What strikes me as extremely odd, is that every time Alan saw a new doc, whether it be a GP, rhemo, Neuro (we saw LOTS OF NEUROS), it didn't matter. We would sit down and Alan would tell them his symptoms and I would the say "oh, just for the record, Alan's mom had Guillian Barre Syndrome when she was 45 or so". And immediatly (and I mean immediately), they would say "oh it's not connected" (and I'm talking 18 years of doctor visits, way before I ever found this board), And I've been on this board for a few years now.

But every doctor would look and gently smile, and sadly shake their head no, and say: "His mom's GB has nothing to do with his having neuropathy", and no one ever suggested a lumbar puncture.

I mean, it makes the mind boggle, at the incomplete workup that this man has had all these past years. Even though we went from doctor to doctor, getting tests, and different opinions (and no one ever said "Oh let's do a lumbar puncture", They would just look at me telling them about his mother and the Guillian Barre and say emphatically "no, it's not connected, GB has nothing to do with Neuropathy, and you can't inherit neuropathy and then they would say "Oh, are you sure he's not a diabetic"??

And I would say "he's had every diabetic test known to man, (even Dr. Fred ran the very latest ones). "he does not have diabetes". But then he had the LP and the rest is IVIG history!!. I expect that any new doctor that Alan will eventually see (I mean we all see different doctors eventually, right??), well any new guy will just hear the word neuropathy and say "oh, is he diabetic"??


jeez!!!

Taking home photos of ones' self nude except a paper bikini, purple with yellow spots, or stripes, or whatever, strikes me as a bit more kinky than anything I expected to happen there. But I've got mine in my medical looseleaf!

Turned out I didn't sweat in my hands, feet, face, or armpits. The latter explains why I stopped needed deodorant. (there's a bright side here) They're odd people out there at the Mayo....

Ha
 

I really thought that as well,so LJ i'm glad you came right out and said
it. And Mel wouldn't doubt it,but you better hold on to Alan,because
a Dr. just might surprise him,well hold on to each other,cause miracles
do happen..Shoot that would be great. Hugs to all Sue

And oen of the other things--
 

--that is starting to be investigated as regards the high autoimmune rate for those who live at higher latitudes--both Northern and Hemisphere--is the link with low Vitamin D levels. In fact, it is speculated that a number of the mutations that have occurred among Northern Europeans--lighter skin, ability to digest lactose into adulthood--may well be evolutionarily related to the need to maximize Vitamin D3 status.

Over at Braintalk, Ted Hutchinson has been compiling an enormous database of material on Vitamin D and its link to other conditions, including cancer. The material is well worth reading.

http://brain.hastypastry.net/forums/...ad.php?t=24731

http://brain.hastypastry.net/forums/...ead.php?t=2822

yes, Vit D
 

The fact that the medical profession has latched onto this so quickly amazes me.

Why don't they understand B12 the same way?

I am still concerned that people will do things willy nilly, and take too much.
So for people with chronic pain and other neuro issues, please get tested.

I've been doing about 1000IU daily (3 x 400IU tabs from Naturemade D3) for 2 winters now. I don't take any in the summer when I tan up from being outdoors.
I had noticed that I feel and move better in summer and then crash in winter and ache more.

I have not had a D level run yet. And I am doing my light visor every day now, started in Oct. The light therapy makes a HUGE difference for me. Much better pain levels.(reduced). Less stress too. (but my job called yesterday, wanting me back---have to consider that one carefully!)

I am 55, and I live approximately 3 hours east of Mayo, which doesn't put me in Minnesota. My great grandfather is buried not far from Duluth, so I have family that settled Minnesota. My grandmother ended up on the 'Norweigan' side of the Mississippi river, LOL.

Many neuropathies are inherited.

Charcot Marie Tooth (CMT) and the HSNs (Hereditary Sensory Neuropathies) of which a new one hits the list every few months, are inherited. In addition, other diseases, which are inherited, such as Porphyria (autosmal dominant) result in neuropathy. There is a whole other category, 'Myopathies' which are named for muscle degeneration, but of which 49% can have PN. This group was at one time categorized and named into quite a few diseases by symptom. Recently, they have blown that all away, finding a variety of symptoms in families from very mild to very severe. Many of these myopathies go undiscovered because they are adult onset, median age 64, range 7 to 77. Unless the disease is severe and family realizes there is something going on, it goes undiscovered, misdiagnosed and remains, idiopathic.

Now, since the human genome has been mapped, all the diseases that used to have names are all being clumped into one, myopathy category until they sort out the abnormal protein accumulations and connect those to a gene. That will take a while.

