for such an exam. At least, you will find out more than you ever wanted to know about 'in-network' and 'out-of-network' processes.

If you can spare the time do so ASAP. Or make the time ASAP. Get your records first tho... I urge you to do it soon, as actually getting any neuro appts usually requires anywhere from a one week to 4 month wait for the real Initial Visit. The sooner you do all this, the sooner you can get back on track with fewer surprises or set backs.

Let us all know how you are doing! - j

Hi Roper,
I am coming out of left field here, but do you handle a lot of western cedar at the lumber yard. A couple of years ago I was making music boxes from cedar and came across a warning put out by the state of California concerning cedar. I no longer have the article, but am doing searches for cedar poisoning, came across a pay to read article concerning cedar illnesses in Canada. Do you have any problems pertaining to your skin?

LANNY, here's some info I found concerning CEDAR
 

This is a question that was posted on the Bob Villa website:


I have just finished cedar lining a large closet where I did a lot of sanding and sawing. Now a friend of mine tells me cedar dust is very harmful to the human body--"just a couple of levels below hemlock", to use his words. Does anyone know the facts about this. Thanks

Now here are the replies:

Reply No. 1
It depends what kind of cedar you used. Red cedar causes sensitivity in more people than white cedar.
Cedar grows in wet ground well. One thing that it has to adapt to this environment and fight the bacteria that would rot it out while still young is that it has it's own aromatic oils and some toxic compounds. cedars that grow in jungle areas of the world have more of these than those that grow in colder, drier places. These are the toxins that keep cedar fence posts from rotting and that make a closet smell nice while repelling moths.
If you didn't have a reaction to the dust while actually doing the sanding, you have little to worry about. Most woodworkers who create cedar dust learn eventually that it is good to wear a dust mask.
I have quit using Port Orford cedaar very much because it has irritated the sinuses of my crew members and it landed me in the hospital with a lung irritation that gave me symptoms like a heart attack, great pain with every attempt to breathe in.

Reply No. 2
Ouch! I know that feeling, had it with drywall dust, gave me flu like symptoms and made me sick for weeks. Another wood to watch out for that is extremly hazardous is ebony, its dust has the same properties as asbestos, and proper precautions must be made when working with it.

Reply No. 3
It's interesting. In some tabloid type magazine, I came across an artile saying that twenty substances were just added to the official list of things that are know to be able to cause cancer. it said, "some kinds of wood dust like cabinet makers use" but failed to let us in on the big secret.
----------------------------------------------------------------------

This is about the best info I could find on the internet relating to Cedar Poisoning.

Take care
Melody

Mostly I want to second the strong suggestion that you get your records. Not only do you need to have them, what they contain or don't contain may surprise you.

Regarding B12, please see my website (link below). The B12 test result may be normal (and in rare cases even quite strong) in spite of actual deficiency in the tissues where it must be do to any good. It would be unusual for symptoms to come on new and fast, but it does happen.

MS is not ruled out quickly, and one of the differentials is B12 deficiency, although you wouldn't know it by the way most doctors practice.

Both B12 deficiency and MS can cause serious problems before lesions will show on an MRI.

rose

Thanks for asking, here's the best answers I can give:
1) 40, 2) approx. 15yrs, 3) no, 4) occasionally, 5) meats, vegetables, fruits, etc..., 6) In HS football, track, basketball, and rodeo, 7) was an alchoholic until 1994 when I quit drinking completely, 8) prior to '06 almost never but came down sick alot in '06 just chocked it up to the kids, 9) none; They did give me meclazine also I forgot about it. At Kaiser they call the ENT a Head & Neck Specialist. No to the other tests, they did a B12 with the spinal tap. I do have pins & needles sensation and my arms go to sleep a lot w/o warning I thought I put that in the posting but I missed it somehow. Probably because of my hen-peck typing haha!! I have some weakness in my left arm, left leg, and in my grip strength in both hands. I haven't been able to return to work mainly due to the fatigue. Some days it's really a chore to get out of bed for any length of time, also I limp pretty bad because of the severe pain in my left hip. We've been trying to get copies of my test results for some time now, unfortunately Kaiser can be a real hassel to deal with. They're like trying to work with the federal gov.
Thanks again for your response,

Roper0866

Thanks for answering the questions...
 

