MrsD,

Thank you for your suggestions. Responding in order:

1. I had my second visit with my neurologist yesterday. He had previously run a very extensive battery of blood tests, and he went over the results in detail. I am normal on everything and there must have been a hundred or so factors tested. B vitamins are fine also. His best guess is that since I had borderline diabetic blood sugar levels six months ago, that is the likely culprit. I have been dieting and exercising since the first of the year and am now down more than 40 lbs. and 60 on the blood sugar count. That plus Neurontin (you folks in this support group tend to call it gabopentin, I believe that's the generic name) seem to be offering me relief. He upped my Neurontin from 3x300 mg/day to 3x600 mg/day. But I am DEFINITELY FEELING RELIEF!

2. I read your link on alcohol and PN and it, like other research I've read, seemed to focus mainly on alcoholics, not just regular social drinkers. It also mentioned the poor diet that may be associated with alcoholism, and the resulting impact on blood chemistry. Since I am getting relief as noted above, my blood work is all spot-on, and I enjoy my couple of shots of alcohol nightly, I don't plan to quit or curtail it at this time.

3. My neurologist was fairly neutral on the subject of Benfotiamine but was not opposed to trying it. It's a lot more affordable that the Neuropathy Support Formula that I initially asked you about, and doesn't have the huckster marketing that the NSF product has. I've ordered two months' worth and was pleased to see that it can be had in bulk for under $100/year. I'll hold off on the lipoic acid and Biotin for now, but might try adding them in later.

I will advise how all of the above works!

BobL

I know I sound like a pest... but you really need the actual B12 numerical result. Do not accept "normal" because in US the lab ranges are out of date and report lows as normal which the doctors then tell their patients. So therefore a level of 250 will be not flagged in US, however it is a seriously low level biologically.

You need to be at least at 400 US units. This level now appears in medical websites targeting doctors, for continuing ed.

Alcohol metabolism results in formation of by products which in some people are toxic. These are primarily aldehydes. So you don't have to be a heavy abuser (which often has poor diet associated), to have reactions. This is why the benfotiamine is useful for those drinkers. There are also congeners in it which people may react to.

http://banderasnews.com/0506/rr-congeners.htm

Also chronic alcohol use (doesn't have to be heavy) will have that diuretic effect and therefore cause losses in magnesium.
So taking a good magnesium supplement or eating foods rich in it may help. Poor magnesium levels are implicated in PN symptoms (nerve malfunction) in some people, and are very bad for health because about 300 systems use it as a cofactor. Estimates are that about 70% Americans are low in this vital mineral. Do not accept magnesium OXIDE however, as it is not absorbed, and is basically a laxative.

I am still soaking my feet in warm water with epsom salt every night. Then, I rub my feet and legs with epsom lotion after soaking.

I also rub my neck down to chest (I think that my shortness of breath maybe caused by some tight chest muscles - this is pure guess on my part). I rub my hands with epsom lotion as well.

With all the soaking and rubbing, do you think it might just be better if I take magnesium supplement? As you know, I have been taking so much supplements, I dont want to stress so much my kidney and liver, that is why I was avoiding taking another supplement, but if it is better taking it orally, i might have to reconsider.

Thank you.

BobL,

With 1800 mg/day, dont you feel any side effects like sleepiness, brain fog, memory lapses, etc?

I am on 1200mg/day and it makes me very sleepy. With this dosage, it gives me a 2-3 hours pain free on some days, but on some days, it does not effect at all.

It is good that its working for you very well.

[QUOTE=BobL;88655
That plus Neurontin (you folks in this support group tend to call it gabopentin, I believe that's the generic name) seem to be offering me relief. He upped my Neurontin from 3x300 mg/day to 3x600 mg/day. But I am DEFINITELY FEELING RELIEF!


BobL[/QUOTE]

Mrs. D,
I had listed the supplements I had been taking so you would have additional information when asking whether you had any thoughts or ideas about causes for the groin and leg pain that started a few weeks ago.

It is happening every few days. This is new and not sure what may have started this painful ache. Hard to describe; possible muscle pain? Like I mentioned previously, this is from the groin down the whole leg; especially the back of the legs; but right and left groin areas as well. It has made walking, at times very difficult and getting quite concerned. I have not added any new prescriptions or supplements.

I would really appreciate what, if any, suggestions or thoughts you may have.

Gerry

I think groin pain is possibly hip pain. If it is in the back it can be also sciatic pain or sacral arthritis. If you have a lower back issue, you will also feel pain down the backs of the thighs.

When I fell several years ago, I damaged a tendon in the thigh, called the adductor. This tendon attaches to the bottom of the pelvis. And let me tell you...when that tendon flamed up I was unable to walk, lift my leg, roll over in bed, and the only pain relief I had was aspirin! I couldn't even dress myself! Aleve didn't work. It hurt sitting, walking standing lying down...everywhere!

I still get minor aches there which I use my magnets for. And I had to do 3 months of PT for it.

Here is a link with illustrations. Hip pain is complex and can also be due to bursitis:

http://www.aafp.org/afp/2000/0401/p2109.html

Pain in the groin can also be meralgia, but that is typically down the front of the thigh only. Not in the back of the thigh.

If your pain continues, you'll have to see a doctor, for this, I think.

If you can take aspirin, try some AlkaSeltzer original formula.
If it works then it points to an inflammatory cause.
Just sitting on high stools, or "director's chairs" can put a strain on the lower back for some people. So you might not even think of that as a trigger etc. And you can herniate a disc anytime!

I have just started ramping up from 900 mg to 1800 mg so I can't comment on the higher dosage but over a month at the lower dosage did not bother me at all.

Thank you for the reply.
I hope you could post sometime in the future, if the dosage continues to work for you and the side effects, if any.

Keep well.

I would like to please remind some posters here that this is a
thread about supplements. Please try to stay on topic.

We do have a thread to discuss the MEDICATIONS used to help with PN symptoms.

This is the link to it.
http://neurotalk.psychcentral.com/thread161040.html

I am bumping it up today to page one, here, so it will be easier to find.

Mrs. D.
In November, it will be 6 years I had lumbar spine fusion/laminectomy. Also doctor said nerve was badly crushed (said he never had seen such a red angry nerve like this before).

Eventually went on narcotics for pain which caused terrible constipatation (take daily laxatives) leading to my bladder coming down (Cystocele surgery; bladder in Mesh Sling), following year, small bowel came down (Rectocele Surgery). After bladder surgery the PN pain really got even worse and developed edema as venuous stasis; feet, legs and ankles.

This groin pain, along with leg pain (do have in front as well as back of legs) just seems more prominent back of the legs and behind the knee cap area. As I mentioned this has made walking even more difficult. Since I have had pain from the waist down to the toes, this pain is something new and different from what I have been dealing with all along. I had the siatica pain before fusion and this does not feel the like that.

I will look up more info on bursitis of the groin. Do you think this would affect the legs making walking even more difficult? This is both legs and both side groin pain.

I did see Pain Specialist's assistant about a week ago and mentioned this pain. She thought it might be muscle pain. I do take vallium, along with narcotic meds. She thought I should try increasing the vallium since this is not only for anxiety; but for muscle pain as well. I already take two 5mg's vallium a day. Have added an extra half; much more makes me too groggy. The bursitis sounds like a possible.

Thanks,

Gerry