PLEASE HELP ME WITH THE KIND OF DOC i NEED
 

Message from Lailavia.

This post originally appeared in Autoimmune disorders

http://neurotalk.psychcentral.com/sh...ad.php?t=22222

then in spinal disorders

http://neurotalk.psychcentral.com/sh...ad.php?t=22224

but lailavia asked that it also appear here, because the neurologist mentioned PN.

Advice happily accepted.

Hi Supernova:

You are going through hell with all your symptoms, pain, etc. I bet you are as confused as hell, and now you might even have PN. Oh brother.

I can only tell you what helped my husband Alan. Five years ago he was in so much pain due to his PN that they put him on the Fentanyl Pain Patch. He actually went up to 125 of the patch, and many cancer sufferers go to 100. Just imagine, He was on 125 of the fentanyl. My girlfriend Elaine, who has stage 3 lung cancer is on a 25 patch. Just goes to show you how horrible some PN pain can be, right?

Well, one day, a few years ago, I was looking at these forums and I happened upon a doctor called a chiropractic/neurologist. There are not that many world wide. It's a special field. It's chiropractic and the doctor take 3 years of neurology. So he knows all about nerves and things that a neuro would know, but he also knows THE WHOLE BODY. And how it should be funcitoning.

Well, you should see my husband today. He went in there weighing 275 lbs, all stiff like a board, (he never exercised), he couldn't bend in any direction, his PN was horrible. The first exam is over 3 hours. The guys runs every test in the book on you. Then Alan went (at first) 3 times a week. His doctor used a device known as a G5 machine. Alan says if he could buy one tomorrow and have it in the house, he would, that's how good it makes him feel.

Alan then went from 3 times a week, to once a week, and over the years, he goes maybe once every 2 months. He owes this particular doctor his life. That's how we look at it.

Oh, and soon after he went to the chiropractic/neurologist, he was able to wean himself off the fentanyl patch. You have to do it in stages BUT HE DID IT. Now I'm not sure where you live, but just google chiropractic/neurologist in your area and hopefully you can find one. I don't know if he/she will accept your insurance. But let me tell you one thing, this is the best thing that Alan could have ever done.

He is presently taking IVIG therapy. But he doesn't use any pain meds.

And the best thing is that after going to the chiropractic/neurologist, he lost 75 lbs, and joined a gym. Excercise really helps (that is if you are able to do this). But first you have to find the right doctor.

Now since everybody you have seen is not doing you any good whatsoever, you really have nothing to lose. Why not give it a try. If they can help you, isn't it worth looking into??

Let us know how you do, okay?

Melody

Hi Melody
 

Thanks for the reply, Supernova actually put that post there for me, Lailavia, after I had a big rant/vent in the autoimmune fourm. I am just tired of playing ring around the rosy with docs.

My big question now is , can PN (hich I have PN like sx in my feet, tinglies, cant stand shoes, feelings of warmth, pain, etc) spread up into your body to cause fatigue/weakness in arms, it could be in my legs...just harder to tell cause I always have had pain in legs from my fibro, and now have disc disease and thigh pain. My new spine/pain doc gave me the advice today ( I went for my first epidural shot) that it seems muscular and I should consult with my rheumy re: muscle biopsy. I am just jumping form one dx to the next. I recently had the emg,ncs on my arms which were fine, and doppler studies on main arteries,,,,he was sooooooooo nice to me! Some docs are real and nice. My hands are getting tired from this typing . Tested for Myasthenis gravis, just about tested for all of it...This neuro did test me. But isn't there still muscle biopsy and spinal tap> oh crap I feel like a medical freak/mystery.

Thanks for the helpful info Melody I need all the help I can get! Glad you can still dance!

The problem--
 

--with so many nerve symptoms is that they may have many different causes.

For instance, sensory and motor symptoms may stem from problems with the brain, the spinal cord, or the peripheral nerves, and the symptoms may be exactly the same. And--the number of conditions that cause nerve damage that feels similar are legion.

This is why the testing for such symptoms is often a long, expensive process of elimination.

