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Dr drama...don't know what to do now. (piog)

Posted by on Jul. 24, 2013 at 4:55 AM
  • 20 Replies

My wonderful dr closed her practice in May. She is 42 and said she just needed a break from the day to day stress. Getting a dr in my area is almost impossible and when you are on Medicare, it is just impossible. I called over 100 drs and finally was told that an approved practice had a dr joining them in July. I was told to get my dr to write prescriptions for my meds through July and the new dr did not prescribe anti depressants or anti psychotics. OK....the only anti depressant I take is for fibromyalgia and I can get my rheumatologist to do that.

I have lupus, rheumatoid arthritis, osteo arthritis, fibromyalgia, severe osteoporosis, 2 herniated discs, degenerative disc disease, cervical radiculapathy, spinal stenosis, and several other medical problems. I am on a lot of meds including 2 pain meds. 

I met the dr today. Well, he does prescribe anti depressants, but will not touch pain meds. Now, I am screwed. He said I would have to see a pain specialist. I have driven 100 miles to Dallas, seen one who approved the plan, but will not see me as a regular patient due to the distance. There is not ONE pain management specialist approved on my insurance plan in the Waco area. 

I am obese and the dr is SUPER OBESE. He asked if I had considered lap band surgery. I responded no and lupus patients CANNOT have lap band....if he just researched it, he would know that. Also, I have had 7 abdominal surgeries and have horrible, horrible problems with wound healing including incisions that have split open and others that had to be opened due to massive infections....all of which make me a poor candidate for any bariatric surgery. Also, I have SEVERE osteoporosis and am on daily injections for it which cost the insurance company $1400 a month. My t score is incredibly out of range for any bariatric surgery since vitamin malabsorption and osteoporosis are known side effects for bariatric surgery. I am on forteo which is a hard drug to have insurance approval. Although I brought my medical records, he honestly asked if I had a dexi scan. Um, yes, they would not know my t score without one. He commented on the amount of thyroid meds I am on. Yes, I have been hypothyroid for almost 40 years, have a goiter, and have had multiple thyroid nodules. I get the level checked every 3-6 months.....is it any wonder I am over weight?

I have lost 104 lbs on my own....I need to lose another 80-100 lbs., but bariatric surgery is not in my future. It took all of my restraint to not ask if he, whose stomach was dragging below the chair, had considered surgery. He wanted to see my surgery scars....His response was that I clearly had healing issues after seeing the massive scars. What, did I make up having massive surgeries?

I have fought tears all day and the appointment was at 9 am. I just don't know what to do. I called the insurance. They gave me the name of a pain dr...turns out, there is no dr by that name here and the phone number is to another practice. Turns out, the dr is a neurosurgeon in McKinney almost 130 miles from here. 

I miss my wonderful dr and just don't know what to do. 

by on Jul. 24, 2013 at 4:55 AM
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Replies (1-10):
Nonobeth
by Bronze Member on Jul. 24, 2013 at 5:08 AM
That's how it was with my mother when her Dr retired.

she had to find a new primary care Dr and a pain clinic.

between the two they have pretty much overhauled her meds, switching a few and cutting out a few.

it has not been easy for her.
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tossed
by Platinum Member on Jul. 24, 2013 at 5:16 AM


It sucks. Most of my meds are considered the "drug of choice" for the condition. It amazes me when they look at the list and make a snide comment about how many meds you are on and want to then add more.

He asked why I had not had back surgery. Well, surgery has been recommended for my herniated discs in my neck, but my neurosurgeon retired (also in his 40s) and I don't have a new dr, but osteoporosis now complicates any bone surgery. It won't solve the osteoporosis problem and I don't handle surgery well. 

There is no pain dr here on my insurance plan...none. He, new to my area, tried to argue with me because he just met a new dr. Well, that dr works for another group and is not approved on my plan. He said, "Well, you have a nationally recognized group, he should be covered." No, in this area, my insurance contracts with one of the major program providers and the dr he met is not approved. 

I guess I have some heavy withdrawl ahead of me and I am already in daily pain, so this should be a real joy. 

Quoting Nonobeth:

That's how it was with my mother when her Dr retired.

she had to find a new primary care Dr and a pain clinic.

between the two they have pretty much overhauled her meds, switching a few and cutting out a few.

it has not been easy for her.



justpeachy71904
by peachy on Jul. 24, 2013 at 5:20 AM
Ok try and calm down. What ends do you need. What meds so you take. I too have lupus and fibro and have quit my cymbalta and never took pain meds but the pain is manageable.

