? On Sfn & Pre-Diabetes?

[comfortzone]

I need help looking at the big picture from your perspective :-) Per my usual - my extensive tests in my dysautonomia - don't make a whole lot of sense to me or anyone else for that matter. There are too many to go into - so I'll start with just one...

Okay if anyone here has small fiber neuropathy -- did you get diagnosed when you already had a diagnosis of diabetes or pre-diabetes? Or did you have feet symptoms that prompted the testing? Did anyone follow up with blood glucose monitoring?

My situation is one of I have the symptoms of worsening small fiber neuropathy .... & testing confirmed this. But as to why? Well my hemoglobin a1c has been about 6 for I'm guessing 4 years. Since it never changed - even with a trial with Metformin a few years back - we stopped that medication. All medications come with a price - so doc said stop taking it.

Then very recently - I get a fasting blood glucose of about 118. This is the range it's been in for about 4-5 years. The unusual part was in that I had a 2 hour glucose tolerance test - with odd results. It showed me at like 118 fasting and 119 after 2 hours post drinking the test solution.

So that shows that my insulin levels are handling things well? Or no? I had believed that if the 2 hour was over 140 you have diabetes or issues that way. Yet whatever I have it's enough to give me significant pains in bilat feet and up into the ankles over the last year or so.

I've lost 35 pounds in the last 4 mos. - but that's just a third of what I need to lose -- so I'll keep that up.

But might there be some kind of odd metabolic issue -- that can also cause weird labile HTN, muscle join pains, knee buckling, and a some other things?

Is there any testing that you are aware of that you've had done that ilicited some more concrete results that pointed do a concrete diagnosis that in turn gave you a plan for better health?

I'm stumped....I somehow think I stump everyone - even the great docs -- and they all feel so bad they can't help me..... This is quite a bit of stress - just dealing with being the odd man out with no specific helps!

Thanks you guys!

To date I've seen rheumie, neuro, phys.med&rehab, nephrology, sleep pulmonogy, all at Mayo.... I get 'yes your hip muscles are weak, no we don't know why. yes you have sfn - but we're not positive what's causing it - maybe your sugars, yes your knee buckles - thank goodness you've built up your muscles so you won't likely fall - but we don't know why, yes your emg shows chronic s1 radiculopathy but 2 mri's of the spine area ilicit no major problems, you have mild sleep apnea with severe desats to the low 70's, your blood sugar testing is confusing, yes your blood pressure is very labile but we don't know why or really what to tell you to do about it aside from rearranging your current meds a bit, your arms hurt because your legs are weak and you push yourself out of furniture - please don't do that ok? HUH? the next guy 'your legs are strong'....yet I can't get out of chairs and such without upper body work and handicap concessions in the home....

I'm trying to keep positive but today ... I'm feeling sad.

[nmorgen]

Hi nowwhat!,

I wish I had some answers or advice for you, unfortunately I don't, but I do hope that you start to feel better and find someone or something that helps. I wish I actually knew my glucose levels. I have been tested numerous times and always been told that it was normal. This last time my cardiologist did a 24 hour fast test and tested my insulin levels as well as glucose and told me that I have insulin resistance. Exercise and diet change are the only things I was told to do.

I also have sfn in my feet. they have no idea why, but I think it might be from blood pooling when I stand. I do notice that sometimes my feet will turn red. I also noticed last year when I got dehydrated that I lost blood flow to my toes. They turned completely white and numb. That was after my QSART test, so I'm assuming my neuropathy probably got worse. I don't have pain or burning all of the time, so I'm thanful for that. I do use nicotine, which promotes blood vessel growth and it has helped my feet, but it might have helped me on my way to IR, who knows.

Oh, I also use my arms to help me get out of a chair. My shoulders kill me at night after getting up and down taking care of 2 boys. I'm really considering doing muscle strengthening exercises for my legs. My cardiologist doesn't want me to, but I think it's something I really need to start.

Anyway, I hope you feel better soon.

[Noreen]

But might there be some kind of odd metabolic issue -- that can also cause weird labile HTN, muscle join pains, knee buckling, and a some other things?

