Really need help! dx now idiopathic neuropathy
 

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.

And--
 

--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

Symptoms and results
 

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

Other symptoms
 

I also forgot to mention as a result of Nissn Fundo (stomach surgery) I have a condition known as Reactive hypoglycemia, I saw an endocrinologist in the hospital and he does not believe PN I s caused by the reactive hypoglycemia. Any thoughts on all of this mess appreciated. Thanks everyone. Blessings, Jan

Thanks for that history.

This is what I see:

1) according to the NEW scale for thyroid disease, which goes from 0-3.0...you are hypo. The old scale went from 0-5.0 and is still used, but many doctors are switching to the new one.
SO... you are in limbo with that. The older doctors will not treat, but a newer one will. My PN started with borderline hypothyroid and I resolved almost 100% with treatment. This will be a battle for you to get done.

2) Vaccine injury is real thing, but most doctors don't believe it. Vaccines stimulate immune response because of the added adjuvants in them which provoke cytokines, which are inflammatory molecules that circulate in our bodies. Sometimes this goes nuts and these then attack our tissues instead. Did you feel ill right after that shot? Fever, or aches etc? Chronic colds and upper respiratory infections, suggest you are low in Vit D. This should get tested. Fixing it will improve your resistance to infection.
I am not finding specific references to Pertussis vaccine, but other vaccines have caused what is referred to as "post vaccine neuropathy"
and it can also occur with the common flu vaccine.


3) Were you given antibiotics for your colds and cough? Levaquin, Avelox or Cipro? These drugs cause PN in some people..and treatments for it are lacking. I have a post in the subforum about this. So did you receive either of these drugs?
Do you take a statin for cholesterol?

At this point, you can try to use a magnesium supplement either oral or topical and see if the twitches improve. Low blood sugars during the day, can cause many symptoms. It would be a good idea to get that glucose tolerance test results to see if you have reactive hypoglycemia. Sometimes doctors ignore this, and only look for HIGH signals. The lows are important too.
Low blood sugar spells cause numbness, tingling, muscle twitches and anxiety...all the things you have.

These days after being online for over a decade, what I see are people who are told "normal" but who in fact are not. Their doctors don't interpret the test results completely. It happens with B12 results, Vit D and glucose results.

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html
It is estimated that about 70% of Americans do not eat foods providing this mineral and hence are low. Target 1/2 the RDA from that post as a starting point. Choose a good product and NOT the oxide form which is in many supplements.
You can choose to use the lotion, and that may help faster with your muscle twitches. CVS Epsom lotion at CVS pharmacies.

So when you get your test results, post them here.
Did they do a Vit D test on you? Very low D also causes problems...so if that was not done, please get it tested ASAP.
Come back here with the results, and do not use the RX the doctor may give you--it doesn't work well. You will need D3 which is only over the counter and is the active form for humans. The RX is D2 and from plants, and NOT active.

Medicine today is very complex, and unfortunately with all the details doctors are quite lost at times.

You may be able to find a neurologist who is informed, but they are few and far between. Johns Hopkins has a center and so does the hospital Glenn goes to in NYC. There may be other good ones, but they are hard to find!

This sounds--
 

--like a sub-acute autoimmune molecular mimicry reaction from the description provided (not all that different from the one that presumably caused my acute-onset body-wide burning neuropathy in 2003--just a little bit slower in onset).

Many times a prodrome infection or vaccination can cause an autoimmune cascade that attacks nerve (and other tissues). Molecular mimicry is a leading hypothesis into the etiology of autoimmunity--the body mounts an immune response to a pathogen that has a molecular shape similar to that of some bodily tissue, and the now activated immune system attacks whatever has that molecular shape, including the body tissue, and has great difficulty in shutting off.

As I mentioned earlier in the thread, much more extensive testing--likely available primarily at a major neuropathy center (Johns Hopkins, Cornell Weill, Jack Miller, Massachusetts General, Jacksonville Shands) may be called for here.

Just curious - would this make a difference in treatment/prognosis?

Doc