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06-22-2018, 02:19 AM | #1 | ||
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I’m new here too. I got my biopsy on the nhs - my neuro wrote to Professor Anand at Hammersmith asking for the biopsy and included copies of my clinic notes and I got an appointment letter two weeks later. I had the biopsy last week. Wait time total of 4 weeks. Good luck. |
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06-22-2018, 06:19 AM | #2 | ||
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Mine are mild, and i'm young (for PN), so that's why I expect a battle...but i'm thinking after 2 years, I at least need to be able to rule something in or out...it's no good, whatever this is, starting to progress in 2 more years and I could have stopped its progression! |
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"Thanks for this!" says: | Loucharj (06-30-2018) |
06-22-2018, 05:02 PM | #3 | ||
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06-23-2018, 06:18 PM | #4 | |||
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My symptoms began with what I thought was Restless Leg Syndrome. A few months later began the burning in my legs and hands, tingling and random stabs of pain which are symptoms of SFN. But now I do recall that I would be sitting in bed watching tv with my husband and I would get these strange movements in my upper arm. I felt like I had been possessed. My husband would watch in disbelief. Sometimes they would occur above my knee. They would usually last about 5 minutes but sometimes they would go on for more than an hour, go away, and then come back on the other arm or leg. They went away after a few months and I had forgotten about them.
Four years later and what I'm left with is burning in my shins, left hamstring and lips. It's always present, but the degree differs. I also have RLS sensations some nights. Enough to wake me up, but if I stretch out the muscle it will usually go away. I take something to sleep most nights so it's hard to gauge how bad it really is.
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"Sometimes I've believed as many as six impossible things before breakfast." Lewis Carroll |
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"Thanks for this!" says: | DavidHC (06-29-2018) |
06-25-2018, 03:54 AM | #5 | ||
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I am sorry you are suffering. I suppose the only hope is, that as you're sti;l young, all the medical advances will one day be able to help (I know not a lot of money is spent on SFN research, but maybe MS research will hold a key). In terms of me? Well, I haven't really noticed it during the weekend, and had to think about it a couple of times (it's still there of course). So, given my sentence above compared to how much pain you are in, why should a GP give me an appointment to get a skin biopsy when there are so many people more needing than myself. I wouldn't and shouldn't! |
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06-25-2018, 12:22 PM | #6 | |||
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"Thanks for this!" says: | DavidHC (06-26-2018) |
07-02-2018, 04:46 AM | #7 | ||
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I have noticed a slight burning my left foot and other issues over the past week and a bit, but am putting that down to my brain. Just way too much of a coincedance. But will book a GPs appointment. |
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"Thanks for this!" says: | echoes long ago (07-02-2018) |
07-02-2018, 12:02 PM | #8 | |||
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Burnsie you are as important as anyone else. take good care of yourself and advocate for yourself because no one else will
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"Thanks for this!" says: | DavidHC (07-03-2018) |
06-27-2018, 08:31 AM | #9 | ||
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If oh want the biopsy why don’t you go for it? Could find a cause and potentially stop any progression? |
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"Thanks for this!" says: | echoes long ago (06-27-2018) |
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