Hey if you find out what it is, please let me know. the docs were convinced i had SFN but the skin biopsy came back negative. Glucose tolerance fine. Heavy metals fine. EMGs fine (I keep getting conflicting results).

Now I get the.. it must be your fibromyalgis line. So apparently this neuro only wants to treat my cervical dystonia with botox but won't do migraines or the autonomic issues. He sent me back to the rheumy for that - she said autonomic issues are the neurologist's. Hey at least you are seeing good docs who admit they don't know and aren't bouncing you hither and yon.

Sorry I couldn't help but I hope knowing you aren't alone is a comfort.

[dianne.fraser]

Hi. Sorry to hear that things are so confusing and frustrating. My blood sugar was recently found to be weird too.

I've been limiting my carbohydrate intake for years (it helps limit my fatigue). It doesn't help me to eat low GI carbs - to limit my fatigue, I need to keep my total intake of carbs low at each meal or snack.

BUT I've had my fasting blood sugar and insulin levels tested at least annually for the past five or six years and its always been normal. I refused to have another glucose tolerance test when the result of my last one was normal but I was very sick the afternoon and evening of the test; at my sickest the next day; much more fatigued for many days afterwards; and left with really badly aching toes for more than a week.

Recently, after reading on the Forum that other people have been diagnosed with reactive hypoglycemia, I asked my doctor if we could check whether that was a problem for me. I was given a glucometer (and training and support from the practice nurse) and told to challenge myself with carbohydrates for a week, take regular blood sugar readings, and report back. I lasted for three days. I basically ate my normal diet, but ate three high-carb meals over the three days and one high-carb snack. I took my blood sugar every hour after waking.

Basically, I didn't respond to the high-carb foods as a diabetic would, but my fatigue levels increased dramatically. On day three, I was extremely fatigued after eating spaghetti for lunch, but my blood sugar was fine - it didn't reflect how I felt. I was struggling to stay awake at 7pm that night, and I was asleep by 7.30 but, once again, my blood sugar seemed to be normal. What was abnormal, was that each morning I woke with higher blood sugar than the day before. On day 4, my blood sugar on waking was 7.8 (think this is around 140 in the US) - my doctor decided I had to stop. She's now referred me to a metabolic specialist - someone who specialises in genetic metabolic diseases. My appointment is scheduled for 20 December.

The query is whether I have a fault in my carbohydrate metabolism that might have caused neurological damage over many years, resulting in the dysautonomia. I'm hoping that this doctor might also be able to consider whether there is a link to my exercise intolerance (there is a series of carbohydrate metabolic disorders characterised by exercise intolerance, some of which, unchecked, I understand can result in physiological damage).

It might be another dead end, but I figure its worth checking. It would actually be good to hear from others on the Forum who have carb and exercise intolerance, or just weird blood sugar, who have been checked for these conditions.

Dianne

[Noreen]

Wow, Dianne, that sounds very interesting. You will definitely have to let us know.

I know you mentioned neurophysiologist before but I am unsure how to locate one in the states. Anyone have ideas?

[issie]

Add me to the list of muscle weakness, exercise intolerance. I have to push myself up too and yes it does kill your arms. I do believe there is something we and the doctors are missing. Question -- do any or all of you with this issue feel that you have the hyper form of POTS? I'm feeling that there is an Adrenal issue here. Note some of my OUT OF The Box Thinking in a post I listed.

My sister has that same type of blood sugar response - they call it a flat line response. It's basically where your body doesn't go up in your sugar, like it should. They told her she was insulin resistant and it was a sign of probable diabetes in her future. Sugar issues do run in my family and I feel there is probably some sort of gentic component to it - in my families case. My sister, doesn't have POTS but has severe orthostatic intolerance. She passed out on the TTT within 8 minutes and her heart stopped. They were about to give her epi in her heart and it started back. She also has severe Chronic Fatigue. She actually functions alot better than me.

My dad also has some sort of neuropathy. Although he does have diabetes, they don't think his neuropathy is related to it. He has always kept his sugar balanced with his meds and diet. He checks it every morning. But, his father also had neuropathy and now me and my sis are demonstrating signs of it too. It has to be gentic related. I'm not diabetic and neither is my sis. But, we both are insulin resistant. That part of our body function doesn't work properly.

