Opinion on what type of PN I have
 

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

Hi Silver,

Although I can't really help you - you seem to describe PN with some autonomic features and circulation problems to a T - I wanted to react to:

Well, these some people need a slap on the wrist! :rolleyes:;)

PN has nothing to do with all that. While our minds do play an important role in how we deal with the condition, they are not strong enough to "fake" a nerve conduction test or make us experience burning pain out of the blue.

Also, we do see more and more people who develop PN while they are younger; it's no longer a "50+" disease.

Do you do anything to help with the circulation problems?

I appreciate that you agree that you can't just dream up PN and develop symptoms (24/7 I might add). Its very frustrating to hear doctors always ask if I am stressed. Well yeah, I am very sick ! Tai Chi may help to a degree, but not enough to say that I shouldn't need pain meds. Sheesh!
I don't know what to do for circulation ..I tried aspirin and a herb called Ginko biloba ..but later found put that is more for cognitive function. Any ideas ? I am a smoker so that is one thing that is definitely working against me.

I was hopeful that I would get a little more input. Anyone ?
Thanks

Hello from Georgia :)
 

I didn't reply at first because you said it didn't run in your family, my experience is with hereditary neuropathy, but since you are looking for more comments, I will contribute my experience.
Hereditary neuropathies can appear as spontaneous mutations, also some people develop symptoms only when much older, which may lead them to believe it is something else, so it can be in your family without being identified. . You can develop quite serious symptoms with CMT at any age. I was clumsy and uncoordinated as a child, with restless legs, numbness set in in my 30's, pain increasing severe through my 40's. my neurologist thought I was too young for the severity of symptoms I had and sent me to Johns Hopkins for a second opinion, EMG/ NCS showed severe large fiber with muscle deterioration, skin biopsy devoid of nerve fibers at ankle, reduced above knee, and deteriorating at upper thigh. That was several years ago and I was sent away for pain management as it will progress and there is no treatment. The neurologists were done with me.
I do have bilateral severe carpal tunnel, and my hands are numb for several hours when I wake up, I cannot hold a needle or pen until around ten. The burning comes and goes for me now, but I am on Gabapentin and MS Contin, so my pain is greatly reduced from where it was. My upper thighs are where the burning is most noticeable, but my legs are almost completely numb to that point.

It does sound as if you have some autonomic issues, but hereditary neuropathy while primarily sensory/motor can involve almost anything as it progresses.

Please do not allow anyone to convince you that this is all in your head, or spiritual. Do you recall Jesus ever telling someone he healed that it was all in their head? Honestly I do not know where these people come from. PN is a very idiosyncratic disease and the reason you are not getting more answers is probably because we all have slightly different symptoms, but you certainly do have company here.
Unfortunately, while there can be improvement with some cases making lifestyle changes and using supplements, it is not often a curable disease, unless you have a specific cause- toxicity, nerve entrapment, etc.

I seem to recall you took Cipro alot?

If so you may have fluoroquinolone toxicity. This is DNA damage.
So using some acetyl carnitine (up to 2 grams a day) may help.

Magnesium too, as it helps the mitochondria. Any form other than OXIDE type.

The CMT issue can be triggered in people we know now from one study of a man who was triggered by Levaquin. His CMT was asymptomatic before the drug was given. CMT websites have drugs lists to avoid... so they know that drugs can make CMT worse.

Quinolone damage may respond to glutathione treatments, and magnesium. Dr. Jay Cohen MD has mentioned that on his website.
Glutathione can be stimulated with the supplement NAC (n-acetyl cysteine). There are liposomal forms of glutathione now available...very expensive but if you are suffering, you could try one of those. That is the only type that is absorbed from oral use.

Susanne- thanks for sharing your story. It sound familiar. Its not often I hear of other pn'ers with burning in the thighs like me. Or muscle weakness, severe bi lateral carpel tunnel, etc. I'm leaning towards cmt lately. As a child I got frostbite super duper fast, and in my teens had a numb patch on my upper back and weird sensations in my thighs when I'd exercise-itchy and tingly.

Mrs d-yes, I have taken cipro a couple of times for bad uti's. Also been on macro bid about a dozen.
These familiar supplements sound worth an honest try. I took a bottle of L Carnitine and stopped because of the expense. How is toxin induced pn diagnosed?

Also, since my nerve conduction study showed abnormalities, does this mean it is large fibre? That's how they diagnosed carpel tunnel. I also have no ankle reflex and high arches.

I could be one of the lucky ones with large, small, and autonomic involvement. It sure feels that way. There's no symptom I don't have. Although the only numbness I have is in my hands in the morning if I don't wear my braces.
I'd hate to think that doctors are disregarding my complaints because of my age.

