New member -- CIDP/SNF
 

hello !

mrsd,

I can now finally post on the forums -- Thank you!

My B12 results are as follows:
8/2/12 value 707
Folate 17.2 (high)
8/24/12 value 589
Folate 18.2 (high)

I am aware that both Cymbalta and Zoloft used together increases the risk of Seretonin Syndrome. I was concerned about this, but both my psychiatrist and pain mgmt doctor are not concerned about this because they claim they have several patients taking both w/ no problems and I'm only on 75mg of Zoloft which they say is a low dose. Psychiatrist didn't want to take away the Zoloft just yeat because two weeks before the PN started in JUly I had a breakthrough panic attack. We tried changing meds, but none were working so I started back on Zoloft. I plan on tappering off Cymbalta since I'm not even sure if it is working for the PN pain. I guess the only way to tell would beor to stop taking it and see. I would be willing to try something else that would not interfere w/ the Zoloft ... not sure what that would be since I cannot tolerate Gabepentin and Lyrica.

I have not received any vaccines recently. The last thing was a tetnus shot in 2006. I wasn't ill at the time this all started either. (i do remember having post nasal drip and runny nose after for a few days, but doubt that applies)
At the time this started I was working in an office ... I only worked there for 3 months. I recently moved back to NJ from NC last February.

I don't eat healthy -- never have.
On 9/6/12 my Hemoglobin A1C value was 5.3.
I'm not sure if I was tested for peripheral artery disease....what specialist would test for this and what would the test be? I am an ex smoker. I smoked for about 15yrs a pack a day. I recently quit in September. (i have had a few this past month tho due to stress :(
Lastly... the. PN is in my both feet and lower legs. my upper leg muscles always feel sore and I also have tingling in my face and some days feels like pressure. I'm not experiencing muscle spasms, but I do have muscle twitching all over which is very annoying.

If anyone can give me any advice or info it would be greatly appreciated !!! :)

Thanks again mrsd !!





/ Small nerve fiber/cidp

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**

here is my original 1st post CIDP/PN
 

I am a new member and have been navigating through for a few days and I am glad joined. It's good to know that I am not alone and there are compassionate knowledable people out there willing to give advice.

In late July beginning of August I started expereiencing tingling on the bottom of my feet while falling asleep then my feet started to get either cold or burning hot. It started to travel up my legs. I saw my first neurologist in the middle of August he performed an EMG which was abnormal. He sent me for extensive bloodwork to test for HIV/Lyme/Vitamin B...and a whole bunch of neuro things ...all came back negative/normal. He then wanted me to see a specialist in NYC. I live in NJ, but decided to seek another neurologist here in NJ. That doctor also performed an EMG which was abnormal she also sent me for bloodwork and also suggested I have ATHENA come to my house to draw blood to test for certain cancers and neuro diseases and of course all tests came back negative. After that I had MRI's done on my brain, cervical, spine and a spinal tap was performed....all normal/negative. From there my second neuro referred me to a neuromuscular specialist. At my first appt after reviewing my chart and tests he diagnosed me with CIDP, but said what was strange is that I never lost strength and on his exam said I was very strong. Another abnormal thing was that I have hyper-reflexes and he stated that people w/ CIDP usually have decreased reflexes or none at all.

The neuromuscular specialist suggested I start IVIG. I have been receiving treatments weekly since the middle of October. I'm not sure why he ordered that I receive every week....from what I've read is that IVIG is usually given first as a loading dose for 4-5 days then every 3 weeks or 2 months. (my short term disability has ended so I am now without a job because I was unable to return back to work because of pain. I am waiting for COBRA to kick in so it has been 2 wks since I've had IVIG)

In November I decided on my own to see a Rheumatologist. She did the trigger point test for Fibro, but I only had a few of the trigger points. She sent me for bloodwork to test for things that I wasn't tested for all normal except for Vit D defficiency. My Vit D value was a 13.

In December the specialist1 wanted to perform another EMG to see if there was any change. There was improvement...on my previous 2 EMG's they were unable to get a response on one specific nerve, but he was able to get a value. He stated that this can be the IVIG working or it could have been the difference in techniques on how my 2 previous EMG's were performed.
I had skin biopsy done on December 24th for
small nerve fiber damage. When the doctor called me with the results he said that it came back abnormal but the values that came back werent that bad. He wants me continue on the IVIG but now every 2 wks and said that hopefully in 5 mos or so I will start to feel better.

It's so fusrating not knowing how this happened and not having a diagnosis. the words " IF you do have CIDP it's a mild case" -- i would like to know if I def have it.

I have tried both Gabapentin and Lyrica, but was unable to get past the starting doses of both due to side effects. My neuro says he doesnt understand why I'm in so much pain and told me that I had to see a Pain Mgmt doctor. The pain Mgmt doctor started me on Cymbalta 30 mg to start for about 2 wks I am now on 60mg for about 3 wks now. I'm not sure if it's even working. The pain specialist also gave me a script for a cream to try on my feet ... it is a mix of Elavil and Ketamine, but it does not help.

Sorry for the long story

I was wondering if you can give me any info or advice on if there are any vitamins/supplements that may help with inflammation and poss help with the repair of nerves . Is there anything I can do to help with fatigue? At this point I am willing to try anything that could possibly help with relieving this pain so I am not depressed every minute of the day !!

my current meds are:
Zoloft (been on for many years)
60 mg Cymbalta
Hydrocodone (when needed/hardly does anything)
Xanax (take a few nights a week to try to fall alseep

Thank you so much and hope to hear from you soon

Nice to see you found your activation email.

