My name is Billy, and after nearly eight months of being misdiagnosed, I just recently learned I have neuropathy! I've read many people's stories here, and I know their stories helped me, and hope mine will help one of you! Please forgive my spelling and my obsession with using the explanation mark!

My story starts in September of 2012 when I got an abscess or boil on my buttocks cheek! I really don't know if this is related to my neuropathy or not, but I think it's worth mentioning! The abscess got about the size of a golf ball, so my dr put me on an salve to try and get it to pop, or go away... In just a few days of being on the salve I became unable to hardly walk without being in excruciating pain, I had chills and I believe I was going into shock!

I got my wife to take me to the local urgent care right away, where the doctor half *** lanced it... (No pun intended) he cut a small slit, and pushed out quite a bit of infection, I was sent home with an antibiotic! From my (half assed) lancing comment... You might have guessed that it didn't work, in less than a week the abscess got bigger, much bigger, but now I know the infection is bad, because I became unable to even pee or urinate!

Don't laugh, but I had my wife drive me to the "emergency room" where I had to ride in the back seat laying on my stomach! Finally the ER lanced it and got the core! I was put on an IV for a bit and again I'm sent home with a stronger antibiotic! The infection drained for like three weeks, and I was on several pain pills... Worst month of my entire life... Or so I thought!

I only bring up the above part of the story because I remember the dr/nurse mentioned that he was scared to lance the abscess because it was located near a main nerve! I barely remember him saying that over me yelling... CUT IT! CUT IT NOW!

Shortly after the above ordeal, I started getting tingling in my left foot! Mostly after a full day of work or after walking a bunch, then shortly after that if I had to walk more than a hundred feet at a time, my hips would hurt, and I'd have to stop and rest a few seconds! This went on for about four months... Even tho I was worried, I didn't go to the dr!

Then one night I was walking up a steep hill and I pulled something in my calf... OUCH! The very next morning the bottom of my foot was completely numb, and I was getting what can only be described as pin pricks in the side of my foot, and shin... Same spots every time! Some nights I'd get some relief and I wouldn't get the pin pricks... But the bottom of my foot stayed numb as if I was walking on a dead stump!

After weeks of waiting for this to go away... I went to see my DR! (I had already been on google researching this, and learned a tad bit about neuropathy... Enough where I was going to ask her if this is what I had!) so before I could even discuss if I had neuropathy, she insisted I did not have neuropathy... She was absolutely sure I had a pinched nerve at L4 and L5! I was put on a steroid pack and again... Sent home!

Weeks and weeks went by, and it wasn't getting better! I was now at the point where I couldn't sleep, and was in unbearable pain if one foot even touched the other foot! If I was to drive, or sit... Under my leg would hurt like maybe a main nerve or something? Made me think about my abscess... You know? That nerve the dr was scared he might cut?

Still believing I had a pinched nerve... A friend mentioned to me that I should go see a chiropractor, So I did! 6 weeks of nothing! I was told by the chiropractor that I had a pinched nerve, and planters fascitous, and I needed an arch support, and I had acheles tendon... Blah blah blah! Waste of money and time!

I did more research, and the more I read... The more I was sure it was neuropathy! I called a local orthopedic and scheduled an appointment for a EMG (electromyogram) test! Six months have past, I've been a human volleyball for six months... My EMG showed I had neuropathy in my left foot and a tad bit in my right toes!

So after I get the results... I go back to my dr! She now believes me, puts me on gabapentin, well... She gave me a prescription for lyrica first, but I couldn't afford it, so I'm on 600 mg of gabapentin three times a day and 500 mg of metforman twice a day for starters until I went to get my blood work done!

I take those meds thinking they'd help get me feeling better before I go get my blood work done... And it did, a little, maybe! About a month passed with little relief... So I go get the blood work done!

Last Monday I get my results... My A1C was a 9.8, my colestoral was high, my protein in my urine was off the charts, vitamin D was low, blood pressure was ok... But basically falling apart! She increased my metforman to 1000 mg twice a day, she put me on cholesterol meds that I only took for two days (after reading about it here on the forum) she put me on a pill for my protein called Lisinopril... And I asked her to put me on Victoza!

First thing I did was cut the fat, and sugars, and just started eating better! I've been a food nazi since! Anyway... The first two days I thought something was wrong... I was hurting worse than I had in months! I stopped the colestoral meds, and started taking 2000 mg of Vitamin D, 5mg of Vitamin B12, and 400mg of CoQ10 after reading the forums! The past two days have been really good... I actually feel a cool sensation in my feet and lower leg, and I can feel hot water, the cold floor, I rubbed lotion on my foot, and I swear I can feel my hands! I even felt itching on the bottom of my foot! Yesterday was the best day I've had in 8 months! I'm praying to God that I'm on to something!