Many people suffering from any of the idiopathic diseases, such as fibromyalgia, neuropathies etc, could, and I just say, could be in these categories of now un-named inherited neurological myopathies.

Many of them are autosomal dominant and not sex linked. Duchennes Muscular Dystrophy, a genetic, terminal illness, is a sex linked dominant disease with accumulation of a protein which they can link to a gene. There are others that are sex linked and gene linked.......HOWEVER

There are many that are not sex linked...they come from either parent, and are dominant. There are also recessive ones, but dominant ones cause the most havoc as they give a 50/50 chance of being passed on regardless of sex. To make matters more complex, symptoms vary from almost non-existant to very disabling within the same nuclear family groups.

Any one wanting more info can check out neuro.wustl. hereditary myopathies.

Again, they are rare, they do run in certain homogeneous ethnic groups. We are less aware of them here in the US as we are less in touch with extended family and genealogy past a great grandparent.

Don't expect to go to your neuro and have him act on this info....it is a really rough go to get it. You have to substantiate your need for further consideration. In other words, know a long family history, and have that history be from an affected area. Plus you need symptoms other than neuropathy. There is cutting edge research going on regarding this and it is no where settled. It only brings up more uncertainty. It is a hard place to be.

They can not do a test and say 'Yes, you carry the gene". We are years away from that.

I have always said, PN is a symptom.

A book??? Well, we will see. I don't know if I write that well.

And, I did not get to take home my pictures of me in the paper bikini...(Lord, my self esteem is bad enough-I did not want to see them!!!)

I have been in Sweden and experienced the midnight sun. We do not have that here where I live, although now and then we get some great auroras. Once when I lived 100 miles north of here, we actually ducked as it seemed they would hit us. Midnight sun does make an impression on you. Yes, I do get SAD. I have a light, and just cope. I think most of us in the northern tier states have a bit of trouble with the light swings...even though they are not as drastic here as in northern Scandinavia or Alaska. You just cope. It gets dark about 4:20- 4:15ish here...I think. I don't pay attention. It gets light around 7ish. Not too bad.

Remember when you look at the neuro.wustl site, that it is already obsolete in some of the hereditary myopathy categories. Such as Welander Distal Myopathy is really no longer a disease and it is not localized to gene 2p13. Many of those disease categories were blown away by recent research. They are back to square one.

This time they are looking at abnormal accumulation of certain proteins, they have roughly 6 to 8 and are adding more as study goes on. The diseases will come out as Myotilinopathies, Zaspopathies, Crystalinopathies, Desferlin, or Deminopathies....EVENTUALLY----isn't being done yet.

Plus there is no cure.

Plus you do not need a diagnosis of genetic disease in your family to keep people from being insured!!! Once genetic diseases are identified in families, a person can be denied insurance or worse.

This is tricky business.

I have been studying this for a while and had to weigh the risk versus benefit.

I have a risk, we have early cardiac deaths in my family, and one of these 'diseases', has that, preceeded by nonsustaining ventricular fibrillation, which I have.

Recently as September, 'silencer genes' one which turn off the disease, or allow the dominant gene to produce disease are being investigated.

This is stuff not even ready for major studies. It is cutting edge molecular biology of great minds, and I do not get the real technical stuff.

It is something to think about.

PN has a reason, some are more evident than others. There are different PNs.

All disease eventually breaks down to a molecular basis, but some diseases are evident, such as diabetes, inflammatory disease, etc.

Genes also interact with environment.

Complex stuff....most people who study this do not work with patients....a few do, or are willing to try to exhaust all possibilities. This is only a last ditch effort, and considered only because I have a history of an ethnic group that is associated with this disease as one quarter of my genetic makeup. Again with dominant genes it doesn't matter if it is a sixteenth. Dominant genes plow thru pedigrees. 72 pedigrees from my area have been identified as having variants of this disease...and that is just what one researcher identified. I have hundreds of individulas and could have a person in those pedigrees as an ancestor....then again, I may not and I could still remain idiopathic.

All this will show is what I do not have.

Potentially what I could have....if it ever gets a name, with a small chance of having something identified, and goody, there is nothing to be done for it!

Hi! Been reading the responses. VERY interesting.

Managed to get a neuro consult yesterday morning. My EMG was NORMAL, which was surprising because the last one in 2004 wasn't. Sweat test, as you probably figured out, was normal too.

The neuro's name was Dr. Joon Uhm. Nice guy. When I asked him if the normal EMG might have been a sign that my neuropathy was actually going away (and the new buzzing sensations a sign of healing), he said that Sjogren's isn't always progressive, that sometimes symptoms wax and wane with the illness, so it may not be entirely gone.

