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New member
Aug 5, 2016
SC - South Carolina
Hello All,

I have been seeing doctors for pain and parasthesia for over three years now with no diagnosis. Actually, that's not fair, because for 12-13 months while I was pregnant with my youngest and right after, I did not have symptoms and was not being seen for that purpose.

I presented to my primary doctor 3.5 years ago with various parasthesias (numbness, tingling, creepy-crawlies) and some vision problems. Originally, my primary doctor thought perhaps MS and referred me to a neurologist, who did a brain MRI and some eye and hearing tests. The primary doctor ran bloodwork and found nothing "clinically significant." My blood sugar was on the low side, but not a concern to him. I even requested that he check vitamin levels, and he begrudgingly tested a few.

I eventually complained to him of left hip / groin pain that I had had for a couple of years at that point. He referred me to an orthopedic surgeon, but the referral fell through, and then I got pregnant so I did not follow up.

Fast forward to a year ago, when I stopped nursing full time and started experiencing numbness in my legs again, and the hip pain got to be more problematic than it had been for awhile. We had moved, so I started over with a new primary doctor. She tested hormone levels, etc., and found nothing noteworthy. She referred me to an orthopedic doctor, who couldn't figure it out and prescribed physical therapy for a few months. The PT made my hip somewhat worse, and for the first time, I connected the pain in the hip with the other parasthesia symptoms, as my leg would go numb when they had me do exercises. Until then, I hadn't noticed that the pain had any connection to the parasthesia.

The PT said I had Thoracic Outlet Syndrome and SI joint dysfunction. The orthopedist recommended a cortisone injection, but did an MRI of the hip first as a precaution. The radiologist found that I had Tarlov cysts on the tailbone portion of my spine, which led to a neurological consult. The neurologist said that Tarlov cysts are very common and do not cause pain or other problems, and that they appeared to have been there my entire life without causing problems, so that couldn't be it. He referred me to a pain managemtn clinic, where they have had me try some nerve pain medicines (which I could not tolerate), Mobic (which helped a lot, although I know it can't be administered for more than a week or two at a time because of the risk to the stomach). In the intervening time, I've had times of terrible pain and other strange symptoms, which I hypothesize are caused by stress, anything relatively high-impact (like jogging or jumping), or sometimes I don't know what causes them.

Last week, the pain management doc did a nerve conduction study on my upper left side, giving me electrical stimulus in my left hand and then putting needles in my forearm and hand. It wasn't pleasant, but 24 hours later, my whole body hurt and felt cold, and that is the only thing that could have triggered it. I hurt for about 48 hours. I do have an 18-month-old boy who keeps me quite busy and physically active, so as soon as I could, I went back to normal activity, but now, every time I do something that would normally make my hip sore (like pushing a shopping cart through a store), it makes my legs go numb. I held my son as he fell asleep today, and it made my arms go numb.

My question is, after all this time, and all of these tests, what else is left other than fibromyalgia? Can anyone suggest something else that it might be?
Hello, I am new and just made my first post and am going through many questions my self. I was tested for Lyme, Lupus, B12 and Vitamin D deficinces. Now it is down to MS or Fibro. I had an MRI which showed clear except for an enlarged artery. A spinal tap may be needed. I get a ton of numbness also so I am wondering if you have been tested for any of these things? From what I understand a dx is pretty hard to get and at times take years and can be misdiagnosed so please do not give up hope and find a Dr you are totally comfortable with:) I wish you all the best and please keep me updated!
Hi Jam123,

Thanks for answering my question. I have been tested for Vitamin D and MS, and I know they did some other blood tests to rule out things during the MS testing. I haven't had a spinal tap, but I'm going in for another MRI of the brain on Tuesday. It seems impossible to think I'd find a doctor that I'm comfortable with. It seems like none of them want to hear all the symptoms, and I feel like if I shared them all, they'd think I was making it all up. :( Thanks for your encouragement, though. I hope you find out something soon.
Please forgive me, but.....have you seen a Rumatolagist? Wouldn't hurt. Pardon the pun. My gosh! You have your hands full my fibro friend.! 4 kids! That would alone bring o. So many things. Here's what you need to do. Find place for kids to go for 8 hrs, or maybe overnight. Tell your hubbies you have a surprize for him, while kids are gone you go pick up your favorite take out. Rent a movie you iboth like. (Kids * food* movie*) Now draw yourself a calgon bath, light couple candles . Put on some relaxing music. When he arrives great him, well, you take it from.there. Now watch your movie, turn off all distractions. No need for a Dr.s rx. Take when needed .

In all seriousness My heart and prayers are with you.
Thank you, moe1959. I appreciate your prayers.
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