My skin biopsy was negative
 

The one done at John Hopkins, as well as the tilt table...though the doc for that was great and said my beta blockers probly threw it off. My neuro doc called me while I was in grocery store, and said there was nothing else he could do for me. The one from Hopkins ,who said the "bulk" (?) only one being morning tremors (thats what they call them) that I could see, were probly psychiatric.

The Heart doc does want me to get a stress test due to some problems with ecg at tilt. He said "why would you think your problems were Pyschiatric" and seemed me to want to push for more answers, I wish he was my doc. I asked him how and he said "well they need to do more testing."...well who does and How do I get more? I have had so many tests the insurance comany probly had to hire a new employee just for my paperwork!!! I guess I am glad they may have found something cardiac that may be causing some sx....he also recommeded a doc for me and I have an appt set up. Kind of sad, to have to be glad a sx was found!!!!It sounds really weird but I hope you know what i mean....I have pushed and shoved my way for tests for years and have come up with nothing .....just more and more problems....

I am going to give up on things for now. I don't know what to ask for anymore, I don't know if my problems are neruological or not, but I do not that my arms are weak and can't sustain activity. I told him I would let him know if i got severly worse and that was that. I am thinking of calling back and seeing if he even knows I have fibromyalgia so that he doesn't write some dumb report up again. If it is all from fibro so be it. But why get so bad all of a sudden after so long? Oh I was dx with low Vitamin D which can cause muscle weakness, so who knows, maybe those supplements will help!!!! I guess I will wait till I fall on my face till I look further. I am too wiped out to even try anymore. All my endocrine bloodwork was great too!

Except adrenal gland still suppressed so still on cortisone, which is making me deathly depressed. She just changed me to dexamethasone in hopes of helping a little. Still thinks that is from epidural steroid shots. I am not a happy camper. if someone could just help me with the awful morning shakes and weird things I could deal with the rest. Maybe the cardiac testing will help show something. So it is good I had that tilt test. I expected more from Hopkins somehow, maybe a referral to another specialist, I really feel like I am dying when I wake up.....but then again....lets wait on cardiac tests....it feels like I am having a seizure or stroke or some kind of attack....there is no way to explain obviously............as I seem to be the only one on this planet with the problem!!!!!!!! Sorry but I am really bummed. I'll get better....the cortisone stuff has got to go!!!

I'd like to tell you
 

that I also have that shaking feeling in the morning before I get out of bed.it wakes me up,and I think I am having heart pals or flutters,but I am not sure if I really am.

I started taking CoQ10,and it has really helped. I don't know for how long it will keep working but it's working for now. Please don't feel so alone and discouraged.if you have one caring doctor that beleives you that is worth more than 10 average ones.

I have also had my share of useless thoughtless doctors. I think some of them just stopped caring somewhere along the way.

But the sahking was exactly how you described.I even thought it may be coming from my brain or spine,I just don't know sometimes.

Since that heart doc was good could you ask him who he could recommend as for more docs? The shakey maybe something from the heart and the arm issues.So maybe that test will give you more answers. I know how frustrating this is cause I have a lot of unknown as well. I'm sorry your feeling so ill but maybe if you call back that doc to get some more docs that he may work with. I know we have talked about team approaches and how they are hard to achieve. I will also say I have been to what are suppose to be great hospitals such as cleveland clinic and ucla and have expected more to really feel let down. I often feel they have so many patients they really don't work as hard as they should. I don't know the answer just your not alone.

Lailavia my dear. Let me apply my superior intellect to your problem. Your terrible symptoms that you suffer in the morning are due to one of two things:

a) Psychiatric -- you are making them up because it is so much fun to go see your neuro. Or,
b) Your NEURO IS SO FREAKING STUPID THAT HE CAN'T FIGURE OUT THE CAUSE AND IS TOO ARROGANT AND CRUEL TO ADMIT THIS!

Pardon my screaming. I think that this should put things in perspective for you.

I hope you find a good doctor and some relief. I really feel for you.

Oh thank you
 

For the nice replies! You hit the nail right on the head there Dakota....the cardio doc (he gave me his card, professor of medicine) didn't think it was pyshciatric! I will send for neuros report and see what he said and then write him a "nice" letter....he only met me twice in my life so why he would say that is beyond me. and as for the Shakes you get , Aussie 99, how long does it last?Have you ever asked docs about it? Mine can go on for up to an hour along with coughing and nose blowing. I find that if I lay down and just listen to the radio it goes away faster. Only happens when I come out of a deep sleep. I will have to get some answers for this when I get more anger or energy! It was nice having the one doc say that to me though. Never liked the other one anyway. And I am in middle of SSDI case i can't let him blow it for me by making it seem like I am not sick! YUk

It lasts no more than 5 minutes,but it's like internal shaking that seems to be somehow related to the heart. Or it may be the spine? Who the heck knows anymore. No it is not imaginary,as it has woken me up too.

