Saw Neuro/PM Specialist today...

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pixie6976
Regular Member


Date Joined Oct 2009
Total Posts : 52
   Posted 10/29/2009 11:45 AM (GMT -7)   
So, like I figured, I seem to be starting all over. They asked me what types of medications I was on before that had helped, and I told them a couple of them. They basically just gave me some mobic, which I told them I was on b4 and it did nothing. I also said that I wasnt sure, but I thought that might have been the one that made me throw up black looking stuff, and he said to eat food and drink lots of water. They ordered some blood work, to rule out RA, and I told them that I was diagnosed with psoriatic arthritis a few years ago. Im not sure what the other blood work is for, dont know their abbreviations. I gave them my MRIs from one year ago, I had them updated when I was on pregnancy medicaid after I had the baby (you keep preg medicaid for 2 months after giving birth.) They didnt look at them in front of me, but I assume they did behind the scenes. They also ordered new nerve damage testing (you know when they attach stuff to you then shock the crap out of you) even though I gave them the written results of the same tests from 1 year ago. When they asked about what I want out of treatment, I said to get my life back. To have less pain. To be able to pick up my son, and play with him. Ieven told them that I wanted to go back to school and contribute to my family, but as it is now I can only sit in my recliner. I told them about the muscle spasms I get everyday, and about the depression. I didnt even get to see the neuro Dr. Griffin... it was one of her lakkies. I'm sure they just want to get their own testing to cover their butts bc drs in FL are under alot of scrutiny bc of the huge opiate abuse in this state by drs and patients, but now its going to be another month before I can even tell if this doctor is going to help me at all. Of course this visit was devistating, but I guess that at least all angles will be covered. I dont know how Im going to make it another month, but thats my problem, not theirs. Apparently the fact that I have been able to get it somewhat manageable by sitting in my recliner and doing nothing means that what...I should be able to deal with the pain. It hasnt been easy, and I havent been perfect, but Ive done what I had to to get by. I guess Im just afraid that nothing is ever going to get better. And it really pisses me off that a friend of mine was just dismissed from one dr bc he found out she shared some of her neurontin with her mother, and she immediately went to another dr and got fentynal patches and pills galore. Im doing it the right way and getting squat.
 
Now Im too pissed off to keep typing, and cant see through the tears anyway, so I'll check in later.
Degenerative Disk Disease, 3 deteriorated and 2 of those are also herniated in lumbar spine, also 2 herniated in C-spine. Psoriatic Arthritis, with the sholders, hands, left hip, and knees affected the most. Major anxiety and depression issues. Wishing I could learn to live with this.
 
Currently on Elavil 25mg... what a joke!!!


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/29/2009 12:04 PM (GMT -7)   
    Pixie, I really feel for you! Im going throught the same thing here in KS. I have been left here in limbo for several weeks now. Want a Epidural?.....No Problem!......Dosn't help?....Too bad!.......Want Pain Meds?.....tuf! I have been getting the runaround....and I feel like crap. So I totally feel for your delima there. Its crazy I know, as I have friends that seem to get what they need.....it makes me go nuts trying to figure out how they did it. This is a real problem in this country and I don't know what the answer is and how to fix it either, but it needs some attention. It all started with the Drug Heads, and a Flake of a Doctor to screw everything up for us that need treatment. Anyway my heart feels for you and keep trying, as that is the only option left. Im just glad we have friends here that understand. It does help to come here and whine a little, so feel free to do so anytime you want. here is a great big HUGG out to you....now catch it! :)

pixie6976
Regular Member


Date Joined Oct 2009
Total Posts : 52
   Posted 10/29/2009 1:26 PM (GMT -7)   
Thank you so much, Screaming Eagle. I feel like a piece of crap bc im sitting here crying and feeling sorry for myself, while my son is alone in his walker. I guess hes ok, hes playing, but I feel like Im neglecting him, along with everything else. I found out you dont have to have a referral from PCP for a psychiatrist, so I called one and couldnt get thru. Im waiting for someone to call me back to see if I can get in. I am at the end of my rope, and I just cant seem to stop crying. Too much stress. My hands are shaking from the anxiety and Ive been getting heart palpitations. I just want to say that Im done and let it be at that, but theres my son in there being cute and I dont have that option. I dont know what I would do with out this support. My hubby only thinks along the lines of fixing things and this cant be fixed. He means well, though, and I am lucky to have him. Guess im rambeling now, but I just wanted to say thanks again.
Degenerative Disk Disease, 3 deteriorated and 2 of those are also herniated in lumbar spine, also 2 herniated in C-spine. Psoriatic Arthritis, with the sholders, hands, left hip, and knees affected the most. Major anxiety and depression issues. Wishing I could learn to live with this.
 
Currently on Elavil 25mg... what a joke!!!