I started using GTF Chromium and have no wild swings with my sugar, like I used to. It could do what you were talking about. Now, there's no issues with it. I seem to tolerate carbs better too, since using it.

Dianne, you could be reacting to the wheat in certain type of carbs. It could be you have a glutten sensitivity. That's not a full blown allergy, but your body reacts just the same as it would if it were. Some people just don't do well with grains.

Has anyone tried digestive enzymes. That helps your body to start metabolizing better and then you may not have as many issues.

[dianne.fraser]

Reen - your national or state-based Physiotherapy Association should be able to give you a list of physiotherapists in your area who have specialised training to treat people with neurological conditions. Whatever approach you take, I really hope you find some relief soon.

Issie - I was gluten-free/wheat-free for many years, but I remained very fatigued. Eventually my doctor decided that I was allergic to every grain except for rice. It was by restricting my diet fairly extremely at that point that it became apparent that my fatigue was persisting, and seemed to follow my rice intake. Excluding rice dramatically reduced my fatigue levels and, unexpectedly, resulted in the clearing up of the acne that had affected me (sometimes very badly) throughout my adult life.

At first I thought I was allergic to every grain in the world, and that I was the first ever person to be allergic to rice..... I know, it sounds dumb now. A couple of years later I worked with a woman with pre-diabetes and I queried whether my problem was really with carbohydrates. Thats when I started my annual blood sugar and insulin testing.

It is interesting to hear about your family connection. I've been worried about one of my nephews, who has seemed to have abnormal fatigue in the past and who, at 19, this year developed a really bad case of acne that wouldn't heal. I found myself telling him to stop the carbs - no bread, no rice, no pasta. It worked for him, but he hasn't stuck with it. He's young. It was because of this that I decided that I really needed to source the carb problem - if I have dysautonomia because of harm caused by some kind of genetic metabolic problem, then maybe there could be screening for my family so that any young ones who are affected can lead better lives and have a better health outcome.

In answer to your question about hyper-pots - I don't have pots, but I agree with you. I think that there is definitely an adrenal issue going on for me - I get panic attacks (not so often now that I manage my illness better) and I had a bad reaction to Pristiq last year. Something else that I'm hoping the metabolic specialist will be able to consider.

Dianne

[comfortzone]

nmorgen, Reen, Dianne, Issie -- Thank you all for your invaluable insights and ponderings - hugs to each of you. I do feel validated and more energy when you share your stories as well - and between us - I bet we'll figure it out some way, some day, some how - and if not ... well you can't say we aren't trying!

Is it endocrinology that investigates any genetic metabolic issues? I guess I feel that if a sugar issue is told to be the likely suspect for confirmed SFN - that perhaps more specific testing than a 2 hour glucose tolerance test might be order -- or is that overkill? I've never had an insulin level checked before.... My experienced 'type' if you will of exercise intolerance is one of doing fairly well for about half the day - and then being compelled to lie down for awhile to equilibrate. I thought this was dysautonomia and labile blood pressure related - but perhaps it is not. I have just a couple of test results to come back yet before I got home.

If someone told me to just 'deal with it' I would happily oblige them - but what I have is disabling. That is why I went to Mayo. I need (desire) to get back working in my career - instead I am cooking for short hours in a restaurant ... as all I can handle is short hours.

I'll ask if there is a blood panel that further delineates the origin and type of elevated HBA1C levels, insulin levels, and any other likely metabolic issues. If anyone knows the names of specific labs that might reveal answers I'll ask the Mayo doc for those and my reasoning....so far they have been on board with all my suggestions - they have been so good to me!

[nmorgen]

I have the hyper POTs. I know that norepinephrine is involved in converting glycogen to glucose and stimulates glucose uptake. Maybe the large amounts or sensitivity to norepinephrine is messing our systems up?

You could ask to be tested for IR or just talk to them about being tested for various metabollic problems. The specialty would be an endo.

As far as low carb diets, I just can't stay on them very long. I feel like total poo, and I really have no energy along with horrible headaches and dizziness. Maybe if I stuck it out past 2 days that would go away, but I feel so bad that I can't seem to push through it. Maybe if i could be knocked out in the beginning, lol. Has anyone else tried a low carb diet?