Docs say to increase st johns watt and vitamin b. Have you done that?

tossed
by Platinum Member on Jul. 24, 2013 at 5:42 AM

St john's wort did nothing for me and neither has any of the vitamin regimens.

There is not one source of pain...some days, it is the bursitis in the hip that is excruciating; the osteoporosis due to the spinal fractures is very, very painful (I have lost 2 inches in height). When the neurosurgeon saw my MRI films, his first comments after introducing himself was, "Never let anyone tell you that you are not in significant pain. My God, just look at these films." There is pressure on the spinal cord and bone spurs between several vertebrae that are not herniated.

I am on the fentanyl patch for chronic control and have vicodin for break through pain. I have been to a pain clinic before and they did not have any other things that helped....not biofeedback, pt or ot. The conclusion was that dut to the multiple issues I face, narcotics were the best option. We tried various anti inflammatories, but with the digestive issues I have, most are not an option and I had a massive reaction to the best of the drugs. 

I have meds for hyppothyroidism, GERD, IBS, flexeril for the muscle spasms, forteo for the osteoporosis, blood pressure meds, lasix due to edema, and a few other drugs.

Cymbalta and plaquenil really don't help with the pain, but the Cymbalta does seem to help with the depression. It has been the most effective of the anti depressants. I loved Prozac, but it exacerbated the lupus. We tried methotrexate, but it caused MASSIVE ulcers in the mouth due to the existing lupus activity. 

EVERY condition I have has been thoroughly evaluated and it has taken a long time to get to a fairly steady treatment plan. It does require monitoring and tweaking. 

I had to wait for 2 months for this appointment. Specialty appointments, if there is an approved provider, can take 3-6 months. Well, I don't have a 3-6 month supply of medication. I did as instructed and had my prior dr do a supply through July. I had to go through a 4-6 weeks period of time years ago between the end of my private insurance and the start of the Medicare prescription drug program because I could not afford the medication. Since then, I have broken 4 more bones, so more arthritis, have bursitis and osteoporosis that I did not have at that time...the pain is more intense now. 

Calming down is not really a reality since I know what I am facing. I have been told by more than one specialist that I will never be pain free, but that the goal is to take enough of the edge off to allow me to just function....which is on a very modified level. I am glad your pain is manageable. We had adjusted my meds to a point where I was at least not suicidal....now that management plan has been ripped away.


Quoting justpeachy71904:

Ok try and calm down. What ends do you need. What meds so you take. I too have lupus and fibro and have quit my cymbalta and never took pain meds but the pain is manageable.

Docs say to increase st johns watt and vitamin b. Have you done that?



xtina8817
by on Jul. 24, 2013 at 5:47 AM
I know the city blows but have you looked in/around killeen? That's like a 45-60 min drive correct? I feel like there was a huge super nice hospital complex near Harker Heights. Its been 3 years since I lived there though. I'm so sorry :-(
tossed
by Platinum Member on Jul. 24, 2013 at 5:51 AM


The major complex there is Scott and White and my insurance will not cover any Scott and White dr. Scott and White bought out the Hillcrest system, so I can't see any of their doctors either.  The insurance company did not have any drs within 50 miles who actually exist. They had a couple of names to give me, but when I tried, the drs were not there. The insurance company apologized and said they would up date their system. 

Quoting xtina8817:

I know the city blows but have you looked in/around killeen? That's like a 45-60 min drive correct? I feel like there was a huge super nice hospital complex near Harker Heights. Its been 3 years since I lived there though. I'm so sorry :-(



xtina8817
by on Jul. 24, 2013 at 8:43 AM
Quoting tossed:


uuuhg that's so bad :-(
Michelebelle82
by on Jul. 27, 2013 at 11:33 AM

Hi there....I'm so sorry you are struggling like this! I too have lupus and am on Narcotics for pain. I just moved back to CO from FL and had to find new Drs, so I completely understand. However, what is throwing me, is you said you're on Medicare right? So am I for disability, and I've never been restricted to who I see. Medicare will pay for any dr that accepts Medicare, and most do since anyone over 65 is on it. This being the case you should be able to use your Medicare to get into the pain clinic you want to get into, and waiting 3-6 mon is bull hockey. Tell them what's  going on, and that you have enough meds to get to the end of July. Worse case scenario, if by 7/31 you still don't have an appointment, you take your bottles of meds and your med records to your local ER and explain the situation, and ask for a 2-4 week supply to get you through. Not all ER docs will do it, but if they physically see your bottles and your history, you might have better luck. Let us know how it goes!