He was concerned, however, about my stroke-like episodes. I get these horrible migraines accompanied by speech and cognitive impairments and motor skill problems. I've had the most obvious potential culprits, like MS and actual stroke, ruled out, but this doc wanted to make sure we weren't overlooking anything else before we attributed the episodes to Sjogren's.

So this morning, I had an MRI of the brain with contrast to make sure there weren't any blood vessel problems or even lesions that maybe weren't there when I had my last one three years ago. And tomorrow, I'm having a heart test where they put a tube down your throat with a camera on it to look at the top part of the heart to see if there are any small holes in my heart causing problems. And they scheduled a lumbar puncture.

But when I went through all the tests in the order they were scheduled, I saw some potential problems. The last time I had a lumbar puncture, I had a spinal tap headache so severe that I vomited every time I sat up, for an entire week until I went to the ER for a blood patch. The only time they could do this was this afternoon, when I still had two tests and four consults left to do.

The other problem is that they had scheduled me for a tilt table test the day after the lumbar puncture. Not cool, being told to lie flat and rest and then all of a sudden being flipped around to see what my blood pressure does. And the heart test requires fasting and the potential use of drying agents in the mouth, where the tilt table test scheduled for later that day they want you to stay hydrated for 48 hours prior.

So the first thing I did was get cancel the lumbar puncture with the neuro's permission. He said I could have it done back at Sioux Falls when I don't have any other tests to do afterward. Then I went and did my pulmonary function test, which I think I might have done ok on.

I tried to get the autonomic test changed to today so there won't be any conflict with the heart test. I was on standby for two and a half hours, and they got me scheduled for 2pm today. If I get done early enough, I'm going to see if I can squeeze in the pulmonary consult.

That leaves the heart test for tomorrow morning, and I'm going to try to get the re-check with the neuro moved up if I can so I get my final visit with the rheumatologist maybe before close of business Friday so we can get back to Sioux Falls on the weekend. My husband is only authorized to be off work this week, and if I have to stay longer, he'll have to drive back and get me later, which seems a waste if all I have left is an ENT consult and the final wrap up with the rheumy.

My fatigue has been absolutely horrible. I have dozed off in the wheelchair every single day pretty much any time I have to sit still for more than 30 minutes, during just about any test that requires me to lie flat, and back at the hotel room while watching tv or a DVD. Had a mini-meltdown yesterday where I was so exhausted I wanted to call off all the tests and just go home.

But I might as well get it all done while I am here, even if I am discouraged because all my tests so far are indicating that I am just fine. That would be awesome if I felt as fine as the tests said. We'll see how the rest of the week goes.

My husband and I did go to dinner yesterday, at 4pm since I need plenty of time to digest restaurant food before retiring at night. We'd gotten four more inches of snow, but it was nice to go somewhere besides the hospital. We're supposed to get more snow tonight, and then more snow on Saturday, so that may also dictate when we head home.

Time to head back to the neuro department to see how early they can get me in to the tilt table test. I prefer to think of this one as my amusement park ride. :D

Will pop in if there's time tomorrow.

fanfaire
:cool:

I know your wore out,and I fell alsleep, just knock out sleep anywhere
and most of it was someone waking me up. Both at Mayo and
Barnes. I know how tired you are but please finish if you can,you
know how lucky you were to get in there. I didn't like the cam. down
the throat,but it really saved Bob's life..They found 2 very large holes..
They didn't know how he was walking around..You are a very strong
women so keep going. I'm so pround of you and hubby,and I'm glad
you had your dinner..Thanks for posting it means so much to all of us.
Many Blessings and ton's of hugs.. Sue

C will pm you,and Glen and Mrs. D thanks for would be good information..Mrs
think very carefully about the job,but I know you will. Bob is 79
i'm 61 we both burn in the sun, how much Vit. d would we need,we eat
alot of greens..Any ideas would be welcome. Thanks

Fanfaire,
 

When do you get the last consult with the neuro? Will you have a "diagnosis" before you leave Mayo? Have they firmed up the sero-negative Sjoren's diagnosis?

I know you are bone weary. It was such a struggle when I was there. I cried some of the nights because I was in such pain and so tired. But you worked so hard to get this appt., did so much preparation for the trip, spent so much money, etc. etc. Stay until it's finished. It's important. If you have need of it, the Mayo optometric (think that's the word) I'm brain dead. anyway, they make a wonderful moisture chamber eyeglass. I wish I'd stayed to get one.

Good luck, grit your teeth and finish this. :hug:
Billye