This is part of the reason I highly recommend the spreadsheets at www.lizajane.org to list and track tests. The charts are about as comprehensive as is possible regarding tests for neural symptoms, and many of the tests can shed light on a large range of other possible conditions (hormonal disregulation, metabolic disorder, circulatory problem--in short, anything that might affect nerves) as well.

Hi Lailavia,
The best doc for the job is a neuro that specializes in Neuropathy, as previously explained there are many reasons why the nerves get damaged and having the best working for you will give you the best chance of finding the cause because they will do all the tests that are necessary to hopefully find a reason why this is happening to you.
Perhaps if you mention what area you live in, someone here might be able to recommend a neuropathy specialist close to your neck of the woods.
good luck
Brian :)

Very good comment Brian:

Lailavia: The only good doctor is a doctor who, besides listening to you and paying attention to your symptoms, works WITH you, respect you, and doesn't brush you off because he can no longer help you. And if a doctor can no longer help you, I think he should recommend someone who can help you.

There are plenty of good doctors out there. Plenty. The thing is to locate them, get an appointment, and do what he says to do. If he says to lose weight, then we lose weight, if he says to exercise, (that it will be beneficial), then we don't say, with a groan "oh, I'm too old to exercise". If Alan said that, believe me, he wouldnt' be where he is today, 75 lbs lighter and development some muscles. If Alan had not gotten that foot ulcer, he'd still be at the gym 3 times a week working out like Rocky Balboa. So he got sidetracked. Now that he has the shoe, once the ulcer heals, you'd better believe that he'll do all he can do to fight this neuropathy.

In his words "when I exercise, go to the gym 3 times a week, I have no pain".

I find that absolutely remarkable coming from a man who used to weight 275 lbs and wore a fentanyl patch. And of course I know that many people with various degrees and various kinds of neuropathies cannot go to the gym. Each person is different with their various diagnoses. Sometimes, the only thing a person can do is find the right med that works for them.

But Alan was a very lucky man. He found Dr. Theirl and he LISTENED. He listened to Dr. Theirl talk about the whole body, the way it works, the nerves, the muscles, how important exercise is. So when Alan used to have a bad day (with his ulcer), we would lie on the bed and just do simple stretching exercise. I mean, any form of movement is good for him.

He is (as a norm), a couch potato. He can't go for walks because he has to keep the pressure off of his foot. I wonder though, now that he has the oft loading shoe, can he go for simple walks, like 5 blocks or so??? He forgot to ask his podiatrist. It's much easier to sit in a chair and watch tv, then it is to get on a bike and pedal away. I understand this. It's all in the motivation.

As he puts it, "when you have a stress test, and you are told you have a blockage, and you have an angiogram, and then you have angioplasty, and you have to take plavix, aspirin and metoprolol for the rest of your life, and the doctor says "no salt, exercise", well that did it for Alan. He listened, he did what he was told was necessary, and guess what??? It actually helped his neuropathy!! I wouldn't have believed that this is the same man who laid on the bed 4 years ago screaming in such pain that I had to slap another fentanyl pain patch on him (he already was on a 50 and we had a box of 25's in the house). I didn't know what to do. I took another patch, (didn't give a second thought because he was screaming his head off, because I had inadvertently put capsaicin creme on his toes and he had a scratch and we didn't know it). Well, forget about it!!! He went nuts. It was 2 a.m. and he was screaming, and there I was with cold packs and cold towels, washing off the capsaicin and nothing worked. All I could think of was getting another patch. I did and in 2 seconds he just said 'Whoa". I will never forget that night. A stupid 25 patch, added to the 50, and his pain went from a 10 to a 0. I was never so frightened. Then we found out that if you have a scratch (and his feet are numb, so he didn't know he had a scratch), that the capsaicin is hot pepper stuff, and it burned him. It really really burned him. We never went near that stuff again. And from that night on, he wore socks to bed so his nails on one foot wouldn't scratch the other foot.

