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Opinion on what type of PN I have

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Old 10-31-2013, 10:19 PM #1
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No don't worry about it. You didn't say anything wrong, I'm just emotional right now.
I enjoyed your last response. It was helpful and gave me hope.

I too can sometimes be blunt and just say exactly what I'm thinking before considering what affect it may have on the recipient. I understand that. I did have a panic attack but have clonazepam and am better now.
Definitely have SAD. I'm moving soon,so that's a stress, cleaning sustains me but hurts my body. I'm not being paid on time by my boss , which doesn't help.
I have a personality disorder as well, so between that and the horrible pain from neuropathy, I am nearly always upset or in crisis.
My case worker cancelled our Monday appointment, but I have friends and family to call if needed. I'll try to stay close to people for the next little while.
I tend to get extremely low but then bounce back with a resilience that sometimes surprises me.
I am quite frankly darn proud of myself for getting this far.

This group is helpful, and the Facebook support group for pn is even more helpful as there are fewer members and it is more about support than information.

I'm rambling, so to sum up-thank you Susanne. You're a strong woman and I admire you coming online to help others like myself. I will most definitely keep you informed about any discovery regarding CMT in the future. Probably in December when I meet the best neuro in my city.

Silver
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Susanne C. (11-01-2013)
Old 10-31-2013, 10:25 PM #2
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At the bottom of this depression is the pain, right? So start by fighting this pain. Even if you don't want to quit smoking, I just don't know how your body can fight disease with all those poisons in your body. I think that any reasonable doctor would tell you to quit, yes even if it's hard. What is your diet like for a day?

I highly recommend everyone listen to these podcasts:
http://www.beatingneuropathy.com/
If there is one of these clinics in your area, you might try checking it out.
Ron


Quote:
Originally Posted by lined_in_silver View Post
...
Smoking is my only vice, really. I don't know what to do with myself otherwise. I live alone, and am very high strung. I don't drink alcohol or smoke pot. I don't have a husband or children, or a career, or pets. I have nothing, really..
...
I am hypoglycemic so I have to have sugar often. I studied nutrition for two years so I know all about food. I'm finding that one of my meds is making me only want to eat carbs and sugars. Amitryptaline. Dinner foods don't interest me and actually turn my stomach.
...
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Old 11-01-2013, 11:16 AM #3
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Have you had your Vit D checked?
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Old 11-01-2013, 10:03 PM #4
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Quote:
Originally Posted by lined_in_silver View Post
I don't have a husband or children, or a career, or pets. I have nothing, really..
Is there a reason you can't have a pet? It might be a wonderful comfort for you. With financial limitations, or if you have allergies, I could suggest a rat! I've had them in the past and they are sociable, low-maintenance pets. These days I have an elderly rabbit who loves to be held. Since I've been making an effort to hold and pet her for an extended period every day, I find that it's at least as comforting for me as it is for her.

If possible for you to volunteer at an animal shelter, that's another good way to get a nice stress-reduction "fix."

Like many others here, I totally relate to and sympathize with your frustration in dealing with doctors and trying to get a diagnosis. Wish you the best.
Last edited by dogwalker; 11-01-2013 at 10:04 PM. Reason: clarification
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Old 11-02-2013, 03:14 PM #5
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Quote:
Originally Posted by lined_in_silver View Post
Hey everyone - I hope you're all well and healing .
I haven't been on the forum in a while , due to working so much !

Anyway I've been sick for 3 years with nerve pain and numbness - was diagnosed this spring with Pn by way of nerve conduction study by my neurologist who just can't believe I have this at age 30. It does not run in my family.

I understand that there are many types of PN. I am desperate to find out which type I have. I do have some autonomic features - mainly my bladder goes nuts and feels full and irritated ( this was my first symptom 3 years ago)
I have severe bi lateral carpel tunnel which I am curious to know if this is common with Pn

Circulation seems to be poor , especially in my legs ( socks can't have tight elastic, and tights cut off blood flow very easily leaving my ankles purple . In the winter my hands and feet freeze immediately . I got frostbite often as a child. My thighs itch if I go for walks.

Burning is the most prominent symptom, and it seems to be even on both sides of my body. This included my stomach ( so strange , it's almost like having heartburn but much lower ) - my tummy is sensitive to the touch. If I bang my hand or foot the pain response is very exaggerated. My thighs burn, and are weak and crampy. My arms and back ( sort of up my spine ) burn.


Hands are numb in the morning for about 5 minutes and my arms are weak . I'm very thin, and I seem to have very All blood tests are normal. LOW Blood sugar, low iron, good b12, have tested Vit E, Lymes, lupis, brain MRI for Ms, ultrasounds , MRI of tailbone ( had insane pressure and burning for a good 6 months with sciatica, but nothing showed up on the scan ). Thyroid is fine. Hyper if anything. I haven't touched alcohol in a year and a half.

Some ppl have suggested this is psychological or spiritual which I find hard to believe.




I hope someone can provide some insight or any help. I need to get to the bottom of this - it has really changed my life.


Best,
Silver
I am just bumping up the original post here to get this thread back on track. When a member has clearly stated that they are not seeking advice in a specific area, no matter how important others may feel that is, it is respectful to heed their request and let that issue alone please.
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