Saw the Neurologist yesterday

[briarrose]

I saw the neurologist yesterday for muscle spasms, muscle burning, shooting pain and burning in my spine, herniated disc questions, numbness in my feet and a few other symptoms he asked about; like slurred speech, forgefulness, etc.

He said other than sending me back for another MRI of the brain to look for MS that there was nothing he could do for me.

I asked about Lyme disease and he never answered me and I forgot to ask again

He told me to do some exercises at night to stretch out my cramped muscles and take calcium. He cut me off and showed me to his door like I was wasting his time being there.

He doesn't get it, how much pain and suffering I'm doing these past several weeks. I'm so upset & frustrated that I don't ever want to complain to a doctor again, it just makes me look bad by being a whiner.

You guys don't need to reply to this I just needed to say it to people that understand; preaching to the choir I guess!

thx

steph

[Ernie]

Hi Briarose,

I hear you!

[morgan617]

I had a rheumy treat me that way, literally showed me to the door and gave me a back hand wave. I gave him a wave right back, but my sent a bigger message! Sorry you had to go through this...fingerwavinmorgan

[melly4]

First of all, he works for you; you don't work for him!! He gets paid for seeing, listening, diagnosing, and treating you. Obviously, he is doing none of these things for you. Time to find someone who will. And I know it's easier said than done, but there are caring docs out there. You have to go find them sometimes.

Secondly, you are not a whiner if you are in pain and your medical "professional" won't help you.

I don't know what the hospitals are like where you are, but here, every person, young or old, is entitled to proper pain management. If your doctor does not address your pain management issues, this could be construed as medical malpractice.

I'm sorry you went through this, and I hope that you will consider finding another doctor who will help you with your suffering. Don't let one bad apple make you feel like you are a whiner. You don't deserve to hurt.

Melly

[taylortotmom]

I think one problem in our medical community is we are overspecialized! Neurologists treat migraines, look for MS and Stroke and that's about it. Cardiologist look for coronary artery disease and major heart structural problems. Urologist look for kidney stones and cancer. Our doctors get so focused on their one area that they don't step back and look at the whole picture. So, if you don't have MS a neurologist may dismiss you despite the fact you've haved transient parylisis for the past month! He'll say your fine and send you on your way!! I'm not trying to start a doctor bash but my expereience has been many specialist look for specific diagnoses and if you don'e have it you are "fine" despite extreme symptoms and disability. It is so frustrating. So, I'm sorry about your experience. But... there are some awesome specialists who do infact look at the whole system instead of just "their area" to try to determine if someone else might can help you better. I'm sorry, I've been in both situations. It is so frustrating to take the time to get in with a specialist only to be disregarded. Hang in there and if your symptoms don't abate find someone new!

Carmen

[briarrose]

Thx guys

I'm not ever going back to that neurologist again but I'm worried about what kind of note he's going to send my primary doctor.

I agree with you about our medical professionals being to over specialized. What happened to good ole medicine? You know where you could go to one doctor and expect to be treated properly or am I dreaming about something that never existed?

BTW don't think I mentioned this but the neurologist gave me this little speech about herniated discs (I was in the hospital a month ago with several herniated disc from S1 - L5.) He said, "If you take 100 people off the street and scanned them at least 1/3 of them would have herniation and not even know it." Well that's all well and fine but it was the inability to lay down on my back and the numbness in my feet that took me to the emergency room and the ongoing pain, backache, intense pain in my hips and sometimes shooting pain down my legs since then. If I had this herniated back before why wasn't I experiencing even one of these symptoms before the ER visit?? errrrrr just makes me peeved to talk about it. Idiots!

I was going to say something else but I forgot, tired, mad and heading to bed.

thx for listening!

steph

[briarrose]

OH and my physical therapist told me on one of my visits that my back mucle had been in spasm for so long that she could visably see the swelling in my back, she told me to go home and ice it every couple of hours.

[corina]

hey steph,

i'm sorry about this doctor. melly is right: they are paid to help you. i've started to explain my case when i see a new doctor and ask him if he's willing to help me. if not i'm gone (actually my husband will ride my wheelchair out of the office ). i had some very bad experiences (as everybody else here) and i don't want to be treated that way (anymore). so i stay polite but firm. and tell my PCP so that he knows and finds me another doctor. i told him what happened and he felt sorry for me (i didn't want him to feel sorry for me, i just wanted him to know what happened). mayby you can tell your primary, it's just an idea!

best wishes,

corina

[Poohbear]

I'm really brain gogged today so I hope i can remember all that just went through my head..... first off, is there a clinic in your area that specializes in MS? If so, you might want to consider going there. I mention this because even though you don't have MS I've found these Dr's to be much more supportive, understanding of strange symptoms and they tend to take pain more seriously. I'm wondering if you could maybe get some better help by a Dr who treats MS.

Second, I too have trouble with severe, chronic muscle spasms in my shoulder, back and neck; just like you mention, to the point where others can see the swelling. For me, I get worse when my thyroid has "goofed" again. If you have thyroid problems you may want to double check your levels and make sure they are okay.