Do you take any supplements?

Did you have hip pain, before eating the pizza?

Did you have an xray of the hip?

People with alcohol consumption histories often have metabolic issues with
Thiamine B1.

I'd get that B12 level and report it here. There is a difference between B12
in the spinal fluid, and the blood serum. Your post doesn't clarify that.

If you are exposed to fumes from machines alot, there can be carbon monoxide there. This can cause diffuse neurological poisoning. If you smoke, you add to it.

For now you can yourself, take some nutrients. You can start with B12 1mg
methyl version, and a quality B-50 and see how you feel.

You may have a degenerating hip. (from your active past). That should be evaluated, since necrosis is a slow process and shows up years after
the sports/other activity. Sometimes many things gang up and happen at once, and it is hard to separate them.

I think you should see an orthopedic specialist for that hip and potential neck symptoms. It takes time and many tests before things get identified.
With your active past history, looking at structural damage should be
done.

When nothing is found with dizziness they often say a virus in the inner ear.
That would not however, cause your hand/arm/leg issues.

The diagnosis of benign positional vertigo is common. There are websites you can search, to show you head positions to do to help realign the little otolithis that are in the semi-circular canals. They can move around and cause dizziness...
you can start here:
http://www.umm.edu/otolaryngology/bppv.html

Hi,
Sorry it's taken me so long to respond, I was having a hard time getting some of the test results. So far here's what I've got for answers to your questions:
1) I take Centrum Plus and have faithfully everyday for 12yrs ever since I stopped drinking. 2) I didn't have any pain in my left hip prior to that day, and in fact the hip pain came on slowly over about 2wks time and has remained ever since. 3) No, I haven't. 4) Here's what I have re: B12 tests
12/18/06 B12 - 347 pg/ml 1/04/07 B12 - 346 pg/ml. these were blood serum results according to Kaiser. 5) I don't smoke and have never smoked. I don't believe that the hip pain is structural since I have never injured that hip or had any pain prior to this disease. I got the results on several other blood tests that have been done and will post them shortly.

Roper0866

Here's the test results I have gotten so far, these were all taken
on 12/18/06:

Creatinine, Serum - 1.38 mg/dl
Ferritin - 346 mg/ml
Glucose, Random - 88 mg/dl
Iron - 124 ug/dl, TIBC - 284 ug/dl, TIBC unsat - 160 ug/dl
Transferrin - 44%
Potassium, Serum - 3.9 meq/l
Sodium, Serum - 142 meq/l
CBC w/o Diff : WBC - 5.0 k/ul, RBC - 4.89 m/ul, HGB - 14.4 g/dl, Hemotocrit - 40.4%, MCV - 83fl, RDW/RBC - 12.6%, Platelets Count - 199 k/ul.

I'll post more info as I get it from Kaiser. Trying to get info fropm them is like pulling teeth!! haha!! Thanks again to everyone for your help!!!

Roper0866

I hope that ferritin isn't ng/mL

I don't have the other ranges in my brain.

They should give you a copy of the actual labs, with the "normal" ranges and all.

rose

yes, I agree with rose...
 

you really need to see your results compared to that labs published ranges.

But just off the top of my head:
1) your kidney creatinine is high...rather high for a young man and it is almost out of normal range. Some labs cut off at 1.3, others at 1.4. so you need further kidney tests to see why your creatinine is elevated.

2) Your ferritin is high too..and should be further investigated.
this site gives causes:
http://72.14.203.104/search?q=cache:...lnk&cd=1&gl=us
http://www.ksat.com/encyclopedia/6859951/detail.html

3) Kaiser had a screening program in place at one time for hemoachromatosis.
This genetic disease causes arthritis, and organ failure as the iron builds up
in the body. A genetic test would the the logical next step for you to rule
it out. hemoachromatosis is not that rare.

