Someone Please Point Me To The Right Doctor!!!!
 

:( i AM SO FED UP i COULD SCREAM. I just got off the phone with my neuro who gave me no advice and had to "run" cause a call was coming in , I guess from someone much more important than me. I knew I shouldn't have called. I burst into tears. I just need someone to tell me what kind of doctor to go to for help here! I was asking his opionion!

Long story short: I have dx of fibro and cfs, and POTS, and also being tested for adrenal stuff...and I have some bad disks causing leg pain. Last fall I noticed my arms becoming more fatigued doing "over the head" activities. Then one day in December I had a sudden first time bad flare of pain in left arm, shoulder neck area. My neuro did an mri of c spine which showed sligt herniation and mri of thoracic area to rule out TOS. Then the pain kind of diminished....but has to this day flared up a bit and sometimes worse on left side,,,,especially if I sleep on it. My neck pain has gotten worse and tingles/vibrates sometimes. Also had a real vertigo dizzy feeling when severe pain attack happened. So now my arms are getting more and more fatigued (both) I cannot do repetative things at all, I can barely whisk an egg. or brush teeth, etc, . My neuro did do emg and ncs studies on my arms which were normal. He doesn't think my neck disks are causing this. Something weird is going on. He said something about getting punch biopsy from the neruo i saw at JOhns Hopkins re: my shakes (another problem) and I said would that affect my whole body? I have some kind of foot neuropathy. He said MAYBE> So I said should I see anyone else about this like an ortho doctor or neuro surgeon and he did say maybe we should consult about this again....but acted like he had done all he could. He did manage to mutter out ortho doc as he was Hanging up on me!!! I felt very belittled. I was asking him for his opionion, I even said I know no one else to ask about this. and he acted like I was just taking up his darn precious time. This was a 3 to 4 min talk. I don't like going to him but the 4 other neuros were even worse. I just want someone to figure this out@!!!!!!!!!!!!!!!!!!!!!!!!!!PLEASE HELP

just a thought........I dont know if you want to try a different approach, but maybe a D.O. or and Integrative Doc can help beyond what the neuro can

so sorry you are going through all this frustration with getting the help you need. It really is so sad that so many docs seem to take this *shrug* cant help you anymore attitude:(

I do hope you find someone competent to help you

Thoracic outlet syndrome????

The TOS Forum is down a bit. Sorry I thought you were looking more for a doc to look at the composite spectrum off autoimmune and other issues you mentioned as well as the TOS and I have always found the ones I referred to have an "out of the box" way of thinking that sometimes helps diagnosis and most effective treatment

Here is the link to our TOS forum
http://neurotalk.psychcentral.com/forumdisplay.php?f=24

Thank you
 

for the kind responses. I have always thought of TOS, but apparently they (2 neuros) don't think that is it from my mri. I have researched it. Heard it was a difficult dx. I was so angry mostly because he just didn't seem to care or comprehend how awful this is for me. and to just rush me off the phone...maybe he couldve said, if you want me to help you please make an appt,.....or put the other call on hold rather than dismiss me like a nothing, nobody.....So do I go find a Tos Dr? I am having an epidural injection Friday for the first time for my leg pain, I will ask them too. And as I was leaving my last appt, the nerve conduction study one, I asked about my arms.....he just sort of ignored me....said to come back in 3 months....why I have no idea...he does treat my migraines but they are well under control with topomax. Very arrogant type. I guess I could make another appt. with him and bring hubby along...

Most average drs aren't really "up" on TOS, or they have a bias against it from minimal knowledge on the subject.

The MRI pretty much will only show if the c spine is or isn't the cause of the arm pain or if there is a extra cervical rib or large bony structure causing the compressions. It doesn't show TOS itself as it can be a soft tissue problem.

You might look thru our stickys on the TOS forum- the second to last post has a "our symptoms " thread link that might help you see what many of us actually have symptom wise - the websites about TOS don't list nearly all of them.
But what you wrote about your arm/ neck pain sounded very familiar.

we have a TOS drs list sticky too.

I had the best help from an advanced PT guy and the very good chiro that I was lucky to find.