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 10/29/2009 1:40 PM (GMT -7)   
Pixie I too am so sorry for what you are dealing with. Like you, the only comfortable spot I can find is my recliner and hubby jokes that I live there. LOL. Anyway I just wanted to voice my opinion here. I've been on the same pain meds for the past two years and I believe that I am becoming tolerant of them. I've asked for something new, in a way that doesn't raise any flags and gotten nothing. The last time I asked if there was something else they could try me on my doc informed me that I was on the strongest (even over kill) dose of Kadian and that she would not change me to anything else. The way she said it was really snotty and I it made me feel like a heal for even asking.

What point made these doctors so sterile? Why do they not listen to us? and futher more, I can't go to another doctor because first, work comp would deny it cause there is a doctor closer to me, and two I just am too far to drive clear to KC just to see some other doctor. I have never met my primary PCP doctor as apparently I just got handed off to the nearest PA. I guess he doesn't see many patient or whatever, but I think its crappy that he doesn't at least talk to me. I've asked about that too....don't go there I guess. They tell me to be more agressive when it comes to my health care....and when I do I get smacked with words.


Hugssss
Frustrated Scarred
What doesn't kill us only makes us fight back harder! :P


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/29/2009 2:21 PM (GMT -7)   
Pixie,
First...

((((((((Pixie))))))))))))

Big hugs. We unfortunatley understand what you're up against, and those feelings of desperation. I am so glad you were proactive and called a psychiatrist. Heck, get out the list your insurance covers and put calls into them all. Around here it take take a couple of months to go in to see one, but your PCP is usually willing to give you an anti-depressant, and it looks like you need something more than the elavil. So ask for something to help your depression. Usually that won't get you labeled as a drug seeker! At least you might elevate your mood a bit while you're going through all these tests. Even the new PM may be willing to prescribe that, and you could call and explain the crying, low mood, etc., and that the elavil isn't work. Could they at least help you with the depression right now.

As far as new testing, the EMG may be because nerve damage can accerate. This way they can compare findings from a year ago. Heck, the neurosurgeons around here would not even see me (this was for a surgical consult) unless the MRI was 6 months old or less. So the tests may be needed. What you can do is see what records they've received from your former doctors (these things often don't get where they should, or are left sitting by fax machines, etc.) and start calling until your new doctor has all your previous records. That will help shorten some of the time.

In the meantime, we're here. And you could also try calling a psychologist, or other therapist, preferably someone with experience with chronic pain. Your doctor may have some names, or you could ask your insurance company, or just look in the phone book and start calling. Call a bunch and leave messages. Don't call one and wait for a call back.

(((((((((Pixie)))))))))

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/29/2009 3:14 PM (GMT -7)   
AWE Pixie
soft hugz to ya and a shoulder to lean on, only the right though (left is always sore)...
wish I knew how to help ya or had some good advise...keep us posted talk anytime on here..
will be reading your posts...Lots of extra soft hugz for now....
(((((((((((((((((((((((((((((((((((((Pixie)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


pixie6976
Regular Member


Date Joined Oct 2009
Total Posts : 52
   Posted 10/29/2009 3:14 PM (GMT -7)   
Thanks PALady, the lady at the medicaid office gave me 3 psychs that take medicaid. 2 of them no longer take it when I called them. Hopefully the one I left a message with will call back tomorrow. My hubby just gave me a big lecture about how I should be happy that things got started, that our kid has food, that Im one step closer. Im supposed to feel better because of these things, and he is right. Im not the only one dealing with this, and I guess I should just get over it, but for some reason I cant. There was on emergency walk-in psych place, but I dont feel Im at that place yet. The one that Im waiting for a call back on says in the phone book that they take medicaid, I will try to call again tomorrow. If that doesnt work I will go down the line in the phone book. I dealt with all this emotional type problems when I was a kid, and I know the tools, they just dont seem to be working for me right now. It seems like a giant step back as far as my mental health goes, but I can admit when I am overwhelmed.

Everyones support is staggering in the face of what you are all going through.
Degenerative Disk Disease, 3 deteriorated and 2 of those are also herniated in lumbar spine, also 2 herniated in C-spine. Psoriatic Arthritis, with the sholders, hands, left hip, and knees affected the most. Major anxiety and depression issues. Wishing I could learn to live with this.
 
Currently on Elavil 25mg... what a joke!!!


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/29/2009 10:58 PM (GMT -7)   
 
   Dear Pixie,
 
     Good evening *warm huggs* How was your evening? Did any of the doctors you left messages with, call back? I hope someone can get back to you soon. But, I was thinking... Most doctors have a "list" of pain psychologists that they work well with. perhaps yours has a list too? Maybe that would be an option, if you arnt having luck on your own?
 
     As I was reading your first post I noticed you mentioned "mobic" and when I looked it up online it said it was in the NSAID family tree? Is that right? Do all NSAIDs make you sick or just that one kind/ formula? I am a little frustraited, becuase, I do not understand why they would want to try something that made you so sick? I cannot imagine the fear and worry you must going through. *huggs*
 
     As far as wanting a new MRI, etc. I think that might be normal, thou I am not positive. I get new pictures every 3 to 4 months of my spine. But, gosh, sure doesnt help to sit around in pain while they get all the new pictures and tests done. THAT has GOT to be frustraiting. Hopefully, the end result of their "testing" will be a treatment plan tailored to you needs. I remember when I first began seeing my doctors (will be 2yrs in FEB2010) I had to sit in limbo for a long time to begin treatment, then each stage in the plann took months!!! Of course my situation is different and I hope that isnt the case for you, as you have been in pain for far too long!
 