4) Your potassium is in the low normal range...almost out of normal however.
You should be selecting foods high in potassium. Low potassium can be
due to renal tubular acidosis, and with the elevated creatinine...well, is a
warning to have further kidney tests run. Low potassium presents with weakness and fatigue.

Thanks for the reply,
I'm in the process of getting my medical records from Kaiser but it's going to take 4-6 weeks to get. I'm going back to see the Neurologist on the 23rd and he's supposed to begin my treatment plan on this visit so I should have alot more to post at that time. I did go back and check though, and my PCP Dr. did do several other Iron and Hemochromatosis tests and he has ruled it out. Of course that doesn't mean he's right. haha!! I will post the info on my new treatment program on the 23rd.

Thanks - Roper0866

Rose,
You had posted something back on pg 1 that really stuck with me. You said the symptoms usually don't come on strong and new (not an exact quote) but it does happen. I've given that alot of thought and I was feeling very fatigued and tired for at least a year prior to this happening. I've been working 12-15hr days 6days a week for many years so I just chalked it up to needing sleep and a vacation. Maybe this has been going on for a long time and until the severe dizziness I just ignored it?? What do y'all think??

Roper0866

Hey Everybody,

I'm going back to see the Neurologist on Fri 23rd to find out what my treatment plan is going to be for this disease. Dr. had said the last time I saw him (spinal tap on 1/4/07) that he was going to want to try steroids for me. Has anyone taken these? does it work? what are some of the side effects? The fatigue and pain are the main symptoms keeping me from working, is the steroids going to help w/ the fatigue and tiredness? Just thought I'd get some opinions before I go see the Doc.

Thanks - Roper0866

Medical Records
 

I realize that the Kaiser systems is a law unto itself (so big, and so in bed with so many politicians), but a patient by California law is entitled to a copy of medical records within 15 days!

rose

Yes, subtle symptoms often are mistaken as "new" when they worsen
 

That is soooo common. B12 damage generally is subtle for a long time. So subtle that we do not realize how many problems are due to B12 deficiency until they begin to improve months or years down the road.

It is common with this deficiency to see a symptom as "new" when it becomes obvious.

rose

Try doing what I do....
 

Just as the neuro thinks he's done, ask him for a copy of the test results then and there...Bet you'll get it almost right away...[doc gives it to a staffer who goes to the copier --taking their time of course]. I find that if I do this in the offices that usually charge for such things...I don't have to pay.

It's got two-fold value...you get it right away, and get it for free. Worth a try, anyhow!

Good luck! - j

Absolutely. And that is an important thing to do for another reason: many times some of those lab results (and much else that should be in a record) will not be in the copy of the entire record. Best to collect as much as you can as you go along.

rose

labs
 

If you go to www.lizajane. org, I've posted lists of lab tests with most of the normal values. You can just download a chart into a excel, and fill it in so you can see where you are, and then, you can keep track of changes.

If using a spreadsheet on line is difficult for you, you can down load and then print out the sheets, and fill them in by hand. I've got all the normal values, or ranges, for most of the tests you've had on the site, so, please take a look.

If you need help, just say the word.

Thanks dahlek I'm going to give that a try. I need to try something to speed up the process.

Roper0866

Thanks Rose,

Unfortunately I think Kaiser gets to make their own rules as they go along. Lucky for me my employer has a Long Term Disability Benefits policy and that insurance co. has joined the party looking for answers. I don't know if it will speed up Kaiser, but I'll take all the help I can get. I'll let you know what happens.

Thanks - Roper0866

Thanks LizaJane,

I've got excel on my laptop so I'll get on there tommorrow and download it.
I've used excel quite a bit so I don't think I'll have any problems (famous last words, huh??) Thanks again it will be nice to be able to see where I'm at when I get these test results.

Roper0866