Hi All,

Hoping to get some advice on not just what I'm experiencing, but also how to negotiate the health service (UK) so I can do some investigations without alienating doctors.

I'm a 28 year old male from the UK with a 5 year ish history of health problems. My medical records only state that I have Reactive Hypoglycemia and IBS but day to day I experience so much more than that. I gave up on doctors last year when they only wished to prescribe antidepressants or laxatives.

Since about a year ago my symptoms of neuropathy have been getting progressively worse. For about 3 months last year I had shooting pains in my right ankle that would 'pulse' for about 5 seconds and stop, continuing in waves usually twice a day. Concurrently I was also experiencing further weakness in my arms.

The shooting pains then stopped and general numbness and tingling settled in, and it has been getting worse since.....

• My legs 'tingle' and I have that water trickling feeling
• Various parts of my arms and legs will be numb upon waking everyday
• My fingers cramp up and I've lost dexterity
• Ice cold to the touch, especially in hands
• Lost strength in my arms, e.g. carrying bags is much harder or hold my arms above my waist for any length of time unassisted
• Frequent urination
• Constipation
• Constant horrible dizziness, lightheadedness, trouble concentrating and blurry vision

Clearly something serious is up. Because of my doctors reluctance to help me in the past I am reluctant to go back but I can't go on living like this. The constant dizziness is the worst.

Does anyone have any advice for not being fobbed off and what to ask for with regards to testing?

In terms of what the cause could be I suspect it is either related to toxic exposure or blood sugar or both. I'm likely to be laughed out the doctors office if I push the former. I do have blood sugar swings but as yet no diagnosis of diabetes. My fasting blood sugar remains in the normal range. It would seem far fetched to think peripheral neuropathy would occur prior to getting a diagnosis of diabetes although I am certainly at risk due to my hypogylcemia.

Can anyone offer any advice? The rate of progression is really scary and to have not even had a diagnosis at this state troubles me.

Many thanks,

Welcome, to Neurotalk!!

Being that Diabetes is one of the most common causes of both PN and autonomic neuropathy, your thinking is right in line.

It is, in fact, quite possible to have symptoms even with just pre-diabetes. Symptoms will appear as soon as the nerves are damaged and it doesn't take much in the way of high blood glucose to create that damage.

Therefore, I would start with a 3 hour glucose tolerance test and serum A1C. This will give you a better idea of your blood sugar level.

You mention toxic...what substance have you taken that might fall into the category? There are many toxic medications that are known to cause PN...statins, antibiotics, chemo, etc. So the more info you give us, the easier it is for us to help....like any illnesses that occurred just prior to your symptoms, other medications you take...and so on.

Have you had an EMG/NCS ? I would definitely ask for one as your description fits a lot of the onset of my neuropathy symptoms. I have hereditary neuropathy, and had a lot of mechanical issues as a child, but the shooting pains in the ankle and the numbness in legs and arms started much later.
The other test that is important is the skin biopsy. It diagnoses small fiber neuropathy which is what you often get with diabetes. It can be hard to diagnose without the skin punch biopsy which is a simple procedure.
I believe that the symptoms you are describing will show up on the EMG/NCS as they sound quite advanced.
I hope that you get some help soon. This is very scary in the beginning for everyone, but it does get easier. It can be a frustrating condition to treat, though, doctors are often not much help which is why there is so much self-help info here. Spend time reading about the supplements which others have found useful.

Good morning,

I have to agree I would do a nerve test. This will help to see if your nerves are slow, etc. it (the things going on with your body, not the nerve test)is scary, but there are many wonderful people on here who offer support and advice. You are the advocate for your health, keep a record to the best of your ability. I hope you find some answers soon. I have autonomic and sensory neuropathy as well. They believe mine is genetic, bug not sure from where. I am only in my 30's, so I understand the frustration of it hitting so early.

Welcome to NeuroTalk:

Please watch this video....it is long but very important.

http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

This could be the source of your problems, if you have problems absorbing B12 from food, are a vegan or use certain drugs.
Pernicious anemia also is a possibility and that can be inherited.