[dianne.fraser]

Nowwhat

I understand that endocrinologists investigate genetic metabolic issues, but its a sub-speciality - not every endocrinologist would be able to do it. The endocrinologist I've been referred to works at an adult metabolic diseases service that investigates and provides care for patients with all sorts of weird inherited disorders relating to metabolism.

Your family doctor will be able to check your fasting insulin levels as well as your blood sugar (either fasting blood sugar or glucose tolerance test) and refer you on if it looks as though something odd is happening.

Re exercise intolerance - I always felt fabulous when I exercised, so it wasn't clear that I was exercise intolerant until I started collapsing afterwards (my blood pressure was collapsing). I would rush home after the gym or after a walk around the lake and sit in my loungeroom waiting for the collapse, then I would sleep for hours and be much more fatigued for days afterwards.... I gave up exercise when I was 40 - it was making me too sick to continue. It turns out that one of my cousins worked it out when she was in her mid-20's - increasing fatigue with persistent exercise. Her doctor told her to stop - she did - and she's led a basically normal life ever since. Her illness didn't progress. I think I did physiological (or neurological) harm by continuing to exercise.

I think its important to remember that there are big differences as well as big similarities between us all - a thorough assessment is really important in order to understand our individual illnesses. This is what I'm hoping to get from the metabolic specialist - a good assessment to clarify what I'm dealing with and what my treatment options are.

Dianne

[comfortzone]

Thank you Dianne - so much. You and the others here are so intelligent - I'm happy to have met you all. Yes when I told my doctor how lousy I felt with exercise -- she asked what I was doing. I told her 1 1/2 hours of physical therapy 2 to 3 times a week and walking about an hour to two hours everyday. Her eyes about popped out of her head! She told me that eating properly is most of weight loss - not exercise. She told me to knock it off - that some 'bodies' aren't meant to do that and she believes I'm one of them. But honestly it wasn't until I really pushed like that that the weight started to come off - and as I have so much to lose - I was determined to do this - even if it meant upping pain meds and doing just as you say - collapsing after and being generally useless. My house got utterly unliveable for awhile because even simple housework was too much. I work for 4 hours on my feet as well 3 or so days a week - the blood pressure plummets after and I have to lay down to bring it up -- yet I might not have dysautonomia? I'm so confused! I hope I get to see my doctor one last time to discuss this issue and ask if I need to get follow up with cardiology on that one. So there's that question -- and also the crazy blood sugar questions as it relates to energy stores and activities of daily living. Well I'm in my last couple of days at the Mayo Clinic - I almost have more questions now than when I came.... & probably so do the doctors LOL.... I'll read and reread everyone's posts --- and try to digest it all (good thing I lost weight before I came here - out of my element and routine I've surely gained 5 pounds back :-( ) But tomorrow's a new day & again thanks everyone for sharing about blood sugar issues ~

[comfortzone]

Reen - Hug! I know it is sooo frustrating when the docs sort of wish to turf you to this one and then that one - I had a neuro tell me I DID have dysautonomia based on my blood pressures and holter monitor and symptoms but decided that because it was not caused my MS and some of her specialty cases that it was nothing she would touch. Another neuro told me my fatigue was all in my head. Thankfully Mayo validated me - commiserates with me and tells me to 'try not to get discouraged, don't give into it'.... That was pretty cool to hear - yet it really doesn't give me much to work with in terms of how to handle things. But really I guess I can look at it like I have to diet and exercise now for life - with this pre-diabetes, hypermobility syndrome, sleep apnea, labile b/p - so that in and of itself is a full time job. Exercising causes pain and symptoms that are unpleasant - yet in the end - this just may be my life. Now that the joint replacements are all 4 over and done with - I have to lose the weight that having wicked arthritis lead me to gain. I was so immobile for so long. Need to get trim before thinking about revisions. Heck the hips are already 5 years old, the knees are two now. It's hard to have courage for all everyone faces here - but supporting each other and sharing what we learn is a great way to connect and gain strength! I'll definitely post if I learn anything soon...I'm sorry they are running you in circles ... that stinks big time!