 
     Most all thou, you are NOT feeling sorry for yourself. You want some sort of function restored. That doesnt make you a bad person atall! Just because you are in sever pain 24/7 doesnt make you a bad mom either. What matters if you give all you can each day, and THAT is what makes you a wonderful mom. *warm huggs* Stay strong!!
 
*warm huggs*
    dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/29/2009 11:21 PM (GMT -7)   
Hey Pixie what happened to the enbrel? Is this no longer on offer?
I just thought with PsA you should have some sort of biological med thrown in there. It stops the inflammation and cuts out the joint damage or minimises it. Plus helps with pain.
I'm sure you are so frustrated with the need for more tests, sometimes I feel like I must be radiating magnetic energy all by myself. I sincerly hope they come up with something for you at the end of this long slow process.
I'm continually amazed at the medical profession, I've been left feeling so depressed by some of their wayward comments. Its like you're an inconvennience at times, especially if you don't respond like you're suppose to to a med. Mobic is one of the ones I'm on, its heavy on the digestion and they put me on nexium to help digest it!!! Endless cycle at times.
My heart is with you, golitho

pixie6976
Regular Member


Date Joined Oct 2009
Total Posts : 52
   Posted 10/30/2009 6:03 AM (GMT -7)   
I thank you for all of your responses, and you are right. I know that one of the tests they are doing is a rheum test with this blood work. The Embrel is on hold because my PCP only wants to give one refferral at a time, and my next appt. with her is 3 mnths away. Mayby with this RA test from the neuro, I can fast track to Embrel, and a Rheumy. This is all probably for the best, where as the last time I had drs they just threw drug after drug at it and It didnt seem to help. I am sure that at least some of this pain is RA related, and maybe this is a good thing. Just reallly hard to wait. Feeling a little better this morning, I guess... At least I can suppress the feelings better today. Will keep trying to contact the Psych that accepts medicaid today. Thank you all so much for being there.
Im going to be a little cheezy now:
(((((((((((((everyone)))))))))))))
Degenerative Disk Disease, 3 deteriorated and 2 of those are also herniated in lumbar spine, also 2 herniated in C-spine. Psoriatic Arthritis, with the sholders, hands, left hip, and knees affected the most. Major anxiety and depression issues. Wishing I could learn to live with this.
 
Currently on Elavil 25mg... what a joke!!!


pixie6976
Regular Member


Date Joined Oct 2009
Total Posts : 52
   Posted 10/30/2009 10:23 AM (GMT -7)   
I just talked to my mom (who was a nurse) about the blood tests abbreviations on the lab order, and she said that that they are a RA and immune system related. Maybe I am starting over, but this seems like more extensive testing is being done. I have suspected for a long time that RA was causing most of my pain, maybe, I cant be sort of fast tracked to a rheumy through this neurologist. It will be reeeaaally hard to wait, but this could be for the best.

Also the psych office called this morn and they can get my in for intake on tues at 1:15. Hopefully things are looking up... at least I feel like I'm doing something instead of sitting around. Thanks for being there.
Degenerative Disk Disease, 3 deteriorated and 2 of those are also herniated in lumbar spine, also 2 herniated in C-spine. Psoriatic Arthritis, with the sholders, hands, left hip, and knees affected the most. Major anxiety and depression issues. Wishing I could learn to live with this.
 
Currently on Elavil 25mg... what a joke!!!


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 10/30/2009 11:01 AM (GMT -7)   
 
 
Pixie,
Unfortunately that's the way it usually goes when you see a new PM Doc...they like to start out the way they think will work...like it's the beginning of your pain, instead of well into it.  They like to do things their way...so, no matter what other Dr.'s have said in the past(even the recent past) they don't really care.
 
I have never had Mobic, so I can't say anything...but I know I am so sorry that you are back to square one...or even -4!!!
 
It sucks.  just remember to call them if it's not working...they may do something.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/30/2009 11:41 AM (GMT -7)   
Pixie,
So glad you got an appointment with the psychiatrist. That was really proactive on your part! What you might do is write down all your symptoms, all your current medications & doses - that's important, what's worked/not worked in the past, and any other questions you have. That will save time and if you're at all like me I can never remember everything once I'm in the doc's offce so I always have my little list of questions on a notecard in my hand!

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/30/2009 8:47 PM (GMT -7)   
Pixie, I think the reason for not giving you meds , is that they might interfer with the blood work for the rheumy...
That would be my guess, so hang in there and once they get your results then they'll know better on how to treat you.
If it's not RA might be fibro, but either way I will wish you the best and keep you in my thoughts...
Lots of soft hugz for now...
(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((Pixie)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Keep us posted when you get the results, okay...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

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