This road is too long and bumpy-alternate route?

Always_Believe · 03-27-2015, 09:45 AM

Quote:

Originally Posted by Littlepaw

From Always Believe "I've been without MD's/PT's/pain medication since September. I'm grumpy. I'm irritable. I'm depressed. I can't sleep well. I can't perform normal daily functions. I can't do anything physical to lose this damn 35 pounds I've gained. I can't focus. I'm in pain. And I feel like I can't ask any of my current doctors to do anything about it because the one I did (my PCP) informed me she doesn't prescribe narcotics - ok, great, no problem, how about some lidoderm patches? How about a PM referral? Her response is to try to keep increasing the gaba. Slowly. And maybe, someday, when the wind is blowing the right way she will refer me to PM. Until then, I'm in pain."

Reading this now I am sorry I skimmed past this post and responded to an earlier one. Aaack! I would've said something. My only is excuse is that yesterday I was focused on prep to go to Houston and getting my son squared away beforehand. Today was hopefully my last injection set to hydrodissect scar tissue in my ankle. So not fun....

It is no wonder you are grumpy, irritable, depressed. I am irritable for you and the delay in referral. Would your PCP maybe be more amenable to a referral for Physical Medicine and Rehabilitation? These guys are used to debilitation and pain. Some of them do a fair amount of pain management. I'm thinking maybe with the functional limitations and PT the PCP might go this route and it would at least be something.

I think more and more the pool would be so good for you. It might be worth a call to the Y to see if anyone in your area goes in on a regular basis. Also some of the churches have volunteers who drive people for appointments and such. There may be some kind soul willing to help out. I know an avid swimmer who lives 45 minutes from a community center with a pool who makes the drive routinely. She is a retired cop and wouldn't hesitate to give someone a ride when she goes.

Lastly, I know I said it before but I'm gonna say it again. Think about Mayo. It's in striking distance, they love changing people's lives and they do 100% write off depending on income level. They have pain, ortho, PM&R, the whole shebang. You could get that whole multidisciplinary thing going. I am sure they have a place people can stay that is underwritten by their foundation. Stanford does, Seton in Austin does, regardless of what hospital you go to in Austin. What have you got to lose? Call and talk to someone at their concierge office or bug a social worker. A hospital social worker will know how to get you set up. If they don't know they will find out. It's what we live for.

I am sending Healing Love and prayers for rest and restoration.
Littlepaw

I have a feeling my PCP is on her own personal mission at my expense. That, or she is taking it too slow for my advancement. I think she is forgetting how long ago this started and my physical need for pain relief/rehabilitation is growing and the door is closing. After more phone calls and emails, I have gotten my PCP to discuss my case with a neuro who is close enough but takes my insurance on a 'case by case' basis. I am keeping my appointment with my ortho for Monday in hopes to get some additional MD on board. My hope is that he will see beyond the bones. If he doesn't, perhaps he will see how the osteoporosis affects the arthritis pain and the correlation of that pain in my rehab.

As for Mayo...I have looked into a few things there. They do not take IL medicaid. Perhaps there is some study I can be a guinea pig for. I will keep looking.

Thank you again for your love, hugs, prayers and support.

Enna70 · 03-27-2015, 09:55 AM

It's a good idea to still go through with the ortho...if you feel he is focused too much on the bone issue, have him write a script, if he's willing, to see if you have RSD/CRPS, nerve entrapment or some other nerve issue....this might help a little for that neuro doc to take you one....key...might...

Always_Believe · 03-27-2015, 10:09 AM

Quote:

Originally Posted by Enna70

It's a good idea to still go through with the ortho...if you feel he is focused too much on the bone issue, have him write a script, if he's willing, to see if you have RSD/CRPS, nerve entrapment or some other nerve issue....this might help a little for that neuro doc to take you one....key...might...

I had an EMG/NCS in late March 2014. Confirmed peroneal nerve palsy. My ortho at the time said while it was "close" to requiring surgical intervention, he wanted to take a "wait & see" approach. My current ortho has zero clue what RSD/CRPS is and doesn't really care as far as I can tell. My PCP diagnosed it as RSD/CRPS my first visit with her. I am, after almost 2 months, on LESS gaba than I was when my last ortho took me off of it(in June 2014) because there wasn't enough improvement. My insurance requires my PCP to write referrals to all specialties. She has so far written for ortho, endocrinology and neuro. Ortho wrote for PT but the eval alone left me unable to bear weight for the remainder of that day and I have had a variety of issues since. I can't move forward but I can't stay here either.

Littlepaw · 03-27-2015, 10:11 AM

As for Mayo...I have looked into a few things there. They do not take IL medicaid. Perhaps there is some study I can be a guinea pig for. I will keep looking.

I don't know if their not taking Medicaid is an issue. It might be. They make a point to tout the 100% write-off though, so the question is does that mean total coverage of costs or only of the portion not covered by insurances. I think they have a pretty good charity program. If a care coordinator can't tell your then ask to talk to a financial counselor, they typically know how to get things written off.

Good luck!
Littlepaw

Enna70 · 03-27-2015, 11:15 AM

Yeah, the medical profession can make us jump through hoops! I recently found out that some places have a financial aid department or the likes....and I think you have to have a bill first...but you apply to them. Of course this is another anxiety of paperwork to do....

I couldn't get in to see a Neuro so I had an Ortho write a script, it didn't help me get in, but it helped with tests and having a stronger case of proof CRPS....but that wont help if your doc doesn't get or understand RSD/CRPS. I thought it would be nice if one doc wrote a script about CRPS the other would be interested in, hey what's this....but then again more work for him and staff.

Sighs...keep up the fight, this too shall be but a memory.....a rough road to travel though.....

Always_Believe · 03-27-2015, 11:51 PM

Quote:

Originally Posted by Enna70

Yeah, the medical profession can make us jump through hoops! I recently found out that some places have a financial aid department or the likes....and I think you have to have a bill first...but you apply to them. Of course this is another anxiety of paperwork to do....

I couldn't get in to see a Neuro so I had an Ortho write a script, it didn't help me get in, but it helped with tests and having a stronger case of proof CRPS....but that wont help if your doc doesn't get or understand RSD/CRPS. I thought it would be nice if one doc wrote a script about CRPS the other would be interested in, hey what's this....but then again more work for him and staff.

Sighs...keep up the fight, this too shall be but a memory.....a rough road to travel though.....

Thank you. I am staying in this fight until my knuckles bleed.
I got a call from ortho today, they have my PT eval all ready. Appointment on Monday (bright & early) and hopefully I can get some relief for the bone pain/muscle spasms.

Enna70 · 03-28-2015, 09:47 AM

Hey, keep us posted...and I hope you do get some relief....I am interested too in what they will say about your bone pain....keep up the fight

Always_Believe · 03-28-2015, 10:26 AM

Quote:

Originally Posted by Enna70

I am interested too in what they will say about your bone pain....

I assume you mean what my ortho is going to do about it...???

Enna70 · 03-29-2015, 03:54 PM

Quote:

Originally Posted by Always_Believe

I assume you mean what my ortho is going to do about it...???

Yes, you mentioned that you are going to PT and I thought they might say something about your condition....

Always_Believe · 03-29-2015, 04:27 PM

Quote:

Originally Posted by Enna70

Yes, you mentioned that you are going to PT and I thought they might say something about your condition....

Bone pain is common with osteoporosis. I call the knee pain I have 'bone pain' as well because I have almost no cartilage on my inner knee, so the bones rub causing pain.
I have only had the eval for PT & she sent me out the door with a loaner walker, telling me I am a high fall risk & should be using a walker at all times.

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