Hi everyone. Just joined and all this is new to me so i apologise for my ignorance of any protocols etc. Has anyone with peripheral polyneuropathy had similar symptoms? I know they vary widely but i am so frightened and the neurologist is taking so long.
I shall be as succinct as possible.I present numerous recognised PN symptoms sensory, motor and now autonomic . However both my legs have blown up thigh to knee, very swollen knee joint, ankles, feet and my skin goes a lobster red - rather like a hives rash - especially at night or after exertion such as walking. Was checked for DVT and CT for pelvic/abdomen compression and rheumatics - all clear and negative. I also now get internal tremors (you cant see them) - rather like panic attack but its not its my whole body. Its not MS.
Because of the swollen legs i now have superficial phlebitis in both legs!.

All this plus the dreadful pins/needles, burning, loss of temperature regulation, numbness,muscle weakness,cramps - at night etc...... my face cheeks are now even numb!

I have a past history of cancer so have been well radiated breast and hip bone and subsequently was badly damaged.Have lived with disabling chronic pain for over 8 years now.I thought i knew what pain was but PN - well that is something else... i am going crazy

Im on many drugs for chronic pain - methadone , oxycodone, naxproxen , pregaba, zopiclone sleepers (i just cant sleep whatever i take) but nothing helps this PN.

Some of my symptoms are throwing British neurologist - any advice, thoughts would be so welcomed. Thank you all. God Bless x

Welcome to NeuroTalk...

People who have had cancer treatments, may have damage to the mitochondria of the cells. Did you have chemo too?

Swelling like you describe can come from some uncommon drug reactions. Do you take an ACE inhibitor for blood pressure?
These can cause tissue swelling, with burning pain...it is called angioedema. Angioedema also accompanies some cancer, mostly leukemia or lymphoma types. There are special tests for immune markers for this....

This link explains the testing for the various types of angioedema....
http://www.haea.org/professionals/angioedema/

Some are acquired (cancers, drugs) and some are hereditary.
This is difficult to diagnose, but the blood tests are explained in the link.

Certain activities cause it to flare. Repetitive motion is one trigger. So is stress, trauma or pressure on a body part.

So I think the answers for you are going to difficult to get.

All people with PN symptoms should be screened first for low B12 and low Vit D. If your B12 is low (below 400pg/ml US units), then you can supplement to bring it up.

Some people with a cancer history may find acetyl carnitine helpful, 2 grams a day in divided doses. It can be used with chemo to protect the mitochondria of the cells so damage would be less for them.

Hello Mrs D. Thank you so much for reply. What a fantastic site this is. Just being able to read that others have exactly the same experiences and symptoms has calmed me down. I felt that i was going mad. No one was listening.

My last cancer treatment was heavy radiation for suspected bony mets ten years ago 2000-2002 . My breast cancer was 14 years ago. I was 'left' on tamoxifen and Zoladex injections as im oestrogen positive for fifteen years stopped 2006 . I was radiated twice to the illiac crest area, then a larger radical blast to a wider field which covered illiac , entire left pelvic area and down left leg to knee(2000-2002).I was badly damaged from negligence plus ovaries atrophied ie 'burnt' to cinder as i wasnt shielded properly. The 'suspected bony mets and heavy treatment ' issue - thats another story.

Having been left disabled and damaged through previous inept NHS doctors im seeing history repeat itself with neurologist humming and haaring over confirming diagnosis and actually doing something now - everyday im getting worse. This has been progressing in an acute manner since New years eve 2012

Despite extensive research can not find that my swollen legs - thigh to knee area , red lobster rash fit in with any PN symptomology - worsens on any exertion. As i said its not DVT although symptomology presented cries out check again just in case its deeply inguinal .Ive hit my GP with cellulitis, erythromelalgia, vit deficiency...Ive demanded full body MRI - and full bloods again - having tuesday I dont know Mrs D im lost what else to do. Angioedema - tried antihistimine but nothing... my veins are just being squeezed to surface as i said this phlebitis both legs is worrying
My B12 is high. Do not take any ACD meds for blood pressure etc. Only take opiates for pain and thyroxine( unbelievable they hit my thyroid with radiotherapy - mistake again) for hypothyroidism. One Dr tried to tell me PN was opiate withdrawal.......take more so if it goes away you will know... Hmmm Ok. Guess you will appreciate how frightened i am becoming.