tossed
by Platinum Member on Jul. 27, 2013 at 9:19 PM



Quoting Michelebelle82:

Hi there....I'm so sorry you are struggling like this! I too have lupus and am on Narcotics for pain. I just moved back to CO from FL and had to find new Drs, so I completely understand. However, what is throwing me, is you said you're on Medicare right? So am I for disability, and I've never been restricted to who I see. Medicare will pay for any dr that accepts Medicare, and most do since anyone over 65 is on it. This being the case you should be able to use your Medicare to get into the pain clinic you want to get into, and waiting 3-6 mon is bull hockey. Tell them what's  going on, and that you have enough meds to get to the end of July. Worse case scenario, if by 7/31 you still don't have an appointment, you take your bottles of meds and your med records to your local ER and explain the situation, and ask for a 2-4 week supply to get you through. Not all ER docs will do it, but if they physically see your bottles and your history, you might have better luck. Let us know how it goes!


Thanks for the response. In my area, we have a choice to join a medicare advantage plan and I did because I knew I had to have surgery and have another I need to have. As a result, I do not have a deductible and always know my copay. The total cost for my last surgery was $115. The downside is that as a result, I am limited as to the drs on the plan. There are doctors who will take the advantage plan, but not traditional medicare. The overwhelming number of doctors in my area will not take medicare patients of any kind right now. I have gotten answers ranging from "we have a 6 month wait" to "send us a copy of all of your medical records for the last 5 years and we will determine if we are willing to accept you as a patient." Those with the 6th month wait will not make appointments at this point and if you call back in 6 months, you get the same answers. It makes it sound like they will take patients, but they don't. I have also been told that they don't want to take new patients because they want to see how Obamacare will impact their practices. 

There are 3 pain drs in my area (2 are anestheologists) the other is about to retire. I saw him several years ago and he said he would not treat me unless I lost 150 lbs. He spent the rest of the appointment telling me about his struggle with prostate cancer. Since going off of prednisone, I have lost 100 lbs, but will not see this ass again even if he was on my plan. The other 2 are in the same large group not covered by my plan. One of the two is new to the area. I looked into his patient reviews and he has the lowest I have ever seen...I suspect that is why he is here. 

I spent about 2 hours on phone with the insurance. At first, they told me the primary care dr had to request an exception to the plan so that I would have in network benefits for the one possible out of network dr. I called the primary care dr's office and they called the insurance. They called me at 4:30 on Friday (having had 4 days to take care of this) and said that I have to call the insurance back and get the exception myself. I called and was told that the primary has to call back and get the exception. I told the insurance rep that I am in a vortex and cannot get out. I was transferred and basically told that I could pay out of network benefits. No, that would mean a $500 copay plus 40% of charges and that is not why I joined an advantage plan and cannot afford that out of pocket expense. I was told that "It isn't like you would have to pay all of that for your first visit." That response infuriated me. I am on disability and cannot afford the out of pocket expenses.

I found a low income program that the hospital system that covers the pain drs has. I am going to call them Monday and see if their program covers doctor visits. I also found a nurse practitioner who is willing to take new patients. I made an appointment with her on August 6th. I pray that she is more willing to honor the treatment plan I have had for years. She has worked in an osteoporosis and arthritis clinic before, so I think she will be more aware of the pain that fibro, lupus, osteoporosis, arthritis, and spinal stenosis cause.

Would you pm me and tell me what narcotics you take and how it impacts you? I am always open to new treatment options.  

Thanks for your help. I contacted the pharmacy and there is one refill on my breakthrough meds. I also found my "emergency stash" of my long acting pain med that I keep for emergencies. This will give me a little more time, but not much. 

ConcernedCousin
by Silver Member on Jul. 27, 2013 at 9:33 PM

i have an awesome doc in san angelo(texas) who prescribes anti depressants and pain meds. he's internal medicine/oncologist so he deals with patients who have chronic pain and major illnesses. I have fibromyalgia and DDD and arthritis and bone spurs, etc etc and he does everything he can to help me! Not sure where waco is to me but you should google him and see if he could help? dr. john hunt san angelo tx

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