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Old 03-27-2011, 11:14 PM   #1
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How to find a doctor willing to address my pain?

It would appear that introductions are in order. I'm 21 years old, and I have a (undiagnosed) chronic illness. All that doctors have really been able to establish at this point is that it's real, and progressive.

In the past 3 years, I've pingponged from diagnoses as diverse as MS, schizophrenia, myesthenia gravis, mitochondrial disease, and lupus. While my doctors have been good at addressing most of my concerns, one has been pushed to the side. Pain.

I have multiple systems in pain, some with confirmable cause (back pain:neuromuscular scoliosis. Stomach pain: 2 ulcers found with endoscope, and etc) In the past I've tried:

Cymbalta (couldn't stop vomiting)
Amitriptyline (aggravated sleep problems)
Gabapentin (currently taking, might be helping a little)
Carbmazepine (didn't really take long enough, but the doctor at the health center wouldn't share what she saw on follow up that indicated discontinuation)
Benzodiazepines (used as muscle relaxant, made my back much worse.)
Physical therapy (6 week course, muscle weakness was worse at the end than at the beginning.)
Aspirin/Advil (little help, was told to stop when the ulcers were found)
Tylenol (still take, don't really feel like it helps)
Various SSRIs
and procaine patches.

The pain has steadily gotten worse, and at this point I can probably expect there to be 2 days within a 3 week juncture that I am hurting so badly that I am unable to get out of bed. On more than one occasion, I've soiled myself and had to lie in it because I just couldn't get up to go to the bathroom.

The anaesthesiologist to whom I was referred is uncomfortable prescribing any opioid medication to someone as young as myself (21,) and has outright told me that I'm a kid, and don't know how bad opioid dependence will be at 35 if I start now.

What I'm really asking is, how can I find a doctor who is willing to treat me like the person that I am? I have a fantastic amount of supplemental information to provide that would demonstrate I'm not just a junkie off the street; abnormal MRI, abnormal EMG, abnormal biopsy, and so forth.

Also, if you have recommendation of a non opioid treatment, I would absolutely love to hear it. I don't feel like opioids are the only thing that I'd be willing to do, I just feel like I've really exhausted my other options.


Thank you so much for any help that you can offer. Also, apologies for the typing; I'm sure there are plenty of errors, as is the wonder of typing on a netbook keyboard.

 
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Old 03-27-2011, 11:29 PM   #2
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Re: How to find a doctor willing to address my pain?

A starting point would be ST Tramadol, plus Meloxicam (a long acting antiinflamatory/painkiller that doesnt cause ulcers)

Tramadol is a mild narcotic, but it has a very low potential for abuse and dependance.

From there, there are several steps that you could take, depending on your situation,.

Just because you're young doesnt mean you shouldnt have your pain addressed, that is absolutly disgraceful.
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Old 03-27-2011, 11:34 PM   #3
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Re: How to find a doctor willing to address my pain?

Quote:
Originally Posted by jonnstar View Post
A starting point would be ST Tramadol, plus Meloxicam (a long acting antiinflamatory/painkiller that doesnt cause ulcers)

Tramadol is a mild narcotic, but it has a very low potential for abuse and dependance.

From there, there are several steps that you could take, depending on your situation,.

Just because you're young doesnt mean you shouldnt have your pain addressed, that is absolutly disgraceful.
(Delving more into my personal situation)
I've actually suggested low dose tramadol to see how it goes, but the doctor is concerned about the seizure risks. Some of the diseases for which they are currently evaluating me (I believe Niemann Pick is the frontrunner) have episodic seizures, a pretty strong contraindication to tramadol. I'll look into meloxicam. My uncle has an intrathecal pump that has some non narcotic working fantastically, but it's only available in the pump unfortunately.

Also, I've never had a seizure, on a second readthrough it felt like that was the implication. It's just that if seizures mark the relapsive bursts of worsening, it would be best not to encourage them.