Third, on pooey...what was it???? Oh, the Dr is right about the taking 100 people off the street thing. There have been some interesting studies about that so that is a good reason to Avoid surgery as long as possible but he's missing the boat about how it's still his responsibility to try to manage the pain and do other things that may help.

Hope you get some help soon!!

[Guest Julia59]

I want to reply anyway-------- What in the world it us with these neurologists?

They are really getting on my nerves. They don't have a clue do they.

Steph----I know how you feel----these Docs continue to stun me all the time. Sometimes i'm ready for it, and sometimes i'm not. And you all know I showed one neurologist a thing or two when he told me everything was manifested in my mind.

I have never seen so many idiots walking around with medical degrees and people's lives in thier hands. Scary thing isn't it-----------------

Don't let that Doc make you feel like your back issues aren't valid-----a herniated disk is a big deal--and should be taken very seriously---especially if your having numbness.

I hope you can get relief of your symptoms, ---and I hope you can find a neurologist who isn't such a stick in the mud......................

Take care of yourself.

Julie :0)

[sally]

Hi Briarrose,

I'm not sure where you are located but have you ever seen a DO rather than a MD? My experience has been a good one with a DO. They learn the whole body system and how it impacts on one another including diet, how you live etc... where normally if I'm not mistaken, MDs studying on a more specialized body part. DOs specialize as well into different areas of the medical profession such as cardiologist etc. Just a thought. Good luck

[SunsetParadise49]

I would talk to your family doctor about refering you to another neurologist. My neurologist was weird too and would keep asking me the same exact question that I just had answered. Luckily, I had an MRI just of the brain, and went back for the second appointment and was discharged because nothing was wrong. My cardiologist wasn't surprised at how he acted, he said neurologists are smart but they are weird lol. I hope that you can find one though that understands what you're going through. It's not very helpful when they don't really even help you!!!

[morgan617]

I told my doc that pain and what they find are relative things. Since we are so much more sensitive to stimulus and stuff, it would stand to reason that our pain would be more significant. I have a herniated disc too, and it doesn't tickle. I told him they should take mild, moderate and severe off the reports. You've either got it or you don't, period. He agreed. And as a nurse I used to tell every patient they wouldn't let their hair dresser treat them badly, so what gives with docs. They are not God , they are humans doing a job like we do. We pay them for a service, period. They are not doing us favors. We have paid 4000 out of pocket this year alone, just in co pays, so I know what I speak of. There are plenty of great doctors out there, but it's like everything else, sometimes you just have to keep looking to find one. Even my doctor can't get his peers to deal with me. He is as frustrated as me. Go figure...morgan

[Guest Finrussak]

just a thought on experiencing the sinking feeling that "something" may be added to your medical file. Its a real pain but I try to ask for copies of my medical records after such a visit and at least once per year otherwise( including ER and hospital stays...if lengthy they may charge .50-1.00 per page). I specifically request "office notes" as well as test results and interpretations and consult letters on file. Not only is it your RIGHT but this way I have found human error that could have caused me serious HARM!!! and then Ive asked for corrections to the file...you can tell a LOT about the Dr and his office staff that way...most are thankful to be able to correct it...the arrogant ones who act like who the heck am I to even suggest theyre mistaken, well, to those I never go back!

Also IF there is anything that might shall we say "color" another docs opinion ,I know which ones to remove from my personal file that I always keep on hand and copy when seeking a new Dr. This way I have complete control over what the new doc sees. Usually I send it all but I have in the past 15 yrs had to remove 3 reports...especially the one saying that after several months of abx I couldnt possibly have Lyme anymore so this MUST be a psychogenic illness, the one saying that one of my TTT were completely NORMAL ( yeah like dropping to 60 over palp, HR up to 168 is normal) ( for this case I simply added the results without the interpretation...this is the one btw that helped Dr Grubb get me in for an appt!!!)and another claiming I was diabetic ( normal blood sugar-he was senile endocrine guy who saw me at 84 lbs and bedridden, looked PAST me to my mother and announced that I should be able to WORK in one week!!! I was simply MALINGERING )

The new HEPA laws insure a patient's being able to access and get copies...NOT just send them to another Dr. Its always politically touchy so I simply say it is for my personal file to make it easier to send to my other specialists!!! which is almost always the case anyway. IF anyone tells you that you cant have them tell them youll report them to your state board!!!

Right before the laws changed and/or IF the office staff is very belligerent, Id ask for copies to go to one of my more cooperative docs and he'd simply hand it to me!!!!

with complicated medical conditions its always better for each of us to maintain our own files...even if just backup...Ive taken to throwing the file ( at over 8" thick now, it takes up a medium tote bag!!!) into the car if Im heading to the ER...so often theres something in there they find helpful...

and another suggestion: call the office when searching for a new Dr...ask to speak with a nurse or PA; frankly explain as briefly as possible the current problem you have with another DR; dismissive attitudes, lack of knowledge about your condition, etc and ask point blank if they think they can help you...Id say this has saved me many a wasted appt!!!

Finally, Altho its no excuse, its sometime helpful to realize that many Drs are very INSECURE when faced with someone they cant help!!! and rather than say "sorry I dont know but lets try to find you someone who can" they get alll huffy and seeya.

