Hello Everyone!

I hope this finds you feeling good!
I'm new to all of this, feeling isolated, and so relieved to find your terrific support community. You're all so friendly and welcoming, and I thank you for that!
I'm currently trying to find the cause of peripheral neuropathy symptoms: varying sharp, stabbing pains, deep aches, some numbness, in my feet, lower legs to knees, hands, and forearms. These symptoms began at least 3 - 4 years ago, started with a feeling like bugs were crawling on legs, then felt like bees stinging my feet, or someone's boring hot needles through my limbs - now I pretty much ingnore it and can "tune it out" most of the day when I'm active and on my feet, but it becomes more distracting in the evening and at night, and I wake with it each morning.

I've seen a neurologist in Baltimore, had a NCS/EMG done in 11/06 confirming neuropathy, and again 5/08 (I haven't yet seen results) He prescribed Neurontin, which I haven't started taking yet. We're just begining to investigate the possible causes. He suspects it's auto-immune related.

I do have antiphospholipid syndrome, "Sticky Blood" which can (and did)cause excessive clotting - in my case, in the small vessels of the placenta during my pregnancies. Back in 2/91, I tested positive for the Lupus Anticoagulant antibody after miscarrying twins following IVF. During a subsequent IVF pregnancy, I was treated with baby aspirin, but still miscarried a litttle girl. When I finally had another successful IVF procedure, the Fertility Center docs put me on Heparin injections (which I requested based on the latest research at the time) which I injected twice daily throughout the pregnancy. I was the first of many patients to follow, treated with Heparin at that center, and I went on to have my first dear son. More IVF, another miscarriage, then another successful, "Heparinized" pregnancy gifted me with another precious son! (They are now almost 16 and 11, and yes, still dear as ever!). I'm grateful to those responsive doctors for trying something brand-new. Many patients don't learn they have antiphospholipid syndrome until after they've had a stroke.

It just goes to show you really need to be your own case manager, to pull all the pertinent info together for docs from different specialties, to put all the pieces together to get the big picture. These days, as busy as doctors are, they don't have the time that we do, to ponder and reflect on our unique circumstances, so it's got to be a partnership.

I'm sorry this has gotten so long! Here's some more of my medical history - I'm 49, and have had Endometriosis (2 surgeries), Raynaud's, and allergies, all three since I was about 13 or 14. Adenomyosis, Infertility (many factors, including antibodies against sperm, Endo, APS, male factor), Asthma (last 10 years)
Other symptoms: fatigue (never feel rested) bladder tenderness, blurry vision, migraines, dizzyness, low BP, chest pain daily (ache around heart) irregular beat, ruptured cervical disc, Fractured my pelvis 5 months ago, slow to heal. Most annnoying to me is the "brain fog"; my short term memory and focus are not there when I need them.

Man, I sound like a mess on paper, but you'd never know it to look at me because I just keep smiling and keep going, no one's aware. I feel more urgency to get to the bottom of it all to find the right treatment to hopefully stop the progression of the symptoms, because I feel less and less like myself, and less and less functional as the weeks and months pass.

I'm finding that I'll need to really bone up and sort through the latest medical info to guide my docs in attempting to find a diagnosis and proper treatment. Liza Jane's charts sound like just the thing to get me organized as I attempt to document/summarize my medical history. I've tried with no success to access Liza Jane's web page. Maybe it has a new home? If you know where I may find them, please respond.

Thank you so much!

Sue (JustKeepSwimming)

Hi, JustKeepSwimming! Welcome to NeuroTalk!

We have specific forums dedicated to each of your conditions, so please feel free to join in anywhere.

My guess is that you have tried to find LJ's site as a ".com" not a ".org" so, here is what I found, I hope it helps.

http://www.lizajane.org/

Hello and welcome to Neurotalk - you will meet many great and supportive people here!!!

If you need anything please don't hesitate to ask - I am more than happy to help you in any way I possibly can!!!!!

Thanks and i'm looking forward to seeing you around the forum soon

Best wishes
Alison

Thanks Cindy and Ali, for your warm welcome!

I found Liza Jane's charts, thank you so much, they're just what I need.

Take care, and thanks for being here!

Sue

Hello Sue, and welcome to NeuroTalk from me as well.

So sorry to hear about your medical problems but I see you've been given great advice already. Have a good look around the site, and maybe we'll meet again in one of the forums.

Hi Sue and welcome to NeuroTalk!