Last edited by submisfit; 03-27-2011 at 11:36 PM. Reason: addition

 
Old 03-28-2011, 08:28 AM   #4
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Re: How to find a doctor willing to address my pain?

really sorry for the situation you are being forced into. but i am just wondering exactly what came up 'abnormal' upon the MRI and also that EMG/NCV you had, and what WAS actually tested with those two tests(body areas)? and where exactly was the biopsy taken and what was the ultimate pathology of it, as in it too being 'abnormal'? the more specific info you can give the better advice WE can give you. specific "conditions" simply require more specific pain treatment. Marcia
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Old 03-28-2011, 09:32 AM   #5
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Re: How to find a doctor willing to address my pain?

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really sorry for the situation you are being forced into. but i am just wondering exactly what came up 'abnormal' upon the MRI and also that EMG/NCV you had, and what WAS actually tested with those two tests(body areas)? and where exactly was the biopsy taken and what was the ultimate pathology of it, as in it too being 'abnormal'? the more specific info you can give the better advice WE can give you. specific "conditions" simply require more specific pain treatment. Marcia
MRI was done at age 17, showed a few high intensity areas that were interpreted as white matter lesions. LP showed no oligoclonal bands (spelling?,) so the neurologist didn't think that it was MS. On the neurological exam following the MRI he noted some muscle weakness, particularly in the ocular muscles, and referred me to a neuromuscular specialist. Single fiber emg of the frontalis suggested a neuromuscular junction transmission problem, but I didn't really respond to myasthenia gravis medication. Muscle biopsy was taken from the bicep to look for signs of a mitochondrial disease. No ragged red, cox- fibers etc, but it did show type I/type II fiber grouping, and angular atrophic fibers, indicative of neurogenic atrophy.

I don't know how related any of those would really be to pain. I more meant to say that I have enough positive medical tests that I can demonstrate that a.) i'm not trying to scam for meds and b.) it's not a psychosomatic problem.

 
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Old 03-28-2011, 11:49 AM   #6
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Re: How to find a doctor willing to address my pain?

I can sympathize with the diagnosis of psychosomatic, I was diagnosised with this and hypochondria. It was not until I broke my ankle and leg, reset the breaks myself and tried to walk away that they started taking my neuropathy seriously. I still was not given pain medication until my GP stepped in several years ago.

The GP was able to piece everything together and I have been seeing him for eight years so he knows me well. If you have a GP you have been seeing maybe ask him for help.

 
Old 03-28-2011, 12:50 PM   #7
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Re: How to find a doctor willing to address my pain?

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Originally Posted by tingles View Post
I can sympathize with the diagnosis of psychosomatic, I was diagnosised with this and hypochondria. It was not until I broke my ankle and leg, reset the breaks myself and tried to walk away that they started taking my neuropathy seriously. I still was not given pain medication until my GP stepped in several years ago.

The GP was able to piece everything together and I have been seeing him for eight years so he knows me well. If you have a GP you have been seeing maybe ask him for help.
Thanks. The psychosomatic wasn't an official diagnosis, just a suggestion by my psychiatrist as being an aspect of my schizophrenia (which was later ruled out.) I was eventually diagnosed with clinical depression and insomnia, but at the time the psychiatrist was quick to suggest that I was delusional, and that the pain was all in my head. The psychological stuff might be related to physical health problems, but I can't really say until everything is diagnosed.

I'm not currently seeing a GP; I was a student at university and saw doctors at the student health center, but I had to withdraw at the end of last year because health problems were severely impacting my grades. After a spike in symptoms I dropped from a 3.83 to about a 2.7; not exactly a trend that I'd like to continue.

Last edited by submisfit; 03-28-2011 at 12:52 PM. Reason: Additional

 
Old 03-28-2011, 01:13 PM   #8
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Re: How to find a doctor willing to address my pain?

I'd forgotten, but I should also say that I've tried acupuncture. I didn't really think it would work, and stopped going after 3 sessions because the combustion therapy (or whatever the incense-on-the-nickel-sized-metal-on-your-leg is called) gave me a 2nd degree burn.

 
Old 03-30-2011, 10:02 AM   #9
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Re: How to find a doctor willing to address my pain?

hi sub. i spent yesterday actually trying to better understand what your main symptom really 'appear to be, or the more signficant thing that would more than likely generate for you, the most pain. and that was the very specifc 'type' of scoliosis you have been Dxed with. what THAT is created by esp compared to the more commonly seen 'scoliosis with the 's" curve or 'c" curve, just IS a very very much differnt thing. while the scoiosis that we all used to be checked for in school,which i soo remember completely, is somethat an "idiopathic(unknown casue0 type of scoliosis, what you actually have states the main reason/cause is from' the loss of control of the actual nerves and or also muslces that just totally support the spinal column. thats a BIG difference and created by something that simply NEEDS to be idtentified at ITS own base.

the most 'common causes' of this are cerebral palsy and the dystrophic(like muscular dystrophy) types of conditions. i need to ask you some questions here sub if you don't mind?

are you still on your parents medical ins? just how impacted is your back lower spinal from the NM scoliosis? when exactly was this seen(how old were you) in your spinal or noticed by someone? were you born with ANY actual curvatures to the spinal or did this have a rather progressive slower showing as time passed?

one really odd thing i kept on seeing like over and over agin while looking at MANY different areas on the net was mostly how this was found/treated in children and not so much in adults? everything kept mentioning 'children" having this and what treatments they did in trying to help change that curvature before they got to an age when that spinal is soo much harder to change? that one kind of had me a bit baffled.

BUT it even mentioned IN CHILDREN, when every other modality/med that went thru the ones you have alrerady tried simply were not working for even KIDS, it was time to try using the narcotic approach to help with the pain. so if a mere child could expect this level of care for 'their pain' why are they witholding from you what does indeed state would be more the 'expected next step" even 'just" with the NMS goin on? that IS simply soo very wrong in so many ways i cannot even begin to tell you how sick this is. there just IS that law that was passed that when any patient complains of very real pain and esp like i stated before, there IS actual evidence to back UP that this just can be a very painful condition too, it and you, 'deserve to have it 'appropriately treated' and appropriately IS the keyword here in this. right now it is NOT at all being appropriately treated and simply needs the 'right' meds/modalities used to help YOU be more mobile and active and just help to releive what comes along with ANYONE who suffers with chronic pain, depression. there just ARE so many positive reasons that this should be implimented for you than cons here at this point.

even using the newer form of oxycontin seriously would NOT even really be much of an overall addiction issue since you jusy do NOT feel in most cases, that actual release,since it is much more subltle compared to the shorter acting types like the percocets and hydrocodone(vicodin) based SA meds do? a longacting simply gives what IS needed for any CP patient to maintain the best overall pain relief, a good level of overall blood plasma level of narcotic always in your system.

if your current doc is not simply addressing what IS soo very impactful to and in your life, you need to find an actual pain doc/pain clinic who understands what chronic pain simply 'does' to the persons overall life and body whos suffering it. once a persons true quality of life is simply taken from them in any real way, a huge domino effect of crappy stuff simply follows. and even moreso when we are suffering with some pretty impactful pain as well.

knowing exactly how your overall condition, esp the neuromuscular scoliosis just is realistically impacting your body and in what specific areas would really help. i am trying to understand a more "mental picture' of how your back just 'is'? what possible types of curvatures are there would very MUCH impact certain areas with pain. i am running out of time here so ineed to stop. but if you could answer the questions i asked, it WOULD really help me alot to know where you are at and what any possible options may be for you esp if you ARE still well insured medically. and obtaining the real underlying dx of this whole bunch of symptoms and findings. marcia
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9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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