Thank you all,

En bloc - thanks. I think I had a 5 hour blood sugar test last year. It showed a sky high spike after the sugar followed by crash, which then levelled off into normal range. Suffice to say it wasn't fun. I was hypoglycemic but not diabetic or prediebetic. Might be tricky to request a repeat after only a year but the clinical picture has certainly changed since then.

The toxins thing is a little tricky to explain. Im not currently on any medications nor have I been in the past. I did however develop strong environmental allergies, and a prolonged gas exposure left me with significant symptoms that changed my life for the worst. No one has really believed me but I know it to be true. My liver enzymes are always chronically elevated and I know my liver to be a factor in some way. Further investigation hasn't yielded anything. No history of alcohol.

Susanne - thanks. I've not approached my doctor about anything nerve related yet. I assume I would need a referral to a neurologist before hoping to get these tests?

Sham - thanks. Sorry to hear of your struggles. Hope you have found a way to live reasonably comfortably.

Mrs D - thanks for the link. B12 and methylation fascinates me and im sure I have problems with it. I've tried b complex vitamins in the past and it hasn't been a pleasant experience. I can't seem to metabolise nutrients properly and I'm sure my weak liver function is involved. I tried 1mg a day and by the third day I was wired and tired, anxious, my skin was crawling and I couldn't carry on.

Can the very fact I struggle with B vitamins suggest I might have an issue? I don't know how to start if this is the case.

I think I had a B12 test last year that wasn't too concerning although I wasn't experiencing these symptoms a year ago.

Many thanks all,

Konzy,
What is your diet like? Even if what you are eating is not the primary cause of your symptoms, it could be contributing. I suggest you choose mainly whole plant foods, and avoid simple carbohydrates and other processed foods. Keep the added oils, sugar, & salt to a minimum. Emphasize leafy greens. See what happens. What do you eat and drink in a typical day?
Ron

Konzy.... if you react to the COMPLEX ... that is pretty common.
It would be based on the dosage you are using.

Some Complexes are moderately low dose... like Jarrow's B-Right.
Others are high like B-100's.

I would get the test results you had previously from your doctor, so that it would be more accurate to advise you based on the numbers. (tests from other countries often have different reporting results ..in US it is pg/ml... so get your numbers and the letters when you ask for your test. There is a conversion table to convert other concentrations to pg/ml.)

Modifying your dosing...to lower milligrams, or taking every other day...may help with your symptoms.

But really you need testing... and if you do get more blood work, also get the B6 measured. It is usually that portion of the Complex that bothers people.

If you are very low and start just B12... you may feel energized at first. That would be your body trying to heal itself. Taking it every other day may help. Is the product you are taking cyano or methyl form? Some people cannot handle the synthetic cyanocobalamin as it contains cyanide. The other forms often work better.

Also people with heavy metal poisoning (mostly mercury) may have symptoms/side effects from methylcobalamin. You would need to check that with a heavy metals blood screen. Heavy metal poisoning (from the environment) can be treated with chelation to remove them.

--testing for celiac/gluten sensitivity would also seem to be in order--at least the serological tests (anti-gliadin IgG and IgA, anti-transglutaminase igA, and total IgA; this last, if not in the normal ranges, can skew the results of the other mentioned IgA tests).

Moreover, that zoom/crash in the 5-hour glucose tolerance test--the reactive hypoglycemia--implies insulin resistance/metabolic syndrome/pre-diabetes (though there are certainly people who experience a hereditary form of this--but wild swings in blood sugar either way are not good for nerves). Were insulin levels checked along with blood sugar levels during the test? That can often be revealing.

Sorry to hijack this thread, but I have the EXACT same symptoms as you Konzy and am just as scared as my doctors do not seem to have a diagnosis!

So, my question to you experienced folks out there is this...can you have normal vitamin levels in your bloodwork and still have an issue with absorption? Also, can all your baseline glucose levels be low and still have a prediabetic condition that may show up in these more advanced tests you mention (like the A1C)?

One last question related to the toxicity issue. If you have shown higher than normal levels of organic mercury in your bloodwork (30s), would this be enough to warrant such progressive neuropathy?

Thanks...I am newer to the forum as well and scared as ****. You are not alone Konzy...

Cat1234