Hi Friends,

Just got out of the hospital after a 4 day stay, I was at first DX with CIDP, but now after new testing and a 4 day hospital stay Doc thinks I have idiopathic neuropathy, He started me onGabipintin (sp?) I just don't know what to think at this point. I guess my question to you all is, can this condition get better? What is my hope for the future? What questions should I be asking my Doctor, this all seems so bleak to me, is it possible to live a long life with this? My symptoms are numbness in toes numbness and burning in legs, numbness in arms and twitches all over the place. What are some of your symptoms who have been diagnosed with this ? Thanks for any help. Jan

Jan,

There's a "STICKY" right at the top of this group called Neuropathy does improve, so yes, it can get better. To what degree depends on the cause and other factors.

Yes, it is possible to live a normal lifespan with PN, but again, that depends on other factors as well.

There are also other STICKY threads and a sub-forum on PN Tips, Resources, Supplements & Other Treatments that should answer many of your other questions, including things to ask your doctor & tests to request.

My personal theory on all of this is, If it can't hurt to try it, then it can't hurt to try it. With that in mind, barring any allergies or other reactions (which are possible but unlikely if not rare), I'd get on a regimen of:

Sublingual B-12 - 5,000 mcg. 1/day (on an empty stomach)

R-Lipoic Acid - 100 mg. 1/day
Acetyl L-Carnitine - 500 mg. 2/day (once with the R-Lipoic Acid)
Pantothenic Acid - 500 mg. 2/day (once with the R-Lipoic Acid)

The sooner you start taking these, the better. Some other folks here may have some further suggestions.

After you've read the threads and other links here, and had some more testing, you'll have a better idea of what other things to add to the regimen.

Doc

I've responded to you via PM today, more completely.

But please Liftyourhands, post more details on your lifestyle.
We all have to be detectives to find what it is that triggered you into PN symptoms.

Diet can be a big factor, and some people with gluten intolerance develop malabsorption of nutrients from the intestines. When this happens you can develop deficiencies in addition to neuro symptoms. Getting tested for B12 and Vit D is a good start.
But minerals often are affected as well. Magnesium, zinc for example.

If you use OTC medications alot, like Zantac or Prilosec, you can become low in 6 nutrients: B12, folate, magnesium, iron, calcium and zinc.

PN is mostly a lifestyle problem, meaning something in your life is not working well for you. Sugar control, poor diet, gluten intolerance, other food allergies, exposure to toxins, RX drugs, vaccines, dry cleaning clothes exposure, pesticides, and many more. So looking back at your LIFE when this started, and carefully looking at your home, office, food, hobbies, can sometimes provide hints, so you can correct that.

As MrsD said, many things can be factors and it can take a while to find the trigger or cause. The more information you can provide, the better.

Did these symptoms start gradually, or suddenly? How long ago? Also, did it start at toes, and work it's way up, or start in all listed areas at once.

--can you post results of testing that was done, especially any serological tests for anitbodies?

There are a number of autoimmune neuropathies that do not necessarily involve the anti-nuclear antibodies characteristic of vascular/collagen/connective tissue autoimmune conditions (though those can cause neuropathy too), but involve antibodies to specific components of peripheral nerve, and everyone should be tested for these if cause is not obvious (and it often isn't):

http://www.neuropathy.org/site/DocSe....pdf?docID=944

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

Thank you for all your posts, I am now going to give you all the facts about myself and what test results I have, I so appreciate you taking the time to help me, I feel like I'm dying with all this pain and numbness so here is my story with this disease, in Nov. Dec. Of 2010 I was very ILL with a cough that lasted for a couple of weeks and I also had several colds that I could not shake, as soon as I got over one cold I would get another one, also around Oct. Of 2010 I received a whopping cough vaccine recommended by my Doctor because my very young grand kids live with me and I wanted to protect them so I got the vaccine. January of 2011 I noticed numbness between my second and third toes on my left foot, I did not at that time seek medical help, about 2 months later I experienced numbness tingling and burning going up into my left leg, still I did not think anything was seriously wrong, then the numbness and tingling moved over to my right foot in the big and little toes, that took about 2 months, then very quickly I would say about 6 weeks numbness and tingling moved up into right leg, both legs now have numbness and tingling from toes to mid thigh, I only have burning pain in left leg, I am a worship leader in my church and when I stand for to long my feet go numb and burning pain starts in left leg, and numbness goes up my legs, then about 6 weeks later numbness starts in both arms at same time, the numbness starts in my wrists and goes to upper arms, A few weeks later is when pain started, both legs feel tight and my calves feel painful and tight sometimes, my thumb and little fingers on both hands cramp up my upper arms feel so much pain like someone hit me really hard, I feel weak and heavy and fatigue, I went to the ER Wednesday night because I was so weak, I feel like I have the flu all of the time, I just feel very sick, they ran many tests at the hospital especially blood tests,they said they were all normal I don't have the results for those tests but I will get them for you guys and post them, they also did a glucose tolerance test, normal results, MRI, normal, they put me in the hospital for 4 days and did all kinds of tests, the first Neuro Doc I saw 1 week before going into the hospital did a spinal tap, he reported slightly elevated protein levels the glucose level in spinal fluid normal results, I fo have these results which I will post to you, glidin IGG, IGA ABS less than 3 shoes negative, Monoclonal Gammopathies serum result not deceted, SCL-70 less than 11 result negative, Sjogrens less than 11 negative, thyroid hormone 3.30 result normal, hepatitis B non reactive, hepatitis C non reactive, HIV Non reactive, ESR 7 result negative, He told me my vit B was normal but I will get that result and post it along with any other blood tests, maybe you all can see something I don't, I also want to mention I had a Nissen Fundo stomach surgery 7 years ago and suffer from dumping syndrome a lot of Diarreah over the past 7 years. My first Neuro told me from my symptoms and slightly elevated spinal protein he Dx with CIDP, and that it could be treated with IVIG I was relieved to get that DX because it could be treated, then when the partner saw me in the hospital he said he believed I had idiopathic neuropathy, I then became more worried and distressed and very depressed, it seemed like there was not much hope with this DX he prescribed me Gabapentin 300mg 3 times a day, it helps some but not much, I also have Xanax but I forgot to ask him if this could be taken with Gabapentin. I am losing strength and feel weaker everyday although still functioning, oh also I have twitching everywhere which started 2 weeks ago, just another lovely symptom. I am absolutely miserable, I was released from hospital yesterday and see my first Neuro Doc Wednesday, I will read the stickies to see what questions to ask. Now I need your help I have tried to provide you all with everything I can think of how this all started, thank you in advance for all the knowledge you all have, I appreciate you more than you can know. God Bless you. Jan

