[Shezian]

Hi again

Is there anyone in here my age or younger?

Does it mean if l have PN younger I will in massive pain at a younger age?

How do you all deal with this?
It all just seems so negative from here.

Sorry but this is very depressing. I am normally a very happy person, but now l am worried and waiting for the sharp pains everyone is talking about.

Sue

[mrsD]

Not all PN progresses seriously. The inherited types typically do,
but the others can be managed.

If you have a secondary cause-- like impaired glucose utilization, or some food trigger, a nutritional deficiency, or a drug trigger, toxin, autoimmune, thyroid, etc,
you can remove the trigger and stabilize. Fixing the cause often fixes the PN for the most part.

Viral triggers may wear off with time if that is your problem.

You need to be a detective of sorts to enable proper treatment and help your doctor find a cause. That is what this forum is for.

[Susanne C.]

Originally Posted by Shezian

Hi again

Is there anyone in here my age or younger?

Does it mean if l have PN younger I will in massive pain at a younger age?

How do you all deal with this?
It all just seems so negative from here.

Sorry but this is very depressing. I am normally a very happy person, but now l am worried and waiting for the sharp pains everyone is talking about.

Sue

Mine started in my early 30's with numbness in my toes, but actually the earliest symptoms were from childhood when I was impossibly awkward and clumsy. Mine is one of the hereditary neuropathies, and my extremely complicated parentage (adultery) meant that no one made the association between my half sister who wore leg braces and the fact that I couldn't run, skate, play sports, and only learnt to ride a bike with great difficulty. I also wore my shoes out on the sides, which I was punished for. I was made fun of by my family and other kids all those years.
I was afraid to mention the numbness to my doctor because all I knew about neuropathy was that diabetics got it and I was terrified of diabetes. When it reached my ankles in my mid 40's I finally brought it up. By that time my hands were also affected. I developed a severe infection from an unnoticed wound in my foot. The podiatrist who treated it refused to see me again until I had been evaluated by a neurologist. She, (the neurologist), was pretty certain it was CMT, but sent me to Johns Hopkins for second opinion and skin biopsy. I had more blood tests and one of the Athena tests for genetic neuropathies, HNPP, since I have pinched nerves. I decided, together with my neurologists, not to pursue testing.
So mine is slowly progressive and untreatable. I am 50 now. I walk with a hiking pole, and have difficulty driving more than a few miles due to cramping and weakness. I still have 3 of my 5 children at home, and my daughter has a new baby and needs my help. I taught high school English this year for the first time as I have been a stay at home, homeschooling mom all these years. It was a mistake. I am exhausted from getting up so early and dressing up and putting on makeup. I have to carefully plan my day and my resources.
I don't know if this helps. You seem to be in the early stages of being diagnosed. You may well have a treatable cause or one that responds to supplements. You can find workable pain relief, although you may never be totally pain-free. I am on 1800 mg. of gabapentin and low dose oxycodone as needed, which is more often lately, so I may need to switch to a patch or something. If yours is one of the untreatable ones, like mine, they usually progress slowly. Try not to panic. You will get some relief, some answers, and you will learn how to live with the disease if that is your lot. Yoga, stretching, walking, any non-stressful movement is helpful. I would not run until this is fully diagnosed. Any injury on top of your current symptoms will only complicate things. Good luck.

[Sallysblooms]

Try to focus on research instead of worry. I like to channel my worry to learning and healing. Finding an integrative MD is good too. They usually know a lot more about healing vs just giving meds like reg. docs. They are MD's so they can give meds, but they are usually very interested in healing and finding the cause.

There are many things you can do. There is also hyperbaric chambers that are used for neuropathy to bring microcirculation to the tiniest of nerves and vessels.

Always keep learning.

[Shezian]

even though it's reality, when l hear stories like Susanne, which l am deeply sorry for her having to suffer like this. It seems like you have it I your genes. I don,t think that is the case for me at all. So hopefully at your age, l will be able to drive and walk normally. Even though it is sad what you are going through, it these kinds of stories l need to out out of my mind in order to try and stay positive and push through this. My mum said to me last night on the phone that people that think about this all the time tend to get worse, and she believes the body has an amazing ability to heal itself. Also, she said not to speak to people who are negative and to not look at this as and end to life. good advice , But it is all still very, very scary of the unknown of what is coming next.
Again, it just seems like everyone that gets NP just gets worse and worse, and it hard to be positive and hopefully when its all terrible suffering.


For me since l have got burning feet nearly just over 9 days ago, the heat has changed to my palms of hands only at night and when l walk my feet hurt. I have muscle twitches last night but the burning has gone. I have been soaking my feet before bed in Epsom salts and taking muti and b1. Still waiting on bd,old tests to come back to see if l am deficient in anything else.

Sue

[Susanne C.]

