Conversations

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  healyalicia92 | published 20 days ago | Originally written in English My Story

  Please read my story: Not only have I been inflicted by one rare disease, but TWO rare diseases. A story of hope and perseverance.
  www.gofundme.com/aliciahealy
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  SharonBasc | published about 1 month ago | Originally written in English Pennsylvania

  I am looking for people in Pennsylvania with HSP that I can talk to and see what they go thru with their HSP
  Thanks
  Sharon
  3 replies to the topic — see all replies

  • 
    robpleticha published about 1 month ago | Originally written in English

    Hi Sharon,

    Check out this link from the Spastic Paraplegia Foundation: www.sp-foundation.org/events.html

    There is a group in Norristown, PA and a contact email on that page.

    You might also be interested in SP Foundation 2012 Conference in Virginia.

    I will also forward your message along to a contact at the SP Foundation and see if they have additional ideas.
  • 
    SharonBasc published about 1 month ago | Originally written in English

    Thank you so very much! Finally ... People that I can share with
    Be well sharon
  • 
    healyalicia92 published 20 days ago | Originally written in English

    Hi Sharon, I am from the Philadelphia area.
• 
  rebeccabietz | Edema | published 3 months ago | Originally written in English Edema in feet

  Does anybody have edema in their feet from HSP. The doctor has increased my lasix to 80mg and it doesn't seem to make a difference they checked my kidney function and that came back ok. My right foot is 3 times the size as the left. I fell 3 times in one day in mid January and injured my right ankle and I have had x-rays and MRI(Brain, thoraic, spinal) done since then and they were clear. The swelling gets so bad that my feet burn and elevating them does nothing
  3 replies to the topic — see all replies

  • 
    rebeccabietz published 2 months ago | Originally written in English

    Update -- the dr switched to a different diuretic and I have lost 20lbs in a few days. Now it is a wait and see if the edema returns after I am done taking Bumex. I guess sometimes a person will build up tolerance to a med. If the edema returns more test will be ordered to figure out what is happening
  • 
    afickler published about 1 month ago | Originally written in English

    I HAVE PITTING EDEMA IN MY FEET AND ANKLES! THE FIRST EPISDODE, (Feb 2012) LASTED FOR SIX DAYS STRAIGHT!! THEY PUT ME ON MAXZIDE 5mg ONCE A DAY... I HAVE HAD IT COME BACK TWICE SINCE THEN (both episodes only lasted 1-2 days, both times). I HAVE HAD AN ECHOCARDIOGRAM, RENAL FUNCTION TEST, LAB WORK, AND SO ON... AND NO ANSWERS. WHEN IT CAME BACK THE SECOND TIME THEY MADE ME START WEARING TED HOSE (during the day but not while asleep)... MY DOCTOR SAID IF IT CONTINUES WE WILL DO MORE TESTING... PLEASE KEEP ME UPDATED IF YOU DETERMINE THE CAUSE OR FIX OR ANYTHING & I WILL DO THE SAME!
  • 
    coachddb published about 1 month ago | Originally written in English

    My husband has had very significant edema in both feet, getting worse over past few months. Diuretics did not help. Long story short, he eventually had an ultrasound to determine whether he had venous insufficiency or not. He did, which means that the valves in his vein(s) were no longer doing their job and this allowed the blood and fluids to get trapped in his feet and ankles.( Not a direct symptoms of HSP, but a secondary issue due to more sitting, less walking and not much ankle motion when he does walk.) Last week, he had a radiofrequency ablation of the right leg. This was a quick and painless procedure done in the dr's office and we were back on the road within an hour. Has to wear compression socks for 2 weeks, then will have the other leg done. So far, remarkable reduction in edema.
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  SharonBasc | published about 1 month ago | Originally written in English Seizures

  Does anyone have seizures related to their HSP?
  Be well
  Sharon
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  robpleticha | published 2 months ago | Originally written in English New type of HSP recorded in Australia

  www.theleader.com.au/news/local/news/healt...

  The article mentions the Australian HSP Research Foundation, which I had not heard of before: www.hspersunite.org.au/
• 
  dave | Coping strategies | published 3 months ago | Originally written in English Looking to talk to people with mild hsp and share experiences

  Hi as the title says im looking for people with mild hsp symptoms as it seems quite rare.

  in my case i have stiff legs and pes cavus feet which causes me the most problems even with orthotics . I work and have a normal life ,however on a night after work and on weekends i just want to rest. Which brings me to my next problem which is friends and family thing im just grumpy a d lazy as i dont feel like being on my feet unless i have to, which just adds to the frustration to me.

  Anyway i would like to hear from other people with similar problems and how you cope with them.

  Many thanks dave
  4 replies to the topic — see all replies

  • 
    dave published 3 months ago | Originally written in English

    Hi kerry sorry to hear you have hsp , i did exactly the same as you when i was told researching and trying to quell my own doubts (i still have many).The next step for me is to try to give the orthotics a chance before looking at any form of drugs as I'm paranoid that once i rely on drugs the disease is going to progress without me being aware of how bad its getting.I might sound silly but it at least gives me some illusion of control.

    Anyway i hope you find a way to cope physically as well as mentally which i find the hardest out of the two.

    many thanks
    dave
  • 
    twinmom published 2 months ago | Originally written in English

    Hi Dave.....I have been researching and trying to find more information. Lots of people recommend getting physical therapy and that has been really helpful to folks. I hear you on the drugs.....and I wonder if I'm "bad enough" to require meds....who knows? Anyhow, I am going to look into the orthotics and ask for a prescription for PT. Figure it is worth a shot. I have had a sudden progression in this past month and broke down and bought a cane for night when its the worst. It hasn't been so bad using it at home. Helps take some pressure off.

    There is a Hereditary Spastic Paraplegia Foundation that has a listserve for people with this. I just signed up a couple days ago and have already found it helpful. MIght check it out also! Take care!

    Kerry
  • 
    dave published 2 months ago | Originally written in English

    Sorry to hear your getting worse I hope pt works for you.I am struggling at the moment mentally and am really down and feel trapped as I earn a decent wage I have a big mortgage etc however I don't think I can do my job for much longer and cannot afford to retrain and still support my family.I cannot even sell the house as in the current climate its not worth what I owe on it.

    Sorry for being so depressing I hope you find something that works for you.

    Many thanks dave.
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  dave | Baclofen pump | published 2 months ago | Originally written in English can you use baclofen if you have a physical job (electrician)

  Hi as the title says does anyone know if you could use baclofen if you do a physical job as I've been prescribed the drug but have read it can effect your ability to balance and make you lightheaded. This obviously would be no good for me as I work from ladders and with live circuits, however the fatigue and pain my legs and feet give me is really bringing me down and effecting my family time.

  Any advice would be much appreciated.

  Many thanks dave.