Getting worse
 

Hi everyone,

Just need some encouraging words, I have this neuropathy everywhere, it is now in my face, so I literally have it from head to toe, I have been trying to keep my blood glucose under control, but it's not going well, in the last 4 days I have had 2 hypoglycemia attacks, I really think this hypoglycemia problems are what is wrong with me, I have to get this under control, the Doctors do not agree with me, but they could be wrong, I have an appt. In 3 weeks at UCLA neurology I hope the can help I am losing hope fast. :( thanks for all of your help here, I have started high dose of VitB12 I also am on B1 and 100mg of r-lipoic and a multiple vitamin as well as juice plus. I also am on nortriptylene and gabapentin, mrsD or anyone else out there please any comments. Blessings, Jan

Ask your doctors for a fasting INSULIN test. This will show high if you are insulin resistant, and in extreme cases can show an insulin secreting tumor of the pancreas.

Eat small meals throughout the day. 5 if you can. Make sure some protein is in each one.

Large meals lead to more insulin secretion. Sugar and starchy carbs also spike insulin.

Also some liver testing may be helpful. The liver makes glucose for you when you are not eating...and if this is not happening, you will be low.

Lipoic acid may lower blood sugar in some people. Drop that one and see if you are better. I certainly would be investing in a glucometer and strips, and testing several times a day to see where your metabolism is going.

Stay away from juices as they spike insulin. I'd add in acetyl carnitine. This supplement helps the mitochondria when glucose is not available. Carnitine transports fatty acids to be burned for energy instead.

Can it get better?
 

Dear Friends,

I am so miserable right now with all this numbness I wonder if it can ever get better, MrsD thank you for your response above, I am doing the 5 small meals a day and am planning on purchasing the other supplement you mentioned, i have a question, if I get the hypoglycemia under control can the numbness get better or under control, I just don't know how much longer I can stand this, it seems the more I try with the supplements and diet the worse I am getting. Thanks, Jan

Yes, it is possible. But you know, I am worried, because this seems severe.

Get that fasting insulin test ASAP if you can.

I am worried too!
 

Is there some other conditions I should be looking at that could cause these symptoms, I'm not trying to diagnose myself but I am having some truly big problems here. Thanks, Jan

I think the only way to know for sure (and convince doctors) is to have a glucometer at home and test all day long.

fasting, 1.5hr after breakfast, before lunch, 1.5hr after lunch, before dinner, 1.5 hr after dinner, before bedtime, and wake up around 1am and test then if you can.

Keep a corresponding log of what you eat at those meals when you are testing.

If your A1C is low, and your INSULIN high, that would point to a specific tumor of the pancreas that secretes insulin. There is a further test they can do but usually it is done in the hospital.

Low blood sugar spells can have confusing symptoms, and the only way to know for sure is to have a blood test to confirm it with your glucometer. Do you have low blood sugar symptoms in the night? Nightmares, or night sweats?

Again low blood sugar
 

MrsD, yesterday I did as you suggested and took my blood sugar all day, arou d Lu ch time which I ate late around 3:00pm took blood sugar at around4:30pm and sure enough I was at 50 and not feeling well of course 50 is very low, I was blessed enough to get an appt. With my endocrinologist tomorrow morning and I am going to ask for a fasting insulin test, my appt is at 9:00am tomorrow so I am not going to eat past 9:00pm tonight and will ask him if he can do the test in his office tomorrow, I am again hoping this might be my problem, if there is anything else I should ask him please tell me what that would be, I am at the end of my rope with all of this so tired of feeling sick, thanks again for all of your help, oh and also how is your little kitty doing? I hope all is going well. Blessings, Jan

Very low thyroid can also lower blood sugar.

I hope your meter is not low in the battery, and your strips are
fresh too. That matters to get accurate readings.

Let us know how the appointment goes. I'll be thinking of you.

Thanks for asking about Oreo....she is on steroids now (Prednisolone) for a two week pulse and taper, and is now pretty active and frisky. The vet said she would feel better on them.
They may help her gain some weight (she needs 2 lbs to get back to how she looked in the picture in my siggie).

She is enjoying the weather outside, so at least I can watch her have these last days in a happy mode. (If I had gone thru with the invasive surgery, she would be a mess right now and in pain.) We can't expect her to live much longer, but perhaps she will at least enjoy what she has left.

I too am a diabetic.
I don't think hypoglycemia can cause nerve numbness. The recognized symptoms are:
nervousness,
sweating,
intense hunger,
trembling,
weakness,
palpitations, and
often have trouble speaking.

The trembling and palpations are the opposite of numbness. So, your doctor may be correct about that. Certainly, if treatments used for hypoglycemia aren't alleviating the numbness, you need to return to the doctors.

It can be serious. It can be a symptom of several disorders, including an impending stroke. Please return to the doctor.

Persistant and repeated low blood sugar can damage nerves...
They in a sense starve.

One serious low in a diabetic is now linked to onset of dementia in some recent studies.

http://forecast.diabetes.org/news/lo...risk-diabetics

Fasting insulin
 

Hi Mrs D they did my fasting insulin in the hospital I got those results from my Doc today they were 2.50 he said they are within normal range. They said my AIC was borderline low. Any comments appreciated. Thanks Jan

I am confused. The reference ranges in US are 6-24 typically for fasting INSULIN. Mine is 34, and we just had a poster post his at over 100!