As I said it has settled down alot when I started the COQ10. Getting anxious makes things worse.

You definately need to get it checked out by a doc who cares.

I also get internal shakes
 

I can get them at any time of the day, I don't think its all in the mind either.They are not pleasant at all....

Close knit neighborhood
 

Aussie I jsut PM'd you, but I figured I should post this anyway.

I did an extremely detailed genealogy of my family and got a lead. The condition I am looking at is rare and very specific to a certain country and due to their, well, how should I say it....umm, homogenous population and restricted travel and 'roots' they have managed a 'founder effect' of this one disease. I am not posting it here, as it is extremely rare and I don't want to say much until I get the chromosome tested. PN is part of this myopathy and may be the cause, along with improper vasoconstriction and vasodilation. As well, as thermal insensitivity. There are several 'founder effect' diseases.

However...I suggest that all of you check out the myopathy section of neuro.wustl under hereditary myopathies, or just in general.

Some myopathies are linked to neuropathy. You get to thinking most myopathy is muscular dystrophy, but it isn't. Greg Lemond the famous Tour de France winner has a mitochondrial myopathy.

Myopathies often are helped by some Co-Q...it is a banned substance for proathletes. Not because it is bad, but if you take a lot, it improves muscle function....it is an enhancer for pro athletes and large amounts are not allowed.....my daughter won't even take a vitamin. She has to take urine tests some times after races....and the kid won't touch a medication, not for a cold, or even after she crashed and was severely injured...refused painkillers...I told her she was nuts, as she wasn't going to bike for quite a while! But she is stubborn so no arguing with her.

If you are getting really good results from Co-Q, research the hereditary myopathies and pay very close attention to your genealogy. My neuro told me genealogy was extremely important on one of my first few visits to him...it took me this long to really pursure it past grandma and grandpa. I am glad I did, and I happened upon a condition...It may be wrong on the disease, but then again I may be right.

I have a big concern regarding the diagnosis of fibromyalgia, which simply means, fibrous tissue, and myalgia, which means muscle pain. That fibro.org site is a Pfizer site. Please pursue your fibro diagnosis beyond that initial medical sounding title. It is kind of like telling you that you have a headache and calling it 'cephalgia', so you think it is a real disease. It is medical double speak. If you have 'fibromyalgia', something is wrong, you may have a significant disease they did not test you for, as you have to get past 'gatekeeper' tests. Too many people are being labeled with that and being sold psychiatric meds for pain.

By the way, there are hundreds of hereditary sensory or motor neuropathy/myopathies. You can't just go to a doc, and say test me. You have to present a case for a specific chromosome mutation.

I vibrate in the morning in bed. Goes away gradually, and gone by the time I wake up. I always assumed it was because the neurons hit by neuropathy involve vibration sense.

one more thing
 

Other thing: I've thought about mitochondrial myopathies and I've been thinking, without real clear understanding, that for many of us with "idiopathic" neuropathy, our body behaves as if we had geneetic mitochondrial myopathy. Hear me out: Most idiopathic cases are the length-dependent neuropathies. Something is knocking out the long axons, NOT the cell bodies.
Well, the long axons are highly dependent on mitochondrial energy, and it's not inconceivable that toxins have poisoned our mitochondria. I think the way heavy metals poison nerves is through the mitochondria. There may be many things that poison our nerves this way.

Anyway, I asked my doctor to measure my carnitine, and it's very low. I take carnitine supplements and CoQ10. I'm not sure exactly what they are doing, but even though I've had lots of health problems over the years, my neuropathy is still much much better than when it hit me in 1999. I consistently have an ankle reflex now; that took 7 years to get back, but I got it.

I have diffuse small fiber symptoms now in a way unlike what I had originally---I'm getting weird sensations in my fingers and skin, even face and scalp. This feels like something different, and my neuro thinks it is. I still have my ankle jerk, despite this.

So, what I'm rambling to is this: maybe many of us with idiopathic have depressed mitochondrial function, whether we inherited it or not.

Lailavia? To me it sounds as if.......
 

what all that's going on with you is not exactly what YOU or the docs THOUGHT is going on with you? If it is Endocrine-related...that could be a good thing, tho having thyroid issues myself I can assure you that 'fixing' things takes a LOT of honest communiction with your docs and a heap of 'tinkering'...If you read sites such as:

http://thyroid.about.com/z/js/o.htm?...e_Diseases.htm
and
http://www.endocrineweb.com/
These are complex processing organs in our body...they affect/effect just about everything?
It sounds as if the neuro docs have come to 'some conclusions', but the other docs haven't-so it's not a complete loss...DO NOT LOSE FAITH! Hopkins IS a place that looks at the WHOLE BODY/person and not the pieces....It's obvious that you are on a very messy, bad road to getting any diagnosis, but I believe that you will get one that can be dealt with..'
While I never felt that getting a whole slew of tests was the best way to spend my 'days off'? It ultimately will be THE best way to help you for the rest of your life!
And, don't forget, When THEY ask you about 'are you stressed?' Reply calmly, Well, yeah, I am, but then I can't walk normally, do basic housekeeping, hug my kids or grand kids [whatever?], Cooking is an issue of disinterest [probably the meds?] and well...wouldn't YOU be 'stressed' under similar circumstances? I believe it's part of the 'territory' in dealing with chronic pain! LET THEM KNOW that you have sorted that part out! Now urge them to TEST away! YOU want to know what the fruitcakes is going on!