He then went to blue stuff and it worked for a while (funny though, I have a cousin with severe neuropathy from a spinal tumor, and she put blue stuff and it burned her like crazy. She won't go near it. How the hell can blue stuff burn you?? Never understood that. She also tried Bio-freeze and it burned her too. Wow, all the various ways neuropathy reacts to the cremes

Anyway, sorry for the long post

The best of luck in finding the right doctor!!!

Melody

Thanks again everyone
 

I guess I'm in such a fog, but my main question is...can neuropathy be felt as only pain and fatigue, weakness,, with out the tinglies, numbess, etc? I have the sort of numby tingly stuff in feet....but my arms just plain fatige and weakness.....wondering if I should try straight for a specialist or see Dr. W. my current neuro one more time...I don't like the hospitals he works at, I may switch to next county to go to the one I like. Same distance. I live in the Dc metro area near Annapolis.....if anyone knows anyone. I have to go look at my "referral" book anyway. I am just confused if I should see neuro or rheumy or both. To tell truth this rheumy has done all the basic rheumy type bloodwork so I think he will just say its fibro....but its way different and intense...he did refer me to a physiatrist for my leg, I chose the spine specialist cause seemed safer...getting a needle poked in there I wanted to be safe....this doc was an anesthesiologist. Yet the other one seemed good from his online description. OH I pray I get the SSDI so I can keep going to these docs. My grandpa did have ALS but non of my sx point that way thank God,. any way I am rambling I need to do some imp paperwork. Bye and thanks for now. That chart is a good idea. I have folders galore....I like to be organized...

Not every type of neuropathy causes pain.
 

There are neuorpathies primarily of the larger sensory nerves that handle vibration, mechanical touch, and body postion that cause lack of sensation and balance disturbances, in addition to sensory disruption that might be felt as tingles or erroenous sensations. And--there are neuropathies that are primarily motor in nature, with few or even no sensory symptoms, that may well be felt as movement disruptions or fatigue, as the body has to work much harder to move properly as muscle becomes de-enervated.

See:

http://www.neuro.wustl.edu/neuromusc...nimax.html#lmn

http://www.neuro.wustl.edu/neuromusc...imdem.html#mmn

http://www.neuro.wustl.edu/neuromusc...mdem.html#cidp

I will definately spend time looking at all of the links
 

I did make one more appt. with my current neuro, I will not flip out in his office I promise, but I will have some info and if he doesn't want to help its moving on time. Thank you very much.

Laila

Make sure you come back and let us know the outcome anyway, good luck and just think what that doc would do if the shoe was on the other foot :)

I have the tingling sometimes now but mostly mine is the severe pain.Before my pain issue I was complaing how I felt my legs couldn't walk. Its hard to explain but like they were fatigues or so weak at times. I went to a physiatrist who did not help me and ended up going to the neuros. The physiatrist did do my first nc though. I'm not sure what else they do but I think more with movement and nerves. So that may help with your issue and the fatigue. If you have the specialist your talking with you may want to schedule an apt. I have found wait lists can be long. You can always cancel. Have you had all the blood work? I understand feeling like the mystery as am in the same and also understand rushed doc feeling. Sorry I can't offer more as the true experts here no more. Good luck

Daniella do your legs feel as heavy as tree trunks when you run? That was one of my first symptoms besides numbness and it continues to this day.

The arms that are fatigued. I have that, especially if I do something repetitive with those muscles. It does not seem to be the arm itself, but seems to be coming from the area across the back, where nerves, tendons, muscles and ligaments attach (area around the scapula). Sometimes it bothers me to the point where I cannot carry my purse.

I know you need to see a neurologist, but I will tell you what helps with this for me. Trigger point injections in the areas I described above. A tiny bit of cortisol, used with lidocaine to numb the area, is injected in those areas. The cortisol helps with inflammation in the area.

In our area, pain management docs do a lot of these, but I know this can also be done by doctors in a number of other specialties.

By the way, regarding your comment on Fibromyalgia. My old Internist told me he felt that this diagnosis was what Rheumatologists come up with, when they cannot figure out what is really wrong... He also said he felt that this would eventually be proved to be a connective tissue disease... Boy, my old Rheumy got defensive when I repeated that to him... :)

Guess I wasn't very tactful, huh? :)


Cathie

whoa!
 

