I won't bother you with my particular case, you can read all about it in my previous posts, I just wanted to share some information about Neuropathy that may not be a relief, but at least it might help you understand(like it helped me) this condition a little bit more.
So here's a little bit of what I've collected after several neuro appointments, and hours or research here and there.
1. Neuropathy and it's symptoms can be caused, both from nerve damage(obviously), but also from nerve irritation/inflammation. This means that you don't need to get any of the usual neuropathic conditions like SFN, CDIP, etc. to experience full neuropathic symptoms.
2. Neuropathy is a dynamic condition, somedays are better than others, so you might feel "cured" one day and rush to the ER the next one. BUt in most cases you're not having a new episode and/or getting worse, it's simply a flare of your symptoms, that will eventually pass. Even in a recovery scenario, when it's possible, this can take years of a one step forward three steps back, recovery process.
3. Be patient, because, even in the best case scenario(a full recovery), this process is usually slow, and we're talking months and years kind of slow.
4. Almost everything and anything can make your symptoms worse. From medications side effects(yes even the ones you're supposedly taking for your neuropathic symptoms) to colds, anxiety, stress, weight gain/loss, you name it.
5. Nerves can be irritated or damaged(directly or indirectly) by almost everything: Diabetes, Autoimmune diseases, anxiety, medications, toxic stuff, virus, and the list goes on... That's why it's so hard to pinpoint the cause of a neuropathic condition.
6. Better to have a DX than to remain idiopathic. Even in the worst case scenario, you get a chance to get the right treatment to improve your condition, so keep on searching. If you fix the cause, you get a much better chance to stop the symptoms and their progression.
7. Don't underestimate Anxiety, because anxity alone, can mimic Neuropathy, and most of the time it flares up in tandem with it, making it worse to know which condition is causing your symptoms. Believe me on this, I thought I was ok on my anxiety side, but after rushing more than three times to the ER, with two fake heart attacks in the mix, I could really tell that I was NOT ok on the Anxiety side.
8. Small and large nerves are not completely isolated from one another, so you might have both motor and sensory symptoms even if you're diagnosed with a "pure" sensorial or a "pure" motor neuropathy. So it's not uncommon that you get to experience the "best" of both worlds.
9. It's much more probable that you're having an anxiety attack or a benign condition like BFS, rather than the rare case of undiagnosed MS or CDIP or(name your worst fear). The statistic chance to get the rare case of an already rare condition is so small, that if you do get this, you might think about playing lotto because you might become millionaire. If it helps you to get some extra relief, life threatening or dramatic/progressive conditions, are usually easier to identify than benign ones, so again, chances are that you're NOT the one in a million case with the rare presentation of a rare disease.
10. Unless you're in a dramatic stage, an sometimes even then, this is mostly an invisible disease, so expect little no none support from many people, including family members and unprepared doctors, which will label you crazy most of the time. Fortunately we have the boards to talk and rant with others in our same position, which is really a great relief.
11. Trust more in your informed doctor, than in doctor google. Informed patients like Aussie100, are also a great source of reliable information. But remember that every patient(and it's condition) is different, so whatever good or bad experience from somebody, doesn't necessarily translates into the same thing for you.
12. Exercise if you can, try the healthier way, because even if your neuropathy wasn't caused by diabetes, you don't want to become diabetic because you stay in bed all day eating chips and watching TV. I've done this in my worst days. But you don't need to get extra symptoms and conditions, just because.
13. Finally, because I don't wan't to make you bored to death with my post: KEEP ON LIVING. Whenever possible, travel, work, party, go to the movies, etc. I would say that most of the time the "just don't over do it" advice applies to all of this, but if you want to have THE party of your life, even if you pay the consequences for days, go ahead, enjoy it! We only live once.
Hope you find this useful or at least mildly entertaining.
The best for all.
Last edited by stargrave; 04-16-2012 at 08:20 PM.
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Spouse of Pain (04-29-2012)
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Hi, This summary is excellent. Great advice. Sometimes we need to go back & recap. Everything happens very quickly even though days are slow. I just found out Thursday that I have NSVN, the rare one so I will buy that ticket. The ticket I am hoping to win on is IVIG so it can help me, by slowing the progress of this disease. I am scared to try this treatment, first day Wednesday. June
Yes, this can caught you by surprise, one day you're ok and the next thing you know you're filled with symptoms and desperately searching for a cure, or at least for answers about this condition.
I'm currently on a quick flare up of my symptoms, pain, tingling, twitching, itchng, pins and needles, burning sensation, weakness, you name it, and they're everywhere, though my hands and feet are the most affected.
I blame both stress and a really heavy weekend, but as I've said before, you need to live....
Add all this to the mixalpitations, brief Blood Pressure spikes (148/88), extreme tiredness and sleepiness, aching body, feeling like if I've got some virus...I've got chronic allergic problems, clogged nose, and bad night sleep vs daytime sleepiness, up to the point that it takes just seconds, some time I don't even notice, for me to start dreaming...
I've fell asleep twice writing this post. Maybe it's because I also feel depressed, I really don't know.
Regarding your DX, yes is rare, you might go to get that ticket .
Just take into consideration that my point there is that most of us might have neuropathy, or not, always without a real DX, this make us believe that we ALL got some rare, often mortal, condition.
Back to your DX as rare as it is I've read this encouraging note on a site:
Nonsystemic vasculitic neuropathy represents one third of all vasculitic neuropathies. Prognosis is better than that of systemic vasculitic neuropathy.
Once again, a DX is the first step for a REAL treatment, and yes, maybe the IVIG treatment could scare anyone, but if it works, I've read of really spectacular improvements under this treatment, so I hope that will be your case.
The Following User Says Thank You to stargrave For This Useful Post:
This is a great post!! You are oh so right about the fluctuating realities of nerve problems!
Thank you for collecting the info and writing it out so concisely!
June: I wish you the very best of luck for Wed for your appointment. I am really interested in what happens during the treatment so when ever you feel up to it, please post and let us know how you made out! I think it is fantastic that you are getting some real treatment!! I was told just to go home and wait til I am wheelchair bound! So disappointing, but I really hope you have some success!! My thoughts are with you!
The Following User Says Thank You to daisymaegrl For This Useful Post:
What I came to learn, is that mild, moderate or severe, this terrible condition is something you'll never get used to, but I believe that it could help to know than "abnormal" is normal with nerve issues.
This may not help with recovery, but at least it might get you to cope better by not adding an extra coat of anxiety or suffering, because you're thinking you're actually worse than you are.
Enough weirdness this thing is giving us to let anxiety or fear to take an extra toll in our already affected quality of life.
Because sometimes the psychological impact of a relapse or a flare up can be as devastating as the conidion itself.
We will all keep on searching and praying for a cure, but in the mid time, we should try to carry on, the best way we can.