Neurologist appointment for numbness and tingling sensations

Hi , so after 6 months since I told my doctor I get a numbing tingling in my left leg and arm I finally saw a neurologist to see why. Since then I've had lap and been diagnosed with endo. So I explained that my right hip leg is painful but my left leg feels like when you sit on your leg too long and it goes numb then tingly as you feel the blood rushing back in, and my left arm gets a numb tingling from elbow into 2 little fingers like I've hit my funny bone. His reply was that endo doesn't cause pains like that as its just bad period pain, and there's no visible reason why I get this numb feeling. I tried to explain it does seem linked to pains as comes and goes but I notice it worse when my hip is bad. I'm convinced its linked but he wants me to go back in 6 months to see if worse. So does anyone else get this numb tingling? I know a lot of you suffer with hip, leg pain so know he was talking rubbish saying endo doesn't cause pain ! It was such a stupid comment I don't know how I didn't laugh at such a ridiculous statement!

Would love to know if anyone else has experienced this it doesn't effect me walking etc its just the pain in other side that can make me limp, but it is really annoying! Thanks

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  • I can suffer numbness and tingling also. I to had to go to neurologist who took lots of bloods etc and as a result was put on iron tablet and had to get B12 injections for 6mths. I also was diagnosed with fibromyalgia. I am at present attending a physio because of hip pain now. I think it all is connected to endo.

    aabb

  • Hi LillyFlower, by the sound of it you may need a m,r,i, scan on your left side from the neck down just to rule out anything else as i had similar pain to what you describe and also numbness in 3 of my fingers on my left hand when i wake in the morning. I also suffer with Fibromyalgia but knew it did not feel like that so eventually after a year i was offered a m.r.i. scan and the neurosurgeon found that one of my discs on my thoracic spine is pressing on nerves which all fit in consistent with all my symptoms. So if you are not satisfied hun ask them to scan you just incase it is a spinal problem rather than endo or fibromyalgia. I am now waiting for an operation to be done. Good luck luv & keep in touch.

  • Hi I'm currently getting pain in my left and right hip, across my lower back and down my left leg. The pain has intensified over the last week and has now stopped me running which I love.

    Yesterday I went back to the doctors for a follow up appointment and told her the pain was worse. I suspect it's endo or adhesions on my uterosacral ligament irritating the nerves. I think she does too but she suggested I go for a hip x-ray just in case. I went this morning and will have to wait a week for the results. She's given me codeine phosphate and paracetamol to take for the pain in the meantime.

    I don't know what to think really as the pain is scary at times and I'm wondering whether it will get better :(

    I do think that not enough is known about endo generally and what it does though and like you I'm fairly sure that the nerve pain is triggered by it.

    Hope you can get your pain sorted out xx

  • Hi thanks for all your comments. It's good to hear I'm not alone with the numb feeling it was a bit worrying but as he didn't seem concerned ill wait and see if it gets any worse. I'm sure its related but I could be wrong so just wanted to see what you thought. I know I can go slightly anemic but after bloods a while ago I was told my iron was boarder line so not worrying. I think ill start taking the iron tablets again. I'm not sure if it got worse or I'm just noticing it more cause I had a few days relief from pain. The hip leg back pain has been sugested that its nerve pain by doctor so been taking nortriptyline for chronic nerve pain. It has made it more manageable as I was limping when it was bad but now its just pain but no limping so at least an improvement. I hate to say it purpleburtle but the leg pains have gradually got worse and increased after my lap as think everything was annoyed but now with these pills and paracetamol and ibruprofen then codeine at night if really bad keeps me going. I know going for a gentle walk seems to help but then can be worse at night as feels like everything seases up! It will be interesting to see if the xray shows anything and as you do lots of exersize it could be something else but the leg and hip pain does seem to be a common problem with many of us.

    I think ill have to fight my way through fertility and gyni appointments for now don't think I've got the energy for anything else for now and then see in 6 months . So thanks for your replies xx

  • just lately i have the exact feelings you describe, like the funny bone feeling with tingling and numbness. it has been explained to me as a trapped nerve, and when i move my head to another angle the sensation stops....i had endo years ago and never thought it may be connected. everynight when i lay down in bed i feel it start, but when i find a position to stop it it goes back to normal. try this and then you can tell yr doctor. good luck xx

  • My tingling and numbness has been cured by me taking a high dose of vitamin B12 (either that or its a big coincidence). It is water soluble so you can't easily overdose on it. You should get a test for B12 - anywhere in the lower end of the scale is likely to be too low. You want to be 500+ really. There is a new test also that is far more accurate than the old one, but probably not used in most places. Jarrows 1000mcg sublingual tabs from amazon is what I take as a maintenance dose - at first I took about 4 a day. My levels were down at 200 - just within normal range, so I wasn't treated by the docs. I had this low level for many many years. Now its off the scale and I'm fine.

  • Hi thanks for the info I think ill try with the vitamin and iron and see if it improves. That's great that the b12 has cured you of this and thanks for sharing as I will definitely be trying it.Hip and leg pain back with a vengeance today so stops me noticing the numbness but now I'm sat here Im more aware again. I've looked at the symptoms for fibromyalgia and yes I have the aches pains and wake in the night but normally from pains or my dog running around!! I don't have migraines so haven't got all the symptoms but have some. I'm sorry you have to deal with this ontop of the endo. I hope your all having good days and thankyou for sharing your thoughts with me x

  • I tend to have shooting pain down my left leg and completely numb right leg. I can move my legs and walk fine, they are just painful or numb. I get debilitating pain in my abdomen/ pelvis and dull nagging pains in my back. I've never had my arm go numb, though; but I could see it happening. I don't get much of a tingling feeling either, just numb and it feels like how I would imagine being paralyzed from the waist down might feel.

  • Hi, I also get hip and back pain along with numbness in my leg! This is what prompted me to go back to my GP in 2010 when they finally diagnosed fibroids. It took another 2 years to get diagnosed with Endo after suffering for many years. It interesting to see from previous posts that there could be a connection between endo on uterosacral ligament and the numbing sensation???

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