Discussions By Condition: I cannot get a diagnosis.

Chronic leg pain, worsening HELP PLEASE

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: ensoul
  • June 14, 2007
  • 03:34 AM

first I have several sources of chronic pain; bilateral carpal tunnel,Thoracic Outlet Syndrome, Trigeminal neuralgia , bilateral neuropathy of the feet and total back pain...I have lost 50 lbs...there are very few forms of exercise I can do

anyway the leg pain at least 95% on the right side, first thought was
sciatica, phisical (spelling) by the Dr was a yes then after nerve conductivity tests, mylogram, and another where they insert needles in the muscles of your leg push down like on gas pedal (did a scream on that one) all showed nothing

my Dr reviewed my MRI's noticed a mass at the base of my spine we were both hoping it was lipoma (spelling) fatty tissue that can be removed and the problem taken care of, nope it was a bundle of varicose veins!

my Dr found an expert to treat me, but he won't take my insurance

sometimes my leg gives out on me, feels like someone reaches and twists everything inside my leg, terrible sharp stabbing pain and for the rest of day the leg throbs, I'm a side sleeper I can't do that anymore, it hurts like ***l even after I change postions...when I wake up I have to get out of bed slowly it doesn't want to support my weight...I can have throbbing, ache all day long or no pain.....had an incident last week the right calf was screaming in pain and my break through med Dilaudid didn't touch the pain, called my Dr sent me to the ER thinking it was a blood clot, it wasn't all blood work came back normal, 2 injections of morphine, then 2 of dilaudid...made the pain go from a 9 to a 3 went home, never found a reason for it

I take 125 mcg of fentanyl patch, valium for muscle pain, & dilaudid for break through pain.....plus topamax and neurotin and trazadone for sleep...I can't remeber the last time I slept through the night, pain wwakes me single night...I use meditation & relaxation cd's every night, do the breathing tech. just Joined the YMCA thinking swimming would be good, came away from the class and the next day I was taking my dilaudid every 4 hrs

I am at my wit's end, I don't have the money to go special clinics, I'm on SSI because of all of these

I don't know what to do anymore, I'm so fed up w/the pain....it runs my life, can I drive today because of a med I took, do I dare pick up that bag of grocies etc

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8 Replies:

  • oh try to im me at hopespringsanew@yahoo.com, or email me...I just happened to run across your post and thought "oh my god"...I can't get a diagnosis and then I lost my insurance....lower back pain, calf pain, hip/upper thigh pain...take a step and lose my balance and fall unexpectedly....leg weakness....when REALLY bad my foot hurts so bad I thought it was broke one time...anyway try to contact me
    Anonymous 42,789 Replies Flag this Response
  • Just to let you know that youre not nuts. I have this amazing hip, upper thigh, lower back and leg pain that noone can seem to diagnosis. I have thousands of dollars in doctor bills and tests run in the past year. Had the myelogram, two mris, ct scan and TONS of xrays. Was told DDD, some problems in L4L5,L5S1, arthitis, slight scolocis, but nothing that should be causing the pain that I'm having. It's quite depressing actually. So I feel for you.
    hopespringsanew 5 Replies Flag this Response
  • look up spinal hemangioma..it is prevalent in females middle range of age. Cedars-Sinai has a program for it's patients diagnosed with it. Doesn't that doc do any pro bono or charity cases? Find a doc through your insurance company. They can actually help you.
    rad-skw 1,605 Replies Flag this Response
  • My husband had surgery in 01/07 due to injury from work and has been on workmans comp every since. Well we recieved notification that due to his time on workmans comp for so long that they were cancelling our family insurance, so I can't afford to go back to the doctor. I hadn't thought about Pro Bono doctors. If anyone has any idea of where I could find one let me know. I live in SouthWest Virginia. Thanks
    hopespringsanew 5 Replies Flag this Response
  • Dear SW Virginia, Take Charge of your own healthcareDevelop your own exercise/nutrition programTake on day at a timeKeep a positive attitudelaughThese are the 7 stepsgood luck MC
    Anonymous 42,789 Replies Flag this Response
  • I think all of you should read up on Arachnoiditis and/or Cauda Equina Syndrome. I am pretty sure I have this & cannot get a proper diagnosis either. I researched all my symptoms for 3 years & feel confident. Especially if any of you have had back surgery,trauma, the old oil based myleograms, epidurals or steroid injections. Many Drs will not recognize the name or admit to this because in some cases THEY gave it to you. Some tests fail to show it. For example an MRI without contrast is useless. It is incurable but is dealt with by proper pain relief depending on how far it has progressed in each individual. I could go on & on. Please research all you can, present printouts & if they blow you off, see someone else. It is a dirty little secret & even a young women having her first baby, getting an epidural, risks the rest of her life in pain. Many Drs fail to really let people know risks of shots & surgeries so they can make an informed decision. They do not know of the miserable pain of which we speak. It is an invisible illness. Join COWFA. You will get much valued info.
    Anonymous 42,789 Replies Flag this Response
  • I have had chronic leg pain similiar to yours after beginning topamax about six months ago. I am beginning to think that topamax is the cause. I have completely had to alter my life including quiting my high paying job, because of the pain.
    Anonymous 42,789 Replies Flag this Response
  • Why were you originally prescribed Topomax? Alot of drugs have many side effects the general public is not aware of. There are a number of Drs who push certain drugs because of all the behind the scene benefits we know nothing of. This may or may not be the case.
    Anonymous 42,789 Replies Flag this Response
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