Your B12 is going down. What that means is that you may be living on your stored B12 that the liver saves for us. Up to 5yrs worth, when diet is good, maybe less for other people.

I would suggest now that you start methylcobalamin 5mg a day on an empty stomach for 3 months. See if things improve some.
This is the B12 thread:
http://neurotalk.psychcentral.com/thread85103.html
this thread explains all the details.
400 is the new cut off for normal and you are quickly approaching
that low. We here typically keep our B12 at 1000 or higher.

Your A1C is not too bad. It is better than mine!
But do try to avoid sugar and white carbs...these tend to flare PN pain for some reason (if not actually cause it). This is called impaired glucose tolerance.

Do you take any blood pressure medications? Any ACE inhibitors? Any statins? Any antibiotics in the past?

Also you might want to add magnesium to your life. Since most Americans are low in this. 200mg a day of a good chelate (not oxide which doesn't get absorbed). Soaking in a tub with epsom salts really helps, as the magnesium in them get absorbed into your skin and it helps with feet and legs.

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html
Some of us use a lotion... I find this easier on my sensitive GI tract, but oral will work if you use a good type.

Magnesium really helps the mitochondria in nerve cells function better.

There are other things, to do...but starting slowly will show if you get benefits from the most common supplements for PN.
If you add them all at once, you can't see which is doing what.

mrsd -- I am not taking any of the meds youre asking about. I have been on antiobiotics in the past for colds and things like that, but not anytime around the time this all started for me. Do you think I should request being tested for
peripheral artery disease?(i'm not sure if this disease fits my symptoms...I have not looked into it yet)

I will be going out today and purchasing magnesium and methylcobalamin supplements. Am I able to use a magnesium oil while taking the supplement?I have read on numerous sites that R-ALA may help repair nerves. Is it possible for this to work for non diabetes PN for people like myself? I had purchased this, but have not started taking...wasn't sure if I had to take something else along w/ it for it to work and also wanted to get some insight on the R-ALA before trying.

Is anyone familiar with the comapny WSN Nerve Repair Formula...Vitamin B supplement that is sold on the internet to help PN? If so what are your thoughts??

:)

You are not likely to find methylcobalamin in local stores.

It is best to get online. It is not expensive, and many good online stores have it. Puritan's, iherb.com, Swanson's, Amazon.

You will pay more for the WSN formula. But that is your choice.
It is methyl B12 and benfotiamine. But you don't show a high A1C yet so saving the benfotiamine til later is going to save you some money.

This is the one I use:
http://www.puritan.com/vitamin-b-12-...000-mcg-032860
Works out to about $6.50 a month. Just over 30 cents a day.
I trialed this 2 yrs ago and tested out at 1999 after 3 months. So I know it works like a charm. Empty stomach. I just chew it up and take with water first thing in the morning.

You need to get a quality magnesium. WalMart has SlowMag and that is delayed release and easier on the intestines...no laxative effects. Two of these a day in divided doses, will be a good place to start. Some WalMarts, and Costcos, have Mag64, generic for this, at a slightly lower price. But the brand name SlowMag has come down in price too.
http://www.walmart.com/search/search...onstraint=5431

Magnesium is really important, and many people (up to 70% in US) are low. 2 SlowMag a day is about 1/2 the RDA for adults.
And it is very well absorbed too for a magnesium product.
It was originally made for doctors to prescribe and was professionally detailed for many years. It has always been OTC, but back then it was close to $20. Now WalMart has a good price for it. Epsom salt soaks really work too, so get a big container of that too.

You can move on to Benfotiamine later. (about $15 for a 2-3 mon supply on Amazon.)

WSN = $42 bucks for theirs... and they don't tell you to take on an empty stomach either.
http://www.amazon.com/gp/customer-me...pdp_images_dav
Way to much money for the same thing! I don't only search and find the best thing for our posters, I also find the best affordable ones with quality. This is because you end up needed perhaps several things and then it can become pricey. You cannot adjust your doses with fancy mixtures either and I think that is a big downside with them.

when you say to get "200mg a day of a good chelate" should I be purchasing magnesium citrate or chelated magnesium? I have a few good coupons/points to use at the Vitamin Shoppe. The also sell the form of vitamin B12 I need.
I know this depends on the person, but does 200 mg a day of magnesium enough to have a laxative effect?
Thanks !!!!!

SlowMag is magnesium chloride. This is an inorganic salt. Hence it weighs less than a chelate.

Chelates are composed of magnesium and an organic carrier.

Some are heavier than others. Not all magnesiums are absorbed equally. So they don't compare in a linear fashion.

My magnesium thread has a link to NIH that explains this.
Elemental is not typically put on all labels equally either.
So you have a mixture of failure possible.
1) bioavailability--meaning absorption %
2) actual product weight

Magnesium oxide is common historically. But we know now it is not absorbed. So being 40% magnesium by weight is rather meaningless.

Chelates are citrate, malate, taurate, gluconate, lactate typically.
1000mg of magnesium malate has 150mg of elemental magnesium the rest is the malate portion.

Many people try magnesium supplements and they fail, because of this detailed chemical situation.

SlowMag is easy for beginners. And available commonly in some stores.

Hello & Welcome!!
 

nicolek12,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Hello Nicolek!
 

Welcome to NT! :hug:

You've certainly come to a great place for support and understanding!
You'll find the folks here to be very helpful and friendly.

Make yourself right at home!

It's great to have you with us.

Rae
:grouphug: