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Dr. Mark
Dr. Mark, Neurologist (MD)
Category: Neurology
Satisfied Customers: 1985
Experience:  Neurosurgeon - Brain, spine, and peripheral nerve surgery
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I have had RSD/CRPS about 13 yr.. It began after injury to

Customer Question

I have had RSD/CRPS about 13 yr.. It began after injury to my right shoulder and neck.. 2010 nerve pain and problems with right leg began. In 2014 specialist confirmed the disease was "active and spreading", he said it was in right leg (painful, mottled, sensory changes, mobility problems etc) 2 respected Specialists in NY tell me there is no cure for CRPS and I've been told mine is spreading, could go to other extremities or even my internal organs - but for sure it cannot be cured or controlled. Doctors offer medicine and internal spinal stimulation for symptoms. I was on lot of meds many years and now weaned off due to side effects, permanent damage from Neurontin. Word finding etc. I do not want to take meds (or have their side effects). The spinal cord stimulator horrible & makes pain worse. I live either in bed or recliner to keep right foot from swelling. I have at least 2-4 symptoms from each stage of CRPS, end stage ones began past few years.. Now I have a live-in helper who does almost everything due to my worsening mobility. Sometimes i need help swinging legs off bed & help walking esp upon awakening. Some days all day problems, some days gets bit better in afternoon/evening. Some days my hands/fingers don't bend right or my feet are numb like wooden sticks for an hour or more.Often wake feeling I'm on fire or freezing, yet skin doesn't feel that way. I fall often, right leg just collapses or I feel off-balance for no reason. My right leg/arm feels like fire to me most of time (cold to others, used to be flushed sometimes) or numb like wood (pale). Muscle spasms. Approx past 2 yrs I have "crumbly teeth" and feel occ beginnings in other side similar to way right leg felt when disease spread here. I use - Heat,/cold, meditation, music, prayer, mental techniques and they seem to work as good better than od than many medical attempts. I've lately been working on desensitization of my surgical and hypersensitive areas with mild success. It feels like I'm just waiting to die, as I lose more and more ability to use my body. The pain horrible with/without meds, Sleep irregular and less than required. Appetite varies from poor to none, nauseated. Becoming homebound and unable to walk, or even do anything like just sitting more than short time (only refuge Sleep, music & meditation - which doesn't allow Doing Anything in Material World) WHAT ELSE can I try naturally to deal symptoms of this chronic progressive, tormenting, disabilitating disease? ANY suggestions for symptom management (other than medicine or SCS's)? I have no quality of life, this is just existing... Thank you for any help.
JA: What medications do you take daily? Are you allergic to any medications?
Customer: Baby aspirin every day and often. It hurts my GERD less than coated aspirin for some reason. Allergies: Imitrex and Sulfa Drugs
JA: Anything else in your medical history you think the doctor should know?
Customer: History of migraines, Panic attacks, Anxiety, Insomnia, Depression Had surgery on shoulder and removed crumbled carticlage/part of right clavicle after my injury. Developed "frozen" shoulder and thoracic outliet symdrome right shoulder, I was told by specialist all my major musicle groups had shut down and small supportive muscle doing all work (causing the knotted muscle spasms)
Submitted: 1 month ago.
Category: Neurology
Expert:  Dr. David replied 1 month ago.

Hello, this is Dr. David. I am reviewing your question now and will be with you momentarily.

Expert:  Dr. David replied 1 month ago.

have you tried medical marijuana?

this can help decrease pain, help with sleep, improve appetite, decrease anxiety symptoms.

Customer: replied 1 month ago.
To be honest, a friend who lives in a state where it's medically legal did provide me with some hard candy from the dispensary he uses; he has doctor who prescribes for him... and it helped me in many ways. Improved Sleep, appetite, less migraines, less stress, relaxed muscles. less anxiety and seemed to distract me from the pain for periods of time. Also, I did not have any negative side effects from it. Sadly, I live in a state where it is not legal, even medically.
Expert:  Dr. David replied 1 month ago.

then you have to use it either illegally or move to a state where you can use it legally.