Hi. Welcome

What an inspiration you are. I learn more and more every time I read the posts here.

My husband has had idiopathic neuropathy for over 20 years. They never found out why. I bet if he had the money Donald Trump has, they would have found out the reason a long time ago.

So we do the hot/cold therapy. A basin of hot water and a basin of ice water. One minute (both feet) in each basin (starting and ending with the ice water).

He was doing this for 5 days and felt WONDERFUL. His exact words were: "I have never felt this good". Then his foot ulcer came back last week because they gave him the wrong orthotics. So they debrided his foot ulcer and no hot/cold therapy until he comes back from his podiatrist tomorrow. If the podiatrist says "the ulcer is healing, it's superficial", you better believe that tomorrow when he comes home he'll have his feet in the ice water and then the hot water. That's how good it makes him feel.

You take care. Thanks for sharing

Melody

Hi Billy,

Any one that has ever had an abcess knows the pain and agony that you went through with it. You did not mention if they ever packed it after doing the incision and drainage which is the usual procedure, leaving a wick for continued drainage. If they simply make an incision and squeeze out some of the pus, the small incision closes back up before it fully drains.

About your request for Victoza ....... they usually try Metfomin, diet, and exercise, before they resort to injectables. If your numbers are not improving with Metformin, diet and exercise, additional oral meds are usually given. If insurance is involved, there are usually guidelines before they will allow injectables. If cost of medications is an issue, Metformin is much cheaper than Victoza.

Even with bad press and bad side effects from statins for your colesterol levels, there are times when the benefits outweigh the side effects. You did not state your levels of HDL, LDL, or triglycerides, or if you have any other medical conditions that might warrant being on statins. Many times, diet and exercise will be adequate to lower your lipid levels.

You mentioned blood work but only mentioned a few specifics. Was your B12 level included in your blood work?

Pinched nerve at L4 and L5 ??? from an MRI report? or just a "guess" by the chiropractor.

You mentioned that your blood pressure was OK. Any reason for the Lisinopril ? Linsinopril is an ACE inhibitor used to control blood pressure primarily. It can be used for other reasons. ibersartan (a blood pressure med) is sometimes used to help protect the kidneys in diabetics.

It sounds as if you might be suffering from diabetic neuropathy with your feet. It also sounds as if you did not have an idea that you were diabetic until now. When was your prior blood work? Many people have diabetes for years before they are diagnosed and only find out when damage has already begun. Is this your situation? Could you have been diabetic for a long time before knowing?

I am so glad that you are finding ways to reduce your pain. Please keep us posted on your progress and your condition. Wishing you the best.

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.

Sad to hear about what you are going through. Nice to hear you are starting a a better feeling. Keep up the good works.

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

Darlene

Melody
I also apply heat and cold! I'll take a nice hot bath or shower, then get dry, rub on some diabetic aid lotion, put some dry socks on! Then I have the sleeve that was originally a knee brace, slide it over my foot, and insert an ice pack! Really helps!

Hopeless
I'm very sorry... You're right! I left out a bunch of pieces to my story.

Yes! Both the urgent care, and emergency room packed the lanced abscess! I believe the first one fell out, and the second one i took out after a week!

I requested to be put on Victoza because of what I read about how it can lower your A1c pretty fast, and curb your appetite! I've been on it for a week, and it does help curb the appetite! I am also on 1000 mg of metformin twice a day! I do not want to stay on the victoza, my dr gave me three months worth, that's when I go back for my next blood work!

My HDL was: 36 (she told me this needs to be higher)
My LDL was: 266
The Dr prescribed me 20 Mg of Lipitor! I was reading here on the forum that the Lipitor could cause my neuropathy to get worse, and possibly not even help me at all with my cholesterol! So I'm really trying to cut out fatty meats and keep an eye on high cholesterol foods!

My B12 level was not included on my chart as I can see, unless it's called something else other than B12! But I did read that neuropathy is most times cause from a B12 deficiency, and metformin depletes your B12... So it was suggested to take 5mg of B12 each day!

The pinched nerve was a guess from my dr, because I was only having neuropathy in one foot, she thought that because of this... It was a pinched nerve! The chiropractor did take X-rays, and believed it was a pinched nerve as well, but I now believe he just wanted me to make those weekly visits where he cracks my back and charged me money!

The Linsinopril is to help protect my kidneys is what the dr said... My blood pressure was fine... Not sure what my reading was!

15 years ago I found out I was diabetic, with an A1C of 11.4... I was able to get that down to a 6 for a significant amount of time! I guess I thought I was healed and quit taking the glucophage! So here I am 15 years later... With diabetes, high cholesterol, neuropathy!

