Hi everyone, you have already been kind enough to reply to my first message on here. My symptoms have continued to progress and I am so worried. I hope you might be able to direct me or offer advice ref further diagnostic tests. I have no diagnosis at all at the moment from anyone apart from an autoimmune illness called ankylosing spondylitis which is now believed to be unrelated.

These are my symptoms:

-LEGS: Burning, coldness, numbness , stabbing, throughout all of legs, particularly bad in thighs and knees hurt alot. Has progressed from strange sensations to awful pain over the course of the last 6 months to a year. Legs have shrunk and muscles are weak and skin saggier.
BURNING LIPS - I occasionally get the most severe burning in my lips and tip of tongue, this turns my lips bright red, swollen and they peel and go dry and crust over (lovely)
- DIGESTION - no appetite at all when this started (18months ago). This had improved alot recently despite the leg problems progressing and now thats back again along with shaky nervous feelings inside my chest and pulsating digestion system. (I had been taking tramadol which I stopped and had a massive binge of eating junk food after months of paleo type diet. I also changed over from gabapentin to pregablin so could be any of these reasons)
- CHEST/HEART? - Strange heartbeat sensations, what seem like palpitations and extreme weakness, almost like its an effort to breathe sometimes.
- EXHAUSTION - The most extreme exhaustion I have ever known, throughout my whole body.
- Tingly arms and hands.
- MALAISE - General feeling of feeling unwell, like I have the flu.

I have so far had:
-blood tests for inflammation which show only slightly raised levels.
-MRI scans of spine and brain - these are apparently clear and show only slight degeneration from spondylitis
-Nerve conduction test and muscle strength tests all normal
- small fibre skin biopsy on legs


I am awaiting results of skin biopsy and prey that they show something otherwise I will be assigned to the hypocondriac corner forever. Is there any advice on what else I can pursue. I am off sick from work because I cannot function at a normal level let alone work. I am lucky enough to have insurance cover with the job and need to make the most of it whilst I can.

Please any advice from anyone will be welcomed. As I have already said in my last post I am now a single mother looking after my 2 year old son and terrified beyond words imaginable how I will contiue to look after us both. If there is anything behind this and a chance of treatment I am desperate to at least know and try it.

Thank you all in advance :-)

If your skin biopsy for neuropathy comes back positive for neuropathy, consider autonomic testing at the closest autonomic center to your home. There are not a lot of them and not every state has them.

Also, testing for autoimmune disease, such as having an ANA and ENA to rule out diseases like Lupus, Sjogrens etc.

If you haven't been tested for Lyme disease, that too.

That's a start.

What your b-12 number is? Many stmptoms can manifest from this deficiency. In reading your posts I've seen nothing about your nitricional values. In visiting Neurologists I remember that Magnesium, Copper is also important. I was taking Zinc but was told to stop as Zinc could drive down the Copper that I needed. While you wait for the right Dr. to get a right diagnosis, it might be helpful to start a journal and include dates and pain levels and the thing that you are going to do different. Nutrient dense foods and leafy greens with not so much carbohydrates. Limit white foods as they turn to sugar and flares inflammation in many people ,diabetic or not. I wish there was a magic solution but if there was, this website would never have happened. Many get better and never know from where their help came. Methylated b-12 is the kind the body will absorb. There are many platitudes that you are too panicked to appreciate but you said anything from anybody right? Take everything with a grain of salt, crosscheck advice and dont believe everything on U-tube. I have found conflicting info there.Excersise to tolerance. Study for Mitochondrial health. Take ownership of the things you can influence such as diet and excersize. Try to figure out if you were toxic(the bouts in the bathroom you mentioned) or if you were malnourished(defitiiency). Did you experience trauma between the birth of your child and your first symptoms? Enough of my blathering, I wish you strength, patience, and help soon. OOOOHHH a couple more platitudes. Pain can drive depression, if your pain is unmanageable, get help. Sleep is necessary, if you get less than 5 hrs, get help. Good Luck, Ken in Texas.

I'd like to say something here.

After a baby comes, sometimes the mother shows major problems with low nutrients that the baby has taken from her to develop. Especially the brain and nervous system. The baby takes enormous amounts of essential fatty acids (Omega-3's) to develop normally.

I have seen when I was working, young women who had terrible skin, peeling and redness of the face after the baby arrived.

So first off I'd suggest you take some Omega-3's generously... daily and some flax oil, too. You can do fish oil or Krill oil... 3 a day. (2 a day if the super Krill type). If you are still breast feeding you can get the Expecta for new mothers that has vegetarian DHA in it. This is over the counter. This may really help.

