Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Peripheral Neuropathy

Discussion in 'Peripheral Neuropathy' started by Nielk, Aug 14, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If herpes viruses are commonly implicated in cfs/me, then these viruses love to hang around nerves and cause problems especially if reactivating etc etc

    Autopsies of people with ME have shown that there is alot of lessions on the nerves consistant with shingles type infections.

    Many of us get diagnosed with restless leg syndrome but i think mostly its a type of neuropathy and many of us get a similar type of pain in our backs and necks that sound alot like nerve pain.

    Sorry about your new diagnoses neilk, maybe this could explain some other symptoms. I wonder if the tumor has something to do with ME, many wouldnt have had head scans, i wonder if it would be a relatively common finding in cfs/me. I hope things get better for you sooner.

    cheers!!!
     
  2. taniaaust1

    taniaaust1

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  3. ahimsa

    ahimsa Sick since 1990

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    Nielk, I just saw your post. So sorry to hear about this new finding.

    I'm sending you many :hug: HUGS :hug: and hope you're doing okay.

    Marjorie
     
    Nielk likes this.
  4. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

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    Hi. Yes I have neuropathy. I had Glandular Fever in 1984 and developed Peripheral and Autonomic Neuropathy in 2007. I have extensive inflammation and damage from toes to throat and it's affected my internal organs, including heart and liver. Doctors blank me because I don't have diabetes and no one seems to know anything about it. All I have learnt has been off the internet and from Dr John Hayes who treats people with neuropathy. He has advised on tips and diet etc.
     
  5. snowathlete

    snowathlete

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    Nielk I just read this thread. Sorry to hear about the tumor. How is that situation now?

    Regarding the main topic, Bartonella can cause this, and especially likes the legs and feet. Because Bartonella affects small vessel blood flow and they feed nerves it can cause issues. I don't have more info than that but I heard it on a recent online radio interview with two of the top Bart doctors
     
  6. Nielk

    Nielk

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    I really think I should be checked for Bartenolla. It's next on my list.

    As far as my tumor snowathlete, (thanks for asking) I had radiation treatment done six months ago. I will have to get an MRI done though again in six months to make sure that it was successful.
     
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  7. snowathlete

    snowathlete

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    I hope it's all gone and problem solved! Sounds like you caught it relatively early perhaps.
     
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  8. *GG*

    *GG* $10 gift code at iHerb GAS343 of $40

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  9. soxfan

    soxfan Senior Member

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    I had Bartonella which caused the nerve pain and twitching in my calf and foot. Since I went undiagnosed for over 2 years even with treatment I have permanent damage. I will always have the pain and twitching to some degree. Some days not as bad as others....
    It was my first symptom back in 2004 and the doctors had no clue what the problem was. I had all kinds of tests including EMG...etc. They gave me Neurontin and told me there was nothing else they could do..
     
  10. Shell

    Shell Senior Member

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    Don't know if it's the heat, or what, but the PN at the ends of all my fingers is spreading, especially in my right hand down the front of my fingers to the the first knuckle.
    Anyone got any ideas if this is stoppable?
     
  11. southernwonder

    southernwonder

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    I have peripheral neuropathy in both feet which started this year after an incidence of swelling. I didn't know it could be related to CFS. I take gabapentin for it and it works nicely. What could I be taking to repair the nerves, as the gabapentin makes me groggy?
     
  12. Shell

    Shell Senior Member

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    My PN is slowly spreading. Don't know why. It was just the ends of my fingers but it's spreading downwards.
    Great for getting the toast out for the kids, not so great for handling stick insects and silk worms.

    Also does anyone have a weird grip? If I hold a cup with my hand over the rim kinda claw grip I frequently find I can't let go. Someone has to prize a finger off then the others will follow.
     
  13. wanttorecover

    wanttorecover

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    What treatments are available? I have had a neuropathy that has been constant for over two years now and would lover for it to go away.

    I am going to ask my GP for Vitamin B 12 injection next time I see him as my diet is very poor maybe that will help.
     
  14. physicsstudent13

    physicsstudent13 Senior Member

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    I don't know if it's worth buying methyl b12 for nerve damage. I think I'm going to stop the methylfolate after I run out
     
  15. August59

    August59 Daughters High School Graduation

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  16. August59

    August59 Daughters High School Graduation

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    There is a new drug out for neuropathy and Fibro called Savella, but it cause anxiety in a lot of patients taking it. It is considered a SNRI, but it's affinity for norepinephrine is 30:1 over serotonin, whereas Cymbalta is only 3:1.
     
  17. alex3619

    alex3619 Senior Member

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    Swelling and PN go together, as the nerves involved in PN often help regulate blood flow.
     
  18. alex3619

    alex3619 Senior Member

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    For the last several years one hand very occasionally lockup in a tetanus like response, and will not release without manual force. I have considered it might be an early stage of rheumatoid arthritis, but I am very unsure about that.
     
  19. physicsstudent13

    physicsstudent13 Senior Member

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    is EDTA going to help peripheral nerves? I started 1 teaspoon a day from pure bulk powder and am concerned it may damage the kidneys
     
  20. skatardrummer

    skatardrummer

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    I suppose it is possible. My mom has CIDP and peripheral neuropathy. I'm going to see my dr because I have a large number of symptoms that are suspicious of CFS. I don't have neuropathy, but from what I've been reading, both are often linked to autoimmune issues, which both my mom and I have.

    It is really important to find out from your doctor what tests they can do to discover the cause of your neuropathy. There's some treatments they can do to help slow nerve death, but some conditions that cause it are treatable and some are not. I suppose it's better to treat the cause than the symptom first if you can. My mom does IV/IG treatments since her condition is noncurable. It's helped her maintain the ability to walk while a friend of ours who also has the same condition needs a wheelchair or walker because he did not get treated. Her condition has somewhat progressed and she experiences extreme sciatica. She is now on a Fentanyl patch. Again, her condition isn't curable, and she was persistent in finding out the cause so she could get properly treated. It can be a secondary issue caused by a lot of things, so if you're experiencing difficulty, keep looking for the answer.
     

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