I'm working very hard to get my A1C down, cut the sugars and fatty meats, drink more water, exercise more, and get the right vitamins! Any advise is welcome!

Hi Billy,

Thanks for the expansion on your history. That helps and sheds a different light on your situation and my prior comments. Makes complete sense that you would be on Lisinopril.

I was first put on blood pressure meds MANY years ago for elevated BP. When it was no longer giving me good pressure control, they added another one instead of "changing" the one I was on and I am glad because it has helped protect my kidneys when I was diagnosed many many years later with diabetes. (I also have cardiac issues.)

About the cholesterol........ I think I have taken just about every name brand and generic med on the market for at least short periods of time with NO benefit. My cholesterol levels can not be lowered by diet as it is hereditary. Everyone in my family has been plagued with high cholesterol. In the past, I have been chastized by docs for taking myself off of the statins. They made me sick. Then, a different doc asked me if I was willing to try Crestor. I agreed to at least try it but made no promises I would continue. The very first blood test results were Phenomenal. HUGE drop. My levels were great, not just better. I really like the results from the Crestor. I do have ONE concern with it. I have foot and leg cramps on occasion that are sometimes severe that MAY be attributal to the Crestor. I am not sure and I can't say it is a result of the Crestor. I have a lot of other meds and conditions that are just as likely the cause of the leg cramps. The ONLY cholesterol med I am willing to take is Crestor. If I go off of it, I will NOT be taking anything in its place. If I did not have cardiac problems, I would not be taking a cholesterol med just because of my "numbers". But that is just me. I am in no way suggesting that YOU take or not take any particular med. I think people with cardiac conditions should consider cholesterol control more than someone that does not.

I have not had any ill effects on my neuropapthy from the Crestor. I have been taking it for well over a year and my neuropathy is unchanged.

I am on several meds for my diabetes and stuggle to keep my A1C below 7.0 I am very strict with my diet. I will indulge in a teaspoon of a starch twice a year. I eat what I want on my birthday every year. I don't go overboard, don't have dessert, or anything BAD, I just don't worry about eating a dinner roll, or having a glass of milk, or eating something that has bread crumbs on or in it on that day. My belief is if ONE day per year of eating like a "normal" person is going to kill me, then so be it as life is not worth living at that point anyway. Again, I do not go overboard, just a normal person meal.

Let me know how Victoza works for you. I keep seeing it advertised on the television and wonder if my next step should be that or insulin. I guess my endo will advise. I could use the weight loss that one might experience with the Victoza. I gained 9 pounds in short order when I was temporarily on insulin due to steroid injections for my nerve pain. Part of that gain was due to edema from another drug I take, from my heart condition, and maybe the steroid, so the insulin was not to blame entirely. I think it may have been a slight part of the sudden gain.

I have a condition that I do not care to share with the entire community that may be of interest to you so I will send you a private message. See you there.

Hopeless
I did see your private message, I guess you're correct... Maybe in a few more post, I'll have access! lol

I hate that you have hereditary issues with cholesterol! This is my first time dealing with this health issue! I really hope I can control with diet, but if I go back in three months and diet hasn't helped... I'm gonna ask about the Crestor!

Your diet sounds so extreme to me! I'm not use to this life style at all! I'll tell you a secret... So I've been on my eating healthy change thing for two weeks now! Last night I had the biggest craving for a dbl quarter pounder from mcdonalds! My wife fussed at me and said she wasn't going to pick that up because I've been doing so good! I told her... If you don't get me one, is get in my car and go get one myself! After going back and forth for a while, she knew I was gonna go get one if she didn't pick it up! So, she brought me one home! I was so excited, the burger didn't meet my expectations, but it was still pretty good... 20 min later, I got sick feeling and had to run to the bathroom and I lost it (if you know what I mean?) I got right back on track today and I feel fine... But I know I'll never be able to do the once a year free day... I'm gonna need a few more free days than that! lol

My neuropathy is my number one focus, I've read, and studied this quite a bit... Most stories I read, people are unable to get better, but some stories I read... People are able to make big changes, or even heal the damaged nerves! I pray every night to God to guide me in making the right choices, and help me heal this! I just want to be a useful member of the bipedal community again!

Hi Billy,

I don't blame you in the least for wanting that burger. Sorry you lost it. Your wife seems to be in your corner but also knows the torment you feel being deprived. Maybe with the Victoza you will be able to eat without cutting out too many of your likes. If you can get "control" and still eat sensibly, that would be great. You could indulge in some of your cravings if the Victoza keeps you in decent ranges. If my levels were better, I would have more "normal" eating days than just my birthday and one holiday. I really missed a lot of foods at first but they just don't seem to be that important any more. I still have a few foods that I really miss but not too many.

Hope you can get your neuropathy pain levels down. Good luck to you.