I sat there for several hours looking at all those nerve diseases, sheesh....Now I wonder if I should even bother forking out another 25 bucks for him to tell me to go somewhere else....but i will need a referral ..when I went to see another neuro re: severe am shakes....at johns hopkins I needed a letter from my doctor....they put me in with some one in movemet disorders and he said He couln't find anything wrong neurologically. Even my psch doc doesn't think its just anxiety. So I am also going to an endo new now. my plate is full of unexplained symptoms... sometimes I just feel like waiting till something really freaky happens............but if it is a muscle disease that can progress and affect my breathing I want to do something! I will keep in touch. If I can find someone in my specialist book I could call for a referral I really don't want to travel to hopkins again. I could not do the tandem walk at all and he blamed it on medication. Kinda scary....I was hopeful that I would finally get some real help there and NADA again...well sorry I am rambling and whining...have a good evening...

Good luck to you. I don't think this is in your mind and that ****** me off when docs make one feel like that or lessen the severity. I don't think you should wait because you don't want things to get worse. If you don't want to go back to the original can you call for a referal? Mine did it over the phone.
Heyjoe before my sever pain the year before I always had very sore calfs and like sometimes I could not walk through a store. I thought it was just from too much working out. Then now I have the severe ankle/foot pain where I can barly get out of bed. I don't know if that was the start and I let it go and then like this now. No one can tell me.

Of course it's not in your mind!!!

I once watched an episode of Strong Medicine on Lifetime. It's an ER kind of series. They brought a woman in screaming. One of the doctors who came to her asked her what was wrong. She replied "I've been diagnosed with Fibrmyalgia". I will never forget what happened next.

The doctor went over to another doctor and whispered "You know there's no such thing as fibromyalgia, it's all in her head", and the other doctor looked at her and said "does it really matter, the woman is in pain". And they prescribed morphine.

Well, by the end of the episode, the doctor (who didn't believe in the diagnosis of Fibro). well....she did such an about face on that subject.


I think it's horrible when a doctor says "it's all in your mind". Like when I went through all those tests to see why I was having bladder spasms that lasted for years. They didn't have to tell me they thought it was all in my mind. I could tell by their faces. If all the x-rays,sonograms and cystoscopes come up negative, and I still had those damm spasms and I always thought I had a bladder infection (I didn't) and I even asked the doctor, could I have interstitial cystitis and he actually laughed in my face....well, what on earth is a person to do? I mean, I went through hell.

It's not in our heads. Our bodies are reacting to something. They treat us like we are brainless idiots when we say "we are in pain" in a particular part of our body. We actually have to be our own advocates for pain treatments and our own advocates on B-12. I have had many conversations with physicians who tell me I'm crazy to think B-12 will help me.

They don't even want to learn.

Thankfully, our Dr. Fred is always receptive. Actually we don't have to tell him anything because he already is up to date on the latest ANYTHING that is going on in the medical world. But he's an internist. It's the neuro's who really have to do their homework (especially on B-12), don't you think??

We baby boomers (and all others with PN), well, we certainly have our work cut out for us.

Melody

wow
 

Well I went to see my neuro , not so wicked, maybe just uptight?, and asked about my arm weakness again. He ordered bloodwork for B-12, another ANA I had one in Jan from rheumy, another western Blot (he ordered several months ago) RA factor Ive had them before....and another Brain mri and c-spine mri! Had both within 6 months. I asked about further Periperal testing and he wants me to go back to Johns Hopkins as they do not do that in their practice.....so he did not blow me off...I can't believe he is redoing all that stuff. Maybe I was too hasty in calling him Dr. Wicked....he just doesnt' have a good personality. Does seem like hes trying.....so now I have to find a doc to do these other things......I feel much better at least its a start..I hope I can find a place closer to do nerve biopsy or whatever they want to do cause I cant' drive in Baltimore. and I cant have DH take off for every appt. I have. The doc in Baltimore who couldn't figure out my other weird "somatic" HA problem did say I could pursue my neuropathy questions there....maybe I should..I would not get him they have neuros for all the different sub specialties....I could have gone to Hawaii with all I have shelled out on these docs!!! Well glad to have a new beginning of sorts....I already did the bloodwork and got lucky they have opening for mris tomorrow. If only i could get my bathrooms cleaned!