B12 malabsorption can be that global & often autoimmune
 

Thanks goodness this is one thing you can cover without risk. And while taking sufficient B12 (at least 1000 mcg --- not timed release) you can continue to look for other possibilities.

As one researcher observed, there are few things that can cause as many seemingly unrelated problems as advanced B12 deficiency.

Please read my website (not commercial, and not very long).

rose

Lailavia
 

When you ask a Question and they ignore SPEACK LOUDER,if they
igrore SHOUT and you may work your way To HOLLER. I'm not making
fun,i have been through so much,6 Drs. in 2 weeks. I have PN in feet
up to calves,hands to elbows across the back to left shoulder. Make it
clear you know where your pain is,and you want tests in the place it hurts.
After being a nurse for 25 yrs. i don't have to be so polite anymore.
But i always smile sweetly when i get to HOLLER.. Much luck Sue
Sjogren's Syndrome as well,but my finger is to sore to go on today.

Lailivia - Sometimes it helps to bring...
 

another pair of 'ears' along to hear all the subtle things YOU aren't hearing because of well...the screaming in your brain that says "WHAT IS GOING ON? WHY CAN'T YOU FIX ME?????" Am I on target here? Not to mention that you feel like you've been in the bottom of what feels like a compost pile for a bit. Between the pain, deterioration of your ability to move, and think [part illlnesses, part meds..I blame the meds-it's easier] and the whole 'wondering' part about where this all will end up? Sometimes it works, sometimes not. IF your DH [darling husband- in 'puter speak, so I am told] is the ONE the doc starts to address all your 'issues' to. GO GET ANOTHER DOC. Or simply beforehand tell DH to be quiet and let YOU do the questions. IF your guy is really Dear...he will also be assertive and make the doc address YOU as you ARE the patient.
Shiney Sue and jo55 are correct that YOU DO have to assert yourself..Ask the questions about 'test's for this and that...Diagnosing anything neuro is a long and exhausting process of elimination!
This site is about what all a neuro SHOULD look for and why...since there are a zillion neuro conditions...they start broad and then narrow it down. Rose is also on target about Vitamin B-12 - it can do wonders for lots of problems...LOTS!
http://www.neuroexam.com/content.php?p=2
BE sure to get and KEEP copies of any and all doc records you can! It is your right to have them, and also your right to get copies [tho sometimes you may have to pay].
As for tests you feel you should have...don't Tell a doc 'I have to be tested for X', rather make it his/her idea....'What about these X & Y tests?' that way it's their bright idea and you win with more testing...Worth a shot?
Hang in there..you just have to be persistent and 'gently assertive' thruout the pain. :hug: - j

Oh thank you all
 

for the support, it really means a lot...that someone has the time to talk to a total stranger and its not even their paid profession! It does bring hope back.. and I saw a nice doctor today! Thank you for the HOLLERING idea...you can see I tried it here on the net! I actually saw a real nice doctor who seemed human today! what a difference.

I went to get my first epidural injection into my back to hopefully relieve some of my thigh/leg pain. It wasn't too bad....this is a nice brand new place real close to my home....like my dh says " I could crawl there" lol .Anyway it is a spine/pain management center, I am new there, and I told him about my experience..he was between back to back procedures, yet took the time to listen to me for a few minutes..he said since the emg and ncs were ok it wasn
t nerve related, and since i had the carotoid and subcranial dopplers, it wasn
t arterial, so it may be muscle....and said that a rhematologist would be the one to do/or decide about a muscle biopsy. I thought a neuro would do that. Maybe both do. He did not seem to think it was any kind of peripheral nerve problem making my arms feel weak and fatigued , cause of no tinglies....So anyway I have made an appt with Dr. Wicked (as I now call him)(sorry that
is not nice), and with my rhemy. Bye Bye money.....
I have had so many blood tests...for all the rheumy type diseases....but this guy seemed to think that was the way to go. So I am still clueless as usual but I will keep dishing out money....and do some more surfing maybe cancel Dr. W and find a new neuro....I have copies of almost all my blood work and mris for the past 5 years except the emg and ncs and dopplers. I am in the middle of a ssdi disability case and only hesitate to change now, though does it really matter? This problem popped up at the last minute anyway.....It really wasnt' the cause of my initial app.

anyway thanks for getting me thru the day and night and life! You are all angels. I did just have a bunch of tests at new endo doctor. Does anyone know if Peripheral neuropathey can spread to the rest of body causing fatigue in arms and legs? I better go to the right site. But thanks again.