Also if you had antibiotics in the recent past, some Kefir to re-establish some normal gut flora, can help too. Lifeway Kefir has 12 strains of probiotic in it that can really help. Easy to find in stores now. At least 4 oz a day may help push out any Candida you may have from antibiotics.

Magnesium is helpful for those taking Omega-3's as it helps with their metabolism, as well as a modest B-complex like B-Right by Jarrow. Taking some separate B12--methylcobalamin is good too, as the baby depletes that as well. Take this once a day either 1mg or 5mg daily on an empty stomach.

Try these now, to see if they help.

[QUOTE=mrsD;1123911]I'd like to say something here.

After a baby comes, sometimes the mother shows major problems with low nutrients that the baby has taken from her to develop. Especially the brain and nervous system. The baby takes enormous amounts of essential fatty acids (Omega-3's) to develop normally.

I have seen when I was working, young women who had terrible skin, peeling and redness of the face after the baby arrived.

So first off I'd suggest you take some Omega-3's generously... daily and some flax oil, too. You can do fish oil or Krill oil... 3 a day. (2 a day if the super Krill type). If you are still breast feeding you can get the Expecta for new mothers that has vegetarian DHA in it. This is over the counter. This may really help.

Also if you had antibiotics in the recent past, some Kefir to re-establish some normal gut flora, can help too. Lifeway Kefir has 12 strains of probiotic in it that can really help. Easy to find in stores now. At least 4 oz a day may help push out any Candida you may have from antibiotics.

Magnesium is helpful for those taking Omega-3's as it helps with their metabolism, as well as a modest B-complex like B-Right by Jarrow. Taking some separate B12--methylcobalamin is good too, as the baby depletes that as well. Take this once a day either 1mg or 5mg daily on an empty stomach.

Try these now, to see if they help.[/QUOTE
Thankyou all very much for your responses. Ken, you are right, I am somewhat panicked and my messages probably convey that :-( but everyones words / advice help spur me on so thank you.
I have over the past few months been to see a nutritionist and no tests were done but my diet has been exposed as being absolutely terrible and I changed this a few months ago to be veg and fruit based with fish and chicken. It didnt improve things and neuropathy then developed and progressed whilst doing this and I have lost the will to continue but will get back on the horse again.
I have ordered magnesim, alpha lipoic and will also look at B12 and omega 3.
I will also go back to my GP and discuss further testing such as ANA and ENA. My rheumy does not believe I have any other disease than spondylitis but this is cleary not the case at all. I will pursue the bloods again so thank you.
I wasnt eating great during parts of pregnancy and certainly wasnt afterwards so nutritional status prob isnt great. I did have vit d and vit B6 checked by my GP and these were apparently normal.
Not long after this all started it turned out I had a urine infection and was given antibiotics. The problem started before the antibiotics but I doubt the antibiotics helped.
Thank you all kindly.
I lie in bed dreaming this will just go away one day - it truly has transformed my life - but Im sure you all understand these feelings yourself.

Do you recall which antibiotic? Most of those used for urinary tract infections cause PN.
(nitrofurantoin, Cipro, Levaquin, etc)

If it was not for the excellent advice of Mrs.D i would say test for Lyme but it also looks like it could be something autoimmune to me.

I often wander why my nerves got so damage after the initial intoxication took place.
I my case it was damage with a long time delay this may be also what is happening to you.
They never measured something autoimmune but i suspect the immune system overreacts somehow.

Mrs D, I cant recall the name of the antibiotic but I was feeling ropey before the antibiotics. I only took one course of them as well. I have just started taking a probiotic for my stomach.
I do feel like this must be autoimmune as I have an autoimmune disease already and although they say this is unrelated, i believe it must be.
I am going to pursue more bood tests such as ANA as suggested. My rheumy discourages me pursuing any more blood tests. He just says oh you have spondylitis so that explains this etc etc. It doesnt explain this.
I will try all the suggested supplements so thank you for that :-)
I am so eager to understand exactly what I have and why this is happening so that I might be able to identify treatment for the underlying cause. I would love to hear from anyone with autoimmune mediated neuropathy and what treatment they had and has it helped?
Thank you all for your time, it is so comforting. to speak to others going through this. When I have spoken to friends, they dont even know what the term neuropathy means. I guess they wouldnt as you probably only know it when you get affected by it. Happy to have found the group.

Possibly Fibromyalgia as a secondary condition??

http://neurotalk.psychcentral.com/forum12.html

https://www.google.com/search?q=firb...yalgia&spell=1

Have you been checked for anemia?