Here is a short version on them:
http://www.massgeneral.org:80/neurol...opsy/index.htm

I have to tell you, and you can find longer posts if you use the 'search' feature on the top blue bar and search 'biopsies'.... that I had one neuro who WANTED to do a full sural biopsy on me- I declined in no uncertain terms!...

I did web searches up hill and down...and what I found was: Sural biopsies and punch biopsies only PROVE that there is damage. How much real damage is determined by HOW GOOD the biopsy labs handle and test the 'samples'. Pain and damage from such biopsies can often be worse than not having them at all..and if the samples aren't done absollutely perfectly, the pain etc. is for naught. Many insurance companies [BC/BS, Aetna, Humana and a few other biggies] do not any longer cover the costs of Sural Biopsies and list the various STEPS [very much in line, but less elaborate] similar to all the test options on Liza Janes Worksheets. No Kidding. The diagnostic processes for CIDP include about 15-20 tests, bloodwork, MRIs, and Nerve conduction studies... I met, according to my insurances' policy practices...the 9 out of 10 rule. That sure was enuf for me...I'd done all but the 'sweat/tilt table' test. I think I grateful I 'missed' that one?

I essentially declined to have a sural biopsy done for the following reasons: 1-It could damage more nerves -I very much like what few I have thank you!; 2-It only confirms absolutely, what other testings indicate; and 3- this particular neuro was TOO DURNED eager to have a go at it! [Which reads, in my book -HE wanted to DO ONE! ON ME! I do NOT like to be a professional guinea pig]

I wish BobB/Nide44 would pop in and pipe up, as he is a proponent for the 'Punch Biopsies' done at Hopkins...and I would accede to one of those to only confirm what all is going on w/the small nerves.....
If you click on the Mass Gen indexes at the top of the page, you will see that the paperwork and justifications of all this stuff is NOT done lightly. And, the 'punch' is far less invasive than the other option [now considered 'dated' by those WHO PAY].

Melody, lots of folks could say a lot, but probably only in the 'shadow profile' type of approaches...after all we STILL have to go to docs? I don't know about you, I SURE do NOT want to be marked as a 'trouble patient'?

Lailavia, I hope this all helps you get thru all the frustrations that go with all this STUFF! MOST important that you get some ANSWERS! I truly hope you DO get answers. That's always the bestest part. - j

you intelligent creature whoever you are! You sound quite amazing. I am amazed at the amount of intelligence here....too bad some of thee didn't become physicians with degrees! Sigh...I am worn out now...but thanks for the insight all the time....I had another "dud" appt. today with another "dud" doc....its simply amazing. Too tired to even start up. I am thankful for the "gems" I do have....and this JH doc was supportive of the fact that JH would be the best place to have this biopsy read, so if they can just get it right....my husband veiws the report a bit different than me. I think the fact that he Lumped "all my sx" ( All what sx?) into being pyschiatric put me over the edge. All I went there for was fatigued arms and he took it upon himself to combine my previous visit and all my problems into one big pot of "medical slop". Sorry I am really tired. But I am still walking and talking and I will slowly move forward, I can see some here are in much worse shape. IN some ways. Maybe my a.m. problem in anxiety attacks...everyday....then will someone please help is what i will say...again...and again....Sweet dreams everyone!!!!Youre' the best!

You know I was thinking about how your doc treated you and how your psych you said has no idea what to do with you. Anyhow I bring this up as I have had the same issues because I was a hard case and I think there words to me was out of there frustration. I think when docs of any kind don't know what to do with us or were harder then average to figure out they turn it on to us rather then pushing a little harder. I have had many docs in my anorexia recovery give up on me and it made me feel lost and like a "freak" but when I found the right docs that were willing to give me hope and work harder then they may for some did I recover. I tell you this story so you don't give up. Not all docs are for everyone. If your current is not helping then try a new one. It may give you the hope and answers your looking for. Good luck.

Laila, there are some very good reasons for NOT worrying about getting a name to put on it all; the name will probably not be helpful, and will probably not lead to any useful treatment.

You have fibromyalgia, and you have migraine. People with migraine have lots of little spots on their MRIs, which are called increased areas of increased intensity. Used to be called UBOs, now are called WMLs. I have them. My rheumatologist has them. I've spent the last several weeks reading about them, and the causes are migraine or vasculitis. If you don't have vasculitis, it's migraines. Vasculitis would be obvious from the tests and exams you've had.

So, we have to live with these little spots, which do not seem to indicate harm.

Also, fibromyalgia which persists a long time is associated with neuropathy. So, you HAVE a cause for your symptoms, with or without abnormal nerve conductions or a skin biopsy. It's pretty common. It may be that areas of swelling and pressure from inflamed tendons and trigger points deny nerves good blood flow and nutrition. If you get the fibro under better control, I'd bet the neuro symptoms will improve.

That leaves the issue--how to get the fibro and muscular symptoms under better control? A rheumie ought to look for sero-negative arthritis like that of psoriasis. That often causes inflammation to tendons and lots of little problems thata feel like big ones. Also, your spine. You don't want arthritis pressing nerves and causing damage.

But what I recall is that the things that help fibro most are myofascial massage---deep work on all the trigger points, and aerobic exercise.