Hi MrsD

Here are new blood test results, thyroid stimulating hormone, 2.52 normal,homocystine,12.1, normal,FreeT4M0.86NG /DL,Normal,FolicAcid20.0 VitaminB12 516PG/ML, all are within normal range this round of blood tests. Thanks for any comments, I just want to feel better and I don't yet. Thanks, Jan

Well, good that the thyroid is better.

Make sure you have zinc and selenium in your diet to help convert the T4 to T3 in tissues. And keep an eye on it.

The homocysteine really should be lower. I know the ranges are up to 12, but really you should be at around 8.
I'd raise the B12, using methyl B12 orally daily on an empty stomach. Your B12 is really borderline...and with people who have neuro symptoms having a higher level is good insurance for symptoms. 1mg should be enough for you and do this every day.
Make sure you get enough folic acid either in supplements or food.

You are not home free however, with that reactive hypoglycemia. Do you have a plan for that?

Yes I do have a plan for the reactive hypo, I actually am going on a pretty strict diet that my brother who is a personal trainer is putting me on, I am hoping in time I will feel better my symptoms are so bad that sometimes I wonder if I'm going to make it through, but I lean on the Lord so I will make it.My Brother also started me on Real Water, ever hear of it? Thanks so much for all of your help, I will report in every few days to let you know how I'm doing, right now I have a terrible cold and cough, I feel like my neuropathy is worse is that possible? oh also one more thing, my brother wants me to start the protandim right away but I have put this off due to your advice, maybe I can add this later, he really believes in it, I guess it really helps the free radical issue. Thanks again, Jan

When you get your D fixed, you will find you don't gets colds and coughs so often.

Also using a quality fish oil, or the new Krill oil, will provide the essential fatty acids that line the lungs and bronchi and make them more resistant to infections.

There was a time in my professional life (exposed to all manner of communicable disease), that I would have chronic asthma and bronchitis all year long. When we started taking essential fatty acids here along with my son who had ADHD, we all benefited in ways not expected. My chronic GERD (from a hiatal hernia) went away too. So if you do not eat salmon frequently or use the Smart foods out there now (ex: Smart Balance and Omega-3 eggs) you need to take the EFAs in supplement form. I haven't had a real bronchitis, in a decade, except for one time my cat sneezed on me, and gave me some nasty bug. And neither my husband or I have had a serious case of flu in many years (we never get the flu shots either).

You can quench free radicals easily from foods if you choose. I'd stay away from herbs since you use RX medications, because herbs contain proto-drugs and may have unexpected interactions. Not all herbs have been studied carefully in this regard.

If you were NOT taking the drugs, then there would be less risk with herbs. Foods high in antioxidants are foods of "color". Berries like strawberries, blueberries, etc. You can substitute sweet potatoes/yams for white potatoes and get more fiber and the various carotenoids which help with free radicals. Squash and red/yellow/orange peppers also are very useful. Curry spice with its turmeric supplies curcumin which is a powerful antioxidant. Grapeseed extract also works very well for allergies and free radicals...and is very good at free radical scavenging. It can help people with RSD (another type of neuropathy ) as well. Grapeseed is available as a supplement for typically little cash outlay.

Do keep us in the loop and post about your progress.

When trainers enter the picture, I'd just give a simple last recommendation. Make sure you stay hydrated and drink alot of water, as you increase your protein level and take some supplements.
If you have any kidney results from testing that bear watching, discuss things with your doctor.