I have told my students in pre-med that the best class they can take is "interpersonal relationships" and one that unfortunately doesnt yet exist called " I am NOT God ( so I do NOT know everything); I cannot be expected to fix everything, but its NOT the patient's fault"!!!

[briarrose]

Corina

It's great that your husband could go with you. I might do a little better at times if I had someone backing me up. I got a chuckle about your hubby riding your wheel chair out

Poohbear

Wow, never thought about seeing an MS specialist, wonder if they would take me. I do have thyroid problems but I get labs every six months to check level as they keep my thyroid suppressed. About the 100 people off the street thing, I don't think any of them are symptomatic so I really think he's missing the boat.

Julia

thx I agree with everything you said.

Sally

My last primary was a DO and his answer to everything was see a shrink to help me manage my illness. I might have been more apt to listen if I wasn't having new acute symptoms. But 1 bad apple doesn't make the barrel.

SunsetParadise 49

thx I might do that.

Morgan

Funny I was saying the same thing yesterday about us being more sensitive and not textbook.

Finrussak

I always get my MR from the hospital but have never tried to get them from a private doc. And because I'm in a specific medical system they have access to everything I have done regardless. But you are 100 percent correct about getting records.

Your right about med students too. Furthermore I've had the opportunity to ask several doctors if they know about these illnesses and they all say it's not really covered in med school.

[corina]

hi steph, my PCP told me (when I asked him) that a shrink could help managing chronical illness and being disabled, but a shrink doesn't cure my POTS. I love him for that, because I felt understood. Hope you can find a doctor who understands!

Corina

[DancingLight]

Steph,

Like you, I'm WAAAAAAAAAAAAAAAAAAAY behind on posts...

I've really missed having you around on the board (sung my praises to you in my rebuilding the community post!).

I'm sorry you are having such a miserable time of it...

Just wanted to remind you (as I am sure you already know b/c you are sooo informed about things) that if you want to pursue Lyme you will probably really have to pursue it with a Lyme Literate MD...won't get much help from other docs. (I'm just learning this...from Jenn and others...)

I don't have answers just support that I am sending your way...

Emily

[faithinspires]

sorry to hear about your doctor ordeal and understanding the frustration of it!

[Sunfish]

steph -

sorry i'm so late in chiming in, but just wanted to add my ggggggggggggggrrrrrrrrrrrrrrrrr and some (((HUGS))) to send your way. sounds like this doc had the "if it's not on the list of things i specifically understand &/or deal with then it doesn't exist &/or matter" mindset which unforunately is out there. i encountered it with neuros at an alleged top hospital in the country. some others have given you some good ideas but just wanted to let you know that i'm rootin for you; i really admire all you're handling in terms of family, health, etc.

hugs & smiles,

melissa

[briarrose]

Sorry I'm so late posting a response here but I've been thinking a lot

Melissa you're right and I've always said that if they don't know what their dealing with than it either doesn't exist or you need a head shrink.

Let me tell you why I'm the most upset and frustrated here; for over 10 years I had been going to several doctor's about severe joint pain that I kept having. Now you can probably only imagine some of the responses that I got from my 3 different primaries and 3 rheumatologists. My first rheumatologist told me that he didn't know what it was but to go home and search the internet and maybe I could find my own answer My second rheumatologist how not a clue but said he believed something was going on. My third rheumatologist didn't even call me back with the results of my lab work. It was 5 minutes with Dr. Grubb listening to what I was describing and he started me on Neurontin for over active

neuro-transmistters. Now here I am having all of these muscle spasms and of course I'm going to be some what frustrated thinking that I don't want to go through 10 more years of **** before someone realizes that there is a simple answer. Now maybe there isn't any simple answer but it would be nice if someone was trying to figure out why I'm having such severe muscle spams.

I'm sorry for getting off on a tangent.

Emily it's nice to be somewhat back but not the best circumstances. I've missed my Dysautonomia family here. OH and Lyme disease thanks for the suggestion! I switched primaries last week and he did a lyme titer on me but I have no idea if this is a good test or not. I've been told to seek out a Western Blot or Elisa. I'm going to have to do some research this week I guess

Take care and thank you guys for your support!

[Poohbear]

Wish I could snap my fingers and make all of this better for you (and all of us here actually!)

About the MS clinic. I don't know how it is around you. I don't have to have referrals so I didn't have that issue. I simply called and listed some of my symptoms and told them I wasn't getting any help and they said they would see me. You just want to get in the door initially. Then, when I went in I told them I had been diagnosed with NCS but I had symptoms that didn't clearly fit just NCS. So, they did some testing to try to rule out MS (which aren't all pleasant but at the same time it's good to try to rule it out) and then I talked with the Dr. about the lack of understanding of multiple symptoms, few Doc understanding the disorder etc and they are used to seeing that with their MS patients. So, this particular Dr was willing to read and research and try to help me. I think there is many things we can relate to with MS patients so because of that I found the entire staff much more understanding and compassionate.

I hope you get some answers soon. It's miserable not knowing what's wrong and feeling so yucky all the time.