My guess is if you take all the supplements recommended for neuropathy, and hceck what's recommended for fibro, get exercise, and manual treatment on your hurting spots, that's your best shot at getting improvement.

Oh, you definitely do not have a picture looking like MS with findings of migraine of MRI. They are very different. I've just been through this chat with several doctors.

Also, not CIDP.

But if you read fibro boards, I'd bet LOTS of people look like you.

Oh, and the orthostatic hypotension---my cardiologist--yesterday---there's no reason to try to put a name on it, he tells me. It's not really a nerve disease. There's a continuum in how quickly and accurately people's autonomic nervous systems respond to the world's demands on it. Some are wired hard, and they get axiety and palpitations; some are slow, and they get dizzy and depressed and feel weak with changes in position. And it's just part of who you are.

So, I've been seeing a myriad of doctors, all saying to me what I am saying to you now---it's time to focus on healing, not getting validation with a name.

Hope this helps. I do think you can feel a whole lot better. Really.

LizaJane has said it all and said it superbly.

Having a 'name' is comforting in that IT has a name, it doesn't really need to have one. Most important is getting the right treatments! I think from what you've said the docs aren't giving up on you...they're just stumped. As long as they're stumped they will keep at it - Hopkins is well known to be that way.

I tho would never EVER want to be a doctor! Imagine....seeing 30 +/- of US each day? Nope, NO way! - j

Beta blockers can cause constriction of bronchi. People on meds for asthma for example don't take beta blockers. I assume that applies to COPD, but I admit I didn't look it up.

I suggest a good going over of meds and side effects and interactions and trying to obtain a baseline of symptoms.

Liza and Dahlek I think you have probly hit the nail on the head....I am so exhausted from trying to find the problem....when I see that Liza "sees" me like she knows me.....are you psychic?? I think the reason I pressed for more answers was the sudden onset of arm fatigue last fall after many years of steady pain...and also TOS like sx which will probly be impossible to get dx of either...I think I will start trying to do good things for myself with vitamins and food, spiritual, etc...maybe be a little more agressive with the POTS and just let it be unless I fall on my face. I stood on my feet for 7.5 hours today and made 280 bucks helping at a food booth at a fair today.and last night....yep I made it even though I feel like I got beat up. Don't tell anyone....but I did it! Me and hubs to try and pay our 600 dollar summer electric bill and my 1000 doctors appts! Thanks and my tests are this week so i will update on it all...I need to go lie down!!!!!!

That is GREAT! And, of course there will be pay-backs! After all, when was the last time you did that? DO/DID-that was in the vocabulary...CAN'T wasn't.
Of course simpler said than done. Attitude is the best medicine here.
Something to try is to build up your endurance and strength to continue to do similar things in the future, just pace yourself?
I have to admit, that I had been cautious about starting the vitamin/supplement routes and I've made some big mistakes along the way. In the end tho I've learned from the mistakes. the benefits are there and certainly cannot hurt- when applied prudently.
Diagnosis with neuropathies seems to be one of getting into the right 'neighborhood' and treating for that set or sub-set of problems. Don't forget that Thyroid, spinal, immune and about a zillion of other medical issues overlap-masking, disguising, and muddling any clear cut cause/effect diagnosis. Treatment is more cause/effect in that any given medication or therapy that has good effects is the end goal.
But finding causes? Sometimes, tho rarely, it's straightforward, mostly it is not. Remember we are people and we do not live in controlled environments as lab rats do.
Polite persistance is the stand most of us here have to take just to get seen, tested then maybe treated. We learn and learn to live - because of and in spite of the neuropathies we have.
Bet you are really achey now tho? I know I am when I've 'overdone'! Good thoughts - j

it was on September 19 boy what an awful day for me. I didn't sleep a wink I guess due to nerves and then started with really bad da da da diareahea!!!!!!!!I just couln't cancel it too much hassle. I couldn't take my am xanax got up at 5:00 am and got there in time by 7 it took forever to get the tilt test going! Finally did that, felt so sick....like I was going to literally start screaming....then there was no reaction so they did the iv thing and my heart was pounding like mad....stood strapped to the table for an hour, it took all my will power not to have them stop. I just didn't want to repeart it! the first one I had was so much better cuz I wasn't sick! They said it was negative for POTS but the NICE cardio doc said probly cuz of being on beta blockers and just missing that morning would not affect it. However he does want me to have an imaging stress test...AND said my a.m. sx were not necessarily caused by anxiety! He said "what makes you think that?". Why can't he be my doc????He was just the attending doc (though a professor) in the heart lab that day. So now its something with CT segments dropping without chest pain .....and he recommended me to a good cardio closer to home....Then I had the skin biopsy, still waiting for those results, she did 3 punches, thigh, knee area, and near ankle. So I don't know why I didn't sleep at all like that...but I am now having left arm pain (doc says cubital tunnel) feels like more too, and burping and heartburn all of a sudden! Every week its something new and exciting! My computer crashed and burned and I just got set up with a new tower thingy. It is skinny and I could only get Aol vista whatever that is but is is slower than my other dial up. I missed it so much!

Ok, well I am glad thats done and will just go from here, have appt with cardio set up. Off to read some other posts!

thanks as always for listening!