One thing the specialists are ignoring is that i have had two lumps come up in the left damaged groin in last 18 months. They were v painful, i was very ill - like flu and went of own accord after 3 -4 weeks roughly. Had ultrasound and lymph gland was abnormal shape but not cancer. Was not hernia. Plus bloods no infection. I havent felt well since these lumps .Have also been under dreadful stress last 18 months .

Would welcome your invaluable opinion/advice/thoughts.

God bless x

Angioedema does not respond to antihistamines.

It is however connected to an acquired type which may accompany lymphoproliferative disorders. If you have a lymphoma, or low grade leukemia, the angioedema comes from disruption of C-1 inhibitor.

http://en.wikipedia.org/wiki/Angioedema

Angioedema does not always have hives. Just the swelling and some redness, and pain/discomfort.

This condition is difficult to diagnose. There are special blood tests for it requiring expert evaluation. It is a relatively new medical problem, that has just been elucidated. So many doctors are not familiar with it.

This is a link for doctors, but it is very understandable to patients:
http://www.hcplive.com/publications/...-04/2005-04_02

You could have the acquired type, due to your medical history, or the emergence of a new cancer of the lymphatic system or blood.

Good morning from UK , Thanks MrsD and Aussie99 - just sharing experiences with fellow sufferers is such a comfort. I thought i was going mad! Having full MRI and cranial today. Whilst neuro's is going on probable diagnosis of idiographic peripheral polyneuropathy , MS is also being mentioned. Think once i have clear diagnosis ill feel better - its the not knowning . Im concerned that what was totally bilateral is now affecting right side more - leg, foot, arm, face cheek. Ironic as my extant damage is actually the left hip/pelvis area. Well, i shall let you know tomorrow as my fantastic oncologist is giving me MRI results following day. She knows how close i am to a breakdown .As you all know i have been waiting since new years eve for someone to do something. In the end i by passed primary care and phoned her secretary in desperation. Everyone keeps mentioning the dreadful stress ive been under the past 2 years as if it was the catalyst for this sudden onset of PN. God bless x

I am sorry to hear about your legs. Have you thought about a Doppler study of legs? There is no radiation involved and it's painless. They will be able to check veins and arteries very clearly.

Don't thank me too much I had one of my moments there for a sec and posted your response on another thread, and their response on yours. So sorry about that. I was really busy at work and try to do replies/responses between answering phones, emails and so forth. Proper reply above.

Good evening from UK. Yes , doppler and nerve conduction tests etc. to be performed Monday through Neurology. Felt yesterday that specialist was insinuating my symptoms were psychosomatic. Really! Maybe he would like the burning fire, pins/needles, cramps, and loss of muscle strength. I couldnt make my right leg react or my right arm on tuesday - today my leg is much better. Such a plethora of symptoms that change on weekly/daily basis. Its almost like this PN is progressing slowly since new years eve through a pattern - i dont know. Does anyone else experience this sense of progression and pattern? Like it works through a certain pathway. Some of the severe symptoms like dreadful nocturnal cramps have now morphed into total numbness.

My MRI was fine.No metastic spread or new carcinoma so great news.

I would love to hear about your experiences with symptom changes.I read your diary blog MrsD - thank you. Has given me the strength and courage to continue to fight the NHS for a definitive diagnosis.

Finding my loss of independence very difficult. I cant even raise my arms to wash my hair today. Occupational therapy are 'adapting' my home to make life easier. I feel useless. Does anyone go into periods of remission from PN. Can it start bilaterally and then unilaterally? I keep reading and researching until im blue in face - everything is so contradictory. I havent had or got flu but i feel like ive had flu for 3 months!

God bless x