I have never heard of a person with a borderline low A1C.
Were these tests done in the US?

Having a low or good AIC is a goal.
This is an A1C graph for example:
http://www.diabeteschart.org/bloodsugarchart.html

Those were the numbers the Doc gave me I will call him and clarify those numbers and get back to you. Jan

A1c
 

My A1C is 5.4 I will come back with fasting insulin when I get it from Doc.

Okay, 5.4 is good. People who have no insulin resistance typically are below 5.0.

5.4 means the average daily glucose you have is 108.

If you look on the chart I linked to you will see you are in the middle of the green area.
Frank diabetes is above 7. People controlling their glucose by diet typically fall in the high 5's to 7 range.

There is some leeway for age. A young person with 7 is more serious than a 65 yr old with 7.

So it would be a good idea to follow a conservative diet, get rid of sugars and juices, and minimize starchy carbs, and eat quality protein, and veggies. Having fruit with its fiber intact is ok in moderation. Berries, oranges, apples. The fiber slows the absorption of the sugars in the fruit and evens out insulin response.

There is alot of hidden sugar in many things. Ketchup (Heinz makes a low sugar one), tomato sauces, even salad dressings.
Use nuts in moderation for snacks, instead of carby snacks. One really needs to read labels. Even bread has sugar in it! (some brands are removing it so read the labels.)

Reactive hypoglycemia occurs with large meals, and sugar consumption for the most part. People with a rare tumor of the pancreas will also have low blood sugars.

Thanks MrsD you have been of great help to me. I saw my Neuro Doc again today, when he walked into the room and said how are you I very calmly said I am numb from had to toe, but I'm still walking so I am grateful, he and I had a very nice talk about all of this I told him, you must find an answer to all of this, he said I am doing my best and I will not give up, that is so nice to hear. He will be doing a nerve biopsy on me Oct 26th so I can use your prayers for that, he is checking for small fiber neuropathy, but I am a bit confused, if I have a small fiber neuropathy he told me he could treat it with IVIG, I thought there was no treatment for small fiber neuropathy. He has always seemed to think I needed IVIG treatment but is taking this plan of action very slowly. Can anyone tell me anything about small fiber neuropathy, even online information is confusing some say it cannot get better and some say it can reverse, what's the real story? Thanks, Jan

Sorry I need to correct one thing in my last post, the neuro Doc will be doing a skin biopsy not nerve, but I would appreciate comments on prior post. Thanks, Jan

The skin biopsy is possibly valuable. We have many posts about it on PN. You can search that term and find many many posts.

The IVIG is only useful for people who have autoimmune issues.
Elevated autoimmune markers in the blood.

Keep him on his toes.... that seems to be working so far! ;)

Skin Biopsy
 

Hi Jan,
I have had the skin biopsy. it is not really painful so don't be worried. It was positive for small nerve neuropathy. I have been tested for many things to try to find the cause of the neuropathy. Have never been able to find it.They say idiopathic & auto immune related. The doctor said possibly a virus or bacterial infection.
My rheumo is sending me back to neurologist to see if he agrees with IVIG treatments for me. I know he will agree. The neurologist tried to get them for me about a year ago but the insurance company said no. If he agrees I don't think I can have them done till the spring. I have to have a surgery done in the winter first (unrelated). I have read a lot of good things about IVIG.
I was at a conference today that said it will only work if the neuropathy is immune related.
I have asked many different doctors if neuropathy will get worse or can be cured. So far I have gotten that they are unsure how much it can progress. It is different for everyone. I have been told it can not be cured by every doctor. That you can not regenerate nerves. People on this site seem to disagree with this, so that is good. I also heard that there is research being done at hopkins for nerve regeneration. Gives me hope!! Keep praying! Good luck with everything. Hopeful:hug:

Hi Hopeful,

Thank you so much for your response, I know my Doctor said that if skin biopsy is positive he wants me to have IVIG, I still don't understand that though, does a positive skin biopsy mean my body wide numbness is caused by an autoimmune disorder even though all blood tests say I don't have an autoimmune disease? I'm so confused by all of this, I am just in so much distress over my numbness because it has spread so fast, in a matter of a few months. Thank you for any comments on this, and know I will be praying for all of us here, God is so good in all of this. Thanks, Jan:hug:

If the attack on the nerves is from antibodies we still don't have tests for, yes, it may be helpful.

They will try it, and if it doesn't work, then you are no further behind.

Certain antibodies produced from bacteria and viruses (and perhaps vaccines), may not show up in standard autoimmune testing. Some autoimmune antibodies come and go and give confusing test results.

If your insurance pays for it, I'd give the IVIG a try. The medical community uses it much more often today, than in the past for many autoimmune inflammatory issues.

Autoimmune diseases may test sero-negative. Patients on myasthenia gravis forum here have tested sero-negative, and several posters here with Sjogren's syndrome have sero-negative results.

Mine spread in a matter of a few months also. I understand your distress. My blood work all comes back negative also but I have still been told that it is autoimmune. I am still searching for an answer for the neuroopathy but if I don't find it, I now ealize it doesn't matter.
What I am focusing on now is how I can get a better quality of life. That is not to say I will stop looking. I live in hope that if they find the cause they can stop it. hopeful:)