Go get them tiger! :hug:'s in heaps! - j

cycleops,
I'm wit'cha on the 'fibro' issue. I think its a catch-all that is a precursor to
"I'd rather be fishing for trout than take this one on' -- i.e.they don't wanna have anything more to do with you.

On the other issue, there is a genetic link
to Immigrant Middle European Jewry, (esp.after WWII)
as a hereditary clue for PN.

Hi there
 

I have been away visiting my Mom and am still on the cortisone so I am not feeling so well. I begged the doc to go off it but she said it would be too dangerous as my levels are too low. I didn't take it one day and felt so good. I can't stand this. The endocrinologist still thinks the adrenal suppression is from the epidural steroid shots. (IN JUNE) I have called several times saying how depressed and horrible I feel and keep being told I have to stick it out. They are moving up the ACTH stim test to middle of NOV. And they ran a slew of tests, nothing has come up abnormal! So now what?

On another note, I sent for my biopsy report, and it says the nerve fiber densities at all three sites are within normal limits although the distribution is patchy.....some segmented and fragmented fibers are noted....though there are no significant morphological features to define a neruopathy processs. Then is says a repeat biopsy is recommened in 12 months. what does all that mean? maybe I should start new thread? and why didn't the doc tell me that????????? All he said was it was negative goodbye.

then I went for my flu shot and also cause have noticed a dark dent on nose and now doc sending me to rule out wegeners, though I doubt my rheumy will even do a test.....and I completely forgot to mention that I still have the morning problem its like my brain has gone dead. My doc seemed standoffish I am probly paranoid but they are making me feel like a freak.

Dahlek, she ( the endo doc)ran tests on pituitary, an adrenal mri, hormone tests, and others.I don't know what to do anymore.there is a piece of the puzzle missing and now one can find it or seems to want to. I went to a heart doc and she scheduled a stress test, anther echo, and another 48 hour moniter....I had to push for the stress test even though the doc from hopkins recommended that. Whew!

On another note, I heard that a decision had been reached on my ssdi case, but my case was sent to the quality review board, so I really don't know what is going to happen. Was I approved? Will they reverse it? Blah. Can't wait to get off the cortisone.....but if it wasn't the shots, what is left to test? I have gained 12 pounds which I had just lost!!!!! Worse is this depression....thanks for listening. I am at a loss again. My legs have really been hurting from my "fibro" which my neuro does not like to acknowledge....like someone (sorry don't have your name) mentioned above, there is probly something else wrong but what?

Peace..........

lailavia--
 

--is it possible to post what was said in the skin biopsy report, including the intraepidermal reference ranges?

Form what you just posted, it sounds to me like there may be evidence of a nerve degeneative process, but often, doctors not really versed in this only look at the reference ranges for nerve fiber density, which were originally codified at Johns Hopkins and sort of arbitrarly designated as "abnormal" only below the firth percentile and above the ninety-fifth percentile, and while this may make sense from a statistical standpoint, there may be other morphological evidence there--comments on the condition of the nerves, whether there is swelling, overbranching, etc.--that might point to an "abnormal" results.

The idea that you should have another in 12 months certainly sounds like there is some evidence of SOMETHING going on.

Also, where was this report produced from? (I don't trust the pathology findings from places where this is not done regularly--and that sort of limits it to Hopkins, Cornell-Weill, Jack Miller, UCSF, Mass General, Jacksonville Shands, maybe a few others).

Re: biopsy
 

Thanks Glentaj,

I will dig out the report and post those numbers tomorrow i am just too tired now, had my dear granddaughter today and just getting some computer time.It was done and read at Hopkins. Thats why am a bit dumbfounded as to how fast this doc wanted to get rid of me....unless he didn't see the part of repeating in 12 months?

Re: Biopsy
 

Ok I still do not have the energy to go get the report and type in numbers! I have been tutoring my daughter, she is doing a 12th grade online high school course and needs lots of help, and it is like a full time job. I can barely keep up with anything but at least she will graduate....we have been struggling for several years with home schooling and high school problems....I need to get her thru this before I completely fall apart! I will be back!

skin biopsy
 

What my neuro told me is that sometime the demage in the nerves can't be seen in the biopsy since the demage is on the molecular basis - means that there is a problems with the channals in the nerves membrane.

Liza Jane - what you are saying leads to the conclution that most of us need to take CoQ10 in order to improve the mitochondrial work in our bodies.