Great Start!
 

Sounds like you have a great start with your neuro. Now stay on track and have it all done. And...I think Johns Hopkin is a good place to go. And..you've got multiple doctors trying to send you there.

Billye

Well, it's not I who goes to Hopkins--
 

--it's Bob who does, I believe--but that's OK--I do think highly of the Hopkins neurology department, as much of the inital research into skin biopsy as a diagnostic test for small-fiber neuropathy occurred there. (I also correspond with one of the researchers there.)

I go to Cornell Weill, which is also an excellent place that specializes in neuropathy. With many peripheral neurologic syndromes, it's vitally important to get care, if you can, from a center/practice that specilaizes in neuropathy, which is not the specialization, or even an area of great familiarlity, for most neurologists. (The Mayo Clinic, where Silverlady went, is also such a place.)

Whoops!
 

Sorry about that Glenn,
Blame it on the Sjogren's fog. :cool: I'll learn to let you post first, I think. I've corrected my post.
Thanks for correcting me.

Billye

Lailavila -Hopkins is probably one of the...
 

BEST places you could be to get diagnosed! I'm posting a list that comes out annually and Hopkins has been 'in the top 3' for the last five years!
http://health.usnews.com/usnews/heal...pecihqneur.htm
OK that said, IF you look at Liza Jane's worksheets...it maps out all the different routes of testings that neuros do [or SHOULD DO] to check out all other options and zero in on what the real problems [diseases/issues...whatevers are]
One thing Hopkins is very good at is LOOKING AT THE WHOLE PERSON. From all you have said that is important, and they've boodles of resources at their fingertips...Your insurance is covered thru them...go for IT!
Just understand a couple of things: One- neuros love to go slow with the testing and evaluations...they are very cautious people as a group [usually]. But they can move on testing and other evaluations soo quickly it can make your head spin if they think they are 'on to something'. If they move quickly, count your blessings and move heaven and earth to GET there and be tested! Two- you may not get 'along' comfortably with this particular neuro, but be HONEST above all! Telling little lies or omitting some things could be crucial to any diagnosis if at all. Also, keep in mind, that once you are in that 'system' you may find a doc you like or feel more comfy with during all the testing and such. Should that be the case, ask that doc to 'take you on' if they feel it's OK...worth a shot? Nothing ventured, nothing gained.

Relatively speaking...the 'what's wrong with me?' issue for me neuro-wise took just over a year. I was not internet-wise at the time, just running on gut-feelings! When I was diagnosed with cancer...it was 6 months from date lump found to final implant surgery...Talk about whirlwind? My mind was in a turn-around fog half the time! The only reason I know my decisions were right was that I ALWAYS followed that instinct. You have that going for you in you! You just have to learn to direct it in ways that will best benefit you.
I definitely do not want to denigrate any of the hospitals and neuro resources near me, but, honestly I am a bit jealous that you are in a HOPKINS neighborhood! These days, tho, I'm not sure I'd survive the trip!
SO...:hug: for now, go forth and fight the fight, do the tests, and be more confused than ever...comes with the territory! - j

Thanks yet again!
 

:) You are all so awesome. I was so despondent just a week ago, I'm so glad I picked up that phone and made that appt!...I even had an office credit so didn't have to pay. I am working on getting Liza Janes chart downloaded, my brother can help with that....and also I know there is a Marc train that runs from my town to Baltimore....with a shuttle I think to hospital. We didn't have too much trouble getting there at all....but getting out even dh got on wrong road...I know I couldn' t do it. I guess I will go for it ..it takes awhile to get started up anyhow...records have to be faxxed, last time I needed a letter....he acted like I would be going to the same doc, I tried to explain there was a coordinator who put you with someone....he said we send people all the time then stalked off. lol...I can figure the rest out...Yeah I am lucky, they are in my referral book....that place is soooooooooo big,,,,you get an ID its kinda crazy, lots of people with really bad problems its like a small city..I hope I can get some help....I noticed on the mri slip he had written "dymyelinating disease" so I guess checking for that with the mris....got those done today too. I love the support here. Thanks from the bottom of my heart and I will try to read some others now that I feel a bit better.....:p

