Undiagnosed and rare conditions
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Spinal gastro problemyst at the bottom of my spine

DianeWa32669709DianeWa32669709 Member Posts: 3 Listener
Hi,
im new to this discussion, I have been suffering with spinal pain since September 16. I have been seen by numerous consultants, however there just missing the point. I explained that I am suffering with excruciating lower back pain and gastro problems, I’m on pregablin but that doesn’t really help. I am debilitated every day and have very little energy. I have just been informed that I have three Tarlov cyst which I was only recently informed I thought that  had one but it turns out to be 3. I’m terribly forgetful and find that I stumble with my words, it has effected my nervous system and bladder, every where in my joints hurt. I have a distended abdomen and look like I’m 6 months pregnant. It’s so annoying as the drs seem to ignore what your telling them. I have become more or less housebound, and been told that an operation would be to dangerous as the area is to complex.I have found meditating helpful. Just wanted to share this with all who suffers this agonising condition☹️

Replies

  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @DianeWa32669709, and welcome!

    Thanks for sharing this with us, and I'm so sorry to hear that you're struggling at the moment. You might like to chat with @galvin66, @misscfarnell and @Backhouse, who have all mentioned experiencing spinal issues before, and you may also want to get involved with our chronic pain discussions. Hope this helps, and do let us know if we can be of any assistance!
  • DianeWa32669709DianeWa32669709 Member Posts: 3 Listener
    Thank you very much.
  • sleepy1sleepy1 Member Posts: 299 Pioneering
    Hello Diane
    When are you due? : ))

    Joking apart I have had similar problems since 2011 and much of what you describe very much apply to me also. Trouble is when it comes to rare conditions I think even the best specialists in the World don't really have much of a clue.  Very little funding goes into research and because unlike things like cancer or heart problems there is not much financial incentive for big pharmas to help people with rare conditions.

    I was diagnosed with GBS a rare condition but then got changed to another rare condition CIDP then back to GBS or it could be a spin off to something called mad sam??? Now the docs just prefer to call it some type of polyneuropathy. (think that comes under the the umbrella of unspecified nerve damage of some sort). Not so rare!

    This is the first time have heard of Tarlov Cysts and glad you have mentioned it and hope others who have been diagnosed will add to this thread that have some knowledge, in the mean time keep well.

     
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