I'll keep watching the forums and try to use the info at my big appointment with the best neuro in Ottawa in December.

I'm wondering what the best way to get the point across to my pain doctor is that the pain is unbearable and really can be everywhere. He tells me to do Tai chi and reluctantly puts me on a low dose painkiller.

I found a great support group on Facebook, if anyone is interested. Its called " support for neuropathy "

Peace and kindness

Do a little Internet research on talking to doctors about pain. I got badly burned on here trying to patiently explain to someone that they needed not to come off as a drug seeking maniac, which was how they came across on the forum, so I will not give advice personally, but doctors basically need to be convinced that your quality of life is affected. If you can take a family member to back this point of view up, that is better. Doctors are in a tough spot, they are not supposed to allow pain to be undertreated as it leads to more pain and debility,sometimes even heart failure or suicide, on the other hand they are strongly discouraged from prescribing effective medications. It is a delicate balance and we have to be very careful, making it difficult to have a meaningful doctor patient relationship.

I also used cipro and Tricor ( for high trycgycerides) and noticed a worsening of symptoms after each. The cipro was for a foot infection which had progressed to an emergency before I even noticed it. My balance did improve somewhat when I got off the Tricor.

I have had very high arches and absent reflexes since childhood. My eldest son, who also has CMT, has these symptoms as well. He has weak ankles and walks on the insides of his feet. I tend to walk on the outsides. You have enough symptoms to suspect CMT and an abnormal EMG is one of the tests for large fiber neuropathy. As the large fibers weaken the muscles die back which is where the progression comes in. My arms and legs are much weaker and I am unable to move my toes or the front of my feet at all. Trying results in muscle spasms.

If they determine that it is CMT it gives you some closure, but rules out pursuing treatment, so presents a dilemma. Good luck with your appointment, you are doing the right thing by learning all that you can first. I hope you have a compassionate and open minded doctor who knows how to listen.

I don't have an opinion on what type of PN you may have. I most strenuously suggest that you stop smoking. You can also improve circulation, and quite possibly improve your condition in general, by eating a very low fat plant-based diet, and by exercise, especially in the areas you are having problems. Anytime during the day, flexing your ankles, toes, etc. will increase circulation in those area. Also do some stretches in these areas.

You can find lists of foods that are the most likely allergens and pain triggers. For this, I highly recommend the book Foods That Fight Pain, Neal Barnard, M.D.

But in any case, I recommend a diet focusing on vegetables, starches, fruits, whole grains, and avoiding animal products, refined oils, and refined food in general. And exercise and manage stress. This is what people are using to reverse disease.

Ron

I can not imagine having a diet that included sugars *starches,fruits* in my diet now that I have pn. Those things make mine worse.

I would also question any wheat products.

For me personally, my diet includes lots of healthy animal and fat and very low carb.

I guess everyone has to research what diet is best for them. My opinion sugar/starches are the arch enemy to my body, causing inflamation, cholestrol and a host of other inflictions.

Susanne, I started crying as I read your post, because I don't want to know that this is permanent. I won't be able to deal with that.
Not at 30. While everyone I know is off getting married, buying houses and having kids, I am suffering and barely surviving. I truly don't want to get out of bed anymore. For what ?

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..

Things are looking grim. I'm moving into a small apartment this month also. I'm on welfare and work part time cleaning.

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.

Anyway I don't think I'll win the battle for more pain meds. I just don't. I brought my dad in with me and it didn't change anything.
I've tried or am taking every other medication for this like lyrica, elavil, cymbalta..

I'm feeling like I've had enough of fighting at this point.
October always makes me feel like this.

Please don't take anything I say too much to heart- many people on here have much more encouraging experiences than I do! And those who know me well here know that I have a talent for saying the wrong thing- I am on the autism spectrum which affects what I write. I want to be informative and I do empathize, but I am often too blunt, and we are all different in our outcomes and situations.
It sounds like you have seasonal affective disorder- if October is a trigger for you. I enjoy the fall aesthetically, but the colder weather makes me a shut in.

Could you get some kind of counseling? When life seems meaningless and too much trouble, and I have been there quite often, stepping back and reconstructing a life beginning with the things that provide enjoyment and distraction seems to help. Even the simplest things. For me it has always been needlework, even though I am not as good at it as I used to be.

I understand the frustration about smoking and eating- sometimes it seems like food is one of the few remaining pleasures in life and I am overly fond of sweets though they are not good for me. I can see how quitting smoking, which while not good for you is probably not contributing to your problem, would just be another burden at this point, and deprive you of a stress reliever.