I live
 

about 90 miles from Barnes,it's good,went to Mayo it's good use to
go to Cleveland it's good but it's all those dr 's here, med student read fast
4th year you present,the big shot you went to see you don't see or they
shake your hand,pat you on the back on the way out. But i know i still
want to get me a Dr. who went to one of those top 10. humm Sue

You are NOT in any
 

Shabby treatment situation...HOW you Present your issues/conditions, and where you go from there is well, gonna/GOT to be good?... We all have to think positive here! As good vibes are all we GOT!..

I see my neuro...he asks how are your doing? My response is always: as good as can be expected- not looking for miracles here, but would like one or two if available..Not that I'd like different mind you! As in worse...You get my drift.
Being cool, calm, articulate, have what brain you have left working and intact...hey. these are key features to keep the doc's working FOR YOU!. As for the Oh-my-goodness'es! Well, you ARE allowed those breakdowns AFTER the appointments...not during ever! Silly but true, they tend to respect US for the non-breakdown-ness... I do believe YOU are on the right road? One of those silly gut feelings... - You will get to where you need to be! I know it!

YOu have learned soo far...how to describe pain, the levels and how it disables you. You have learned how to do all that to DOCs who sometimes have no reference points as to your real discomfort... you are getting tested for all the zillions of issues that may or not be the the 'cause', but also tothe effects...which lead to proper treatments. TREATMENT of the pain and then all the other stuff is what all this is about! Keep strong and STUBBORN...you WILL Get there! Tho the next week won't be it, as there seems to be a holiday stuck in between...somehow.
You have made heaps of progress tho..just get those tests done! Not fun, not easy, but...you will achieve lots more doing it all!!!! Good thoughts and heart - plus a few hugs! - j

Hi dahlek
 

I just noticed you are in the DC metro area like me....I am near Crofton, which to me is real far from Baltimore.....I am wondering if Anne Arunderl medical Center has a good neuro dept. Ah well....this could be a bad thing so maybe I should make the effort. I have noticed just the past few days my right pointer finger "buzzing" slightly sometimes....:eek: again... thanks all for the great support :hug:

I'm back
 

Sorry no posting so long, docs on vacation, we went on a short trip....well I got another mri this one had some more lesions....signs of possible demyelinating disease and to consider vascular. and maybe ischemic vessel. So what type of Doc does treat Vascular diseases? Before I even saw this mri I had noticed a dark spot, dent like thing on my nose bridge,,,then my dh noticed it..so of course I start looking up vascular disease and the Wegener's Granulomatosis causes saddle nose deformatity! I am wondering if I should get this checked as sx match alot of other stuff going on....this is a nasty disease....I don't see an area for vascular disease here, is it rheumatology? Here we go again. I finally got referrals and records are being copied for my JH appt....which hasn't been made yet...I am slowing down a bit its too much work. The neruo was going to do a spinal tap but then backed off and decided to see what they have to say up at Hopkins! MS isnt a PN disease, I think he just wants to get rid of me! IF I go up there hopefully they will help me in some way this time....calling rheumy now....

confused
 

I called a vascular surgeon in my referral book and they said a vascular or thoracic surgeon should deal with it. She said my neuro should have advised me....well we know how that goes....anyway she said I would need a referral...from the research I have done it seems I may have some kind of hole or collapse of bridge of nose. Wow. Whats next.

I went to ENT doc
 

re my nose dent and he is ordering a ct scan to get started. I am learning the art of skipping my pcp doc for the referral and just calling and asking for it. they seem to be ok with it...Just got my records from neuro...what he writes and says are so different, meaning he says alot in the report, but not in person....I guess he saves his energy for the paper...well he has lead me in the right direction so I am just trying to sit back a bit and go with flow....thanks to all again...