You have probably already mentioned this, but you aren't on any statins or triglyceride medications, are you? Nothing recent?
And I am just really glad that I was able to take care of my family for so many years before it became limiting. You will be able to too!
Read everything, but don't assume your situation will be just like anyone else's. Everything seems scary in the beginning, but becomes more manageable as knowledge increases and fear decreases.
Incredible knowledge, experience, and patience on this forum.

[Shezian]

On any kind of meds and never have and never want to be.

Glad you were able to bring up your family, but it is important to enjoy them now as l don,t think your very old at all. Plenty of time still left in life to achieve.

Sue

[Dr. Smith]

Originally Posted by Shezian

My mum said to me last night on the phone that people that think about this all the time tend to get worse, and she believes the body has an amazing ability to heal itself. Also, she said not to speak to people who are negative and to not look at this as and end to life. good advice , But it is all still very, very scary of the unknown of what is coming next.
Again, it just seems like everyone that gets NP just gets worse and worse, and it hard to be positive and hopefully when its all terrible suffering.

Sue, I agree with your mum 110%. It is not good advice; it is excellent advice! As I mentioned previously, stress, worry & fear can exacerbate symptoms, and even create more, including those of a psychogenic nature. (Psychogenic symptoms/disease are every bit as real as organic ones in the physical effects they can have, and are not to be dismissed or treated lightly/disrespectfully.) There is a well documented vicious downward-spiraling cycle of pain, insomnia, & depression, and it sounds to me like you may be heading for it.
Google: "vicious cycle" pain insomnia depression

I've been there, and it can be beaten too.

Everyone who gets PN does NOT get worse (and worse); most prognoses are not that bad:

Effective prognosis and treatment of peripheral neuropathies relies heavily on the origin of the nerve damage. For example, peripheral neuropathies caused by vitamin deficiencies can often be halted -- even reversed -- with vitamin therapy and an improved diet. Likewise, nerve damage brought on by alcohol abuse can often be improved by avoiding alcohol. Peripheral neuropathies caused by toxic substances or medications can often be corrected in much the same way. When neuropathy is related to diabetes, careful monitoring of blood sugar levels may slow its progression and curb symptoms.
http://www.webmd.com/brain/understan...athy-treatment

The earlier people are diagnosed and treated, the better their chances of halting/reversing damage and progression, and you've only had this a very short time compared to most folks.

While I cannot find exact figures at the moment, with many people, PN progresses to a point, and then stops progressing further, or progresses at a very slow rate. Mine has not progressed any further than the soles and front half of my feet, and has actually gotten better, despite being idiopathic (of unknown origin).

The main reason it may seem it's all terrible suffering is that you're on a support group, and support groups (no offense intended to anyone here) tend to be populated by people who have a condition worse than average. The people who are average or above may come for initial information and support, then learn to manage their conditions, and get on with their lives.

There is a "Sticky" thread at the top of this forum: Neuropathy does improve that may shine some light on things for you. But you don't/won't see most success stories either here or anywhere on the web, because people who beat it and/or get on with their lives don't have need of support groups, so they have no need or reason to post or get involved.

Please, listen to your mum on this one. Find ways to distract yourself until you get those results. Get involved in something, spend time with your kids, whatever.

Sincerely, and best wishes, and...

[Shezian]

For everything you said. This means so much to me. It's music to my ears.

I agree with you, l need to keep busy, to get my mind of this and stop driving myself mad.
Today we went out for a drive and it was great to get out and I'd something a bit different. Even though this morning l woke up feeling floaty, and kind of out of it a bit, l still tried to remain positive and move on.

Last night for the first time since getting hot feet l slept without having my feet elevated. Slept well, but wake up too early and go to bed too late, and am exhausted, but still more positive today than yesterday.

My mum is great and she gives great advice, and l need to embrace it.
My husband thinks the same as you, and says to me often to panick too much about things on the web. He knows l can get completely anxiouse reading all the information about PN? He thinks l have blown it out of proportion. That l haven,t even been diagnosed yet.

My poor girls haven,t had much a mum lately as my mind is only on PN.

But after reading what you wrote, l am now going to move on with more hope and positivity and go back to being present with my girls. I am so glad to hear yours hasn't progressed. You have no idea how good it is to hear this.

Can l just ask you how long have you had it?

Also, just your opion, do you think it is safe me to have 1-2 wines tomorrow for my birthday? Do you think l will damage more nerves?

Thanks so much, l really appreciate your views which have made me feel so much better.

[dotmo68]

Originally Posted by Shezian

Hi again

Is there anyone in here my age or younger?

Does it mean if l have PN younger I will in massive pain at a younger age?

How do you all deal with this?
It all just seems so negative from here.

Sorry but this is very depressing. I am normally a very happy person, but now l am worried and waiting for the sharp pains everyone is talking about.

Sue

I am only 43 and tend to have the same fears. My neurologist ruled out all underlying causes, and believes it hereditary because my mother had it. I watched my mother suffer for a long time with this and it got worse and worse.