Please try not to give into despondency. If you know that this is a bad time of year for you be especially gentle with yourself. It sounds as if a lot of other things are going on right now besides your health. Cleaning is a difficult way to make a living, and probably exacerbates your condition with all the physical stress.

Please forgive me for saying anything which upset you. I have had a good life in spite of this disease, and I have had times when I lose sight of that. Honestly, abuse and neglect in childhood has had far more negative impact on my life than CMT has. I am more of an emotional cripple than a physical one despite my walking sticks and handicap plate.

You have to keep fighting, learning, advocating for yourself. Please. Things change all the time, and some changes are for the better.

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

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

Have you had your Vit D checked?

Hi Sally - Not recently ,no

But I've been supplementing 2000IU a day for quite a while. Everyone in Canada needs to ,as soon as summer is over.

Re : smoking. My GP thinks I have enough stress right now.
I take Phytoberry by Progressive - a whole body antioxidant.
I eat better than anyone I know. I make shakes every day , eat organic whole grain cereals , white fish, lean meat once or twice a week , nuts and seeds , drink green tea and water with lemon , tons of fruit , plain yogurt with raw honey , etc. I am very active and slim as well.
To say that smoking is keeping me sick is not really accurate.
My body is so accustomed to it after 18 years. I'm under 12 a day and always have been. I have an electronic cigarette that I use often.

The problem with gluten free foods is that if you're not a celiac, these foods are actually packed with sugars and oils. It's in no way healthier than food with gluten. You're also missing the fibre from whole grains .This is In general ,of course.
I worked at a health food store for years , so I'm not just making this up.
The cost is very high as well. So if it's not an allergy issue then there is no point.

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.

lined_in_silver,
You came here for help, so I am trying to help. Do you eat any vegetables, you didn't mention any. I think these are the most important foods for healing and staying healthy. IMHO, you are in denial about the smoking. Think about what you are saying. My body is used to processing the hundreds of toxic chemical in the smoke, including formaldehyde, benzene, polonium 210 (radioactive), vinyl chloride, chromium, arsenic, lead, cadmium, carbon monoxide, hydrogen cyanide, ammonia, butane, and toluene, so it's ok. I don't know if any of these things are causing you health problems, but you can't say they are not either.
Ron

Ron is correct here and defiantly you are in denial and that's normal since your trying to cling and stay connected to your old life in some way by not giving up smoking, god knows you have given up enough already.

You are young, probably the youngest Ive seen but the upside is you would have the best chance of slowing down the progression of PN if you take it seriously but you continue to smoke so your killing your chances some what.

Hmmm... while nobody would argue that smoking is healthy or a good idea, I very much doubt it plays a big role in PN - apart from hindering B12 methylation (which can be mostly corrected with supplements) in the short term.

I think when you are just coming to terms with a pretty horrible illness, the last thing you need is people telling you you are in denial. No offense, but I don't think that's very helpful right now.

Yes, the mid to longer term plan should be to quit. Obvious. But. One of the side effects of quitting is anxiety attacks (been there...), which can be unhealthier in the short term. So one might want to take their time to take stock and see what can be changed when it comes to lifestyle.

I'm still dragging (pun not intended) my feet about quitting, not so much because it affects my PN - it doesn't - but because it's horrible and expensive.

So yes, do plan to give up, but perhaps wait until you are in a better head space. Your GP may be right for now - they sometimes are. ;)

"I very much doubt it plays a big role in PN - apart from hindering B12 methylation (which can be mostly corrected with supplements) in the short term"

Mate Im only replying to the quote above. Im not sure if your aware of the long term damage but you can google smoking and extremities or smoking and Pn and there are hundreds of threads dedicated to the ill effects but best summarised below.

"Stop Smoking: quitting smoking is particularly important because smoking constricts the blood vessels that supply nutrients to the peripheral nerves and can worsen neuropathic symptoms."

and of course lung cancer will cure your PN ;-) I speak from experiance

My mother suffered from fibromyalgia and PN terribly and was a very heavy smoker. Towards the end of her lung cancer she was sedated of course by morphine but she was very very happy her leg pain was finally gone!

The OP is under an extreme amount of stress right now. It is impossible to live in the 21st century and not know that smoking is bad for you. No one is arguing that point.
In this case support and not pressure to add something as difficult as quitting smoking might be more helpful, since mental state has a direct effect on health.
Also, smoking affects circulation which can certainly relate to PN, but it doesn't sound like a causal factor in this case.

this thread is veering off from helpful to harassment at this point. lined in silver has a full plate already and is obviously not comfortable with quitting smoking at this time. when and if she is ready she will do it. some of the posts in this thread are more about the agenda and beliefs of the posters than about what is possible for lined in silver right now.

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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Since the topic & tone is degrading I am locking this thread.

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