Hi there:

Sorry to hear about all of this. The doc fiasco is NOT fun... I have found, as Sue mentioned, that another set of ears at my appointments seems to make a big difference. My husband tries to go with me, if I have to see one of the Dr. Wicked's... It shouldn't be this way in this day and time, but it is amazing what the presence of a man will do in an office visit.

I wish Glenn could go with you to the doctor. In fact, I wish he could go to the doctor with me. I think he could hire out as an escort and make a killing. He is very knowledgeable, and I get the distinct impression that doctors think twice before treating him like a second class citizen. Not that my husband can't speak up, It is just different and he tends to be more softspoken... Still, it helps for him to be there, because usually most doctors will think twice before acting like arrogant a**es in front of someone's spouse, mother, brother or even a friend...

Once I had a surgeon act this way to me. My friend was there with me. He said there was nothing he could do for me and neuro tests were very expensive. My friend, a very tiny loudmouthed nurse, jumped up and told him I could afford $10.00 for tests, did he think that would be enough... He was so embarrassed, he didn't know what to say. I never think of things like that quickly enough... :) Yea nurses!!!

Try taking someone with you and see if you notice any difference. If not, time to doctor shop...

We are here for you if we can help... :)

Cathie :) :) :)

Why shucks
 

thanks Cathie,blush blush!! Yes PN can hurt in all those places,why not
post in both,wouldn't hurt (sorry about that} could only help.:hug: Sue

Better yet, maybe you could take both Glenn and Shiney Sue... I bet that would get some results... :)

Cathie

I'm brand new to the site so this may have been mentioned before-- you mentioned POTS and some other symptoms that aren't pots related, but close enough to some of the things I'm experiencing. Dr. Blair Grubb is the kindest and most brilliant doctor you will ever meet. He is the authority on dysautonomia and he's also very familiar with the link between Ehlers Danlos and dysautonomia (POTS, PAF, MSA, ect.). He's in Toledo, OH if anyone wants to see him. But be prepared for a wait--his waiting list is between 6mos to a year. I assure you that he's worth the wait.

I hope this helps,
Renee

ReneeP welcome, and you will find us all over on
 

other boards here as we usually have mulitple issues. I suggest you read past posts here, those under chronic pain and those under peripheral neuropathy to find out who we are and what all we have [Please read the 'stickies'/sites that should stick around at each forum and some recent posts to get a feel for who posts what - You might find some questions you have are already answered...so then you can go to the next 'level'. The whole 'thing' about dealing with neuro issues is the 'neuro language'. The technical and medical and laboratory terms tossed around take a long time to get a handle on, let alone explain to a mere moral HUMAN 'IN' this stuff for the first time! Thing about it all is, YOU WANT TO KNOW NOW! Well, a whole lot of what you may want to know is here on these boards, but you mite not be able to asorb it all in a way that's all usable right away. Always remember tho, we are people who HAVE these conditions/diseases...we aren't docs. At times tho, I think we are ahead of our docs in keeping up with what is going on about us for treatments and medications because WE, WE have a very selfish interest in keeping up. We help each other as best we can, how we can, when we can.

I know one really hates to give out info on the internet, but if you find a poster here or elsewhere on the boards who you feel safe asking some things of, go ahead. I have found that no one here is nasty nor has any ulterior motives other than to try and help. I encourage you to read more of Lailavia's posts under the peripheral neuropathy site at:
http://neurotalk.psychcentral.com/forumdisplay.php?f=20
Just click on the 'blue' and you will find others in or near your situation ...or places here or elsewhere to get the BEST info for your needs - j

Has any of your Dr.s mentioned Fibromyagia? With it you have pain all over your body and extreme fatigue. Also, you mentioned dizziness. Do you by chance have a low blood pressure or abnormal heart rate. If so I would recommend an electrophysiologist. Could be an autonomic nervous system disfunction.