NeuroTalk Support Groups - New here & don't know where to start- symptoms numbness and tingling

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New here & don't know where to start- symptoms numbness and tingling

I hope I am posting in the right area as I don't really have a diagnosis yet. I'm a 44 yr old female in good health or so I thought. I have tingling and numbness in mostly a glove stocking distribution. My symptoms began last February. One day, my back felt like it was going to sleep. I had previously experienced some back pain after a long day of cleaning so I thought it could possibly be related to that. Within a few days, a had a really cool feeling in my calf muscle. This feeling came and went. As time went on, I started having tingling in my toes, feet and legs about up to my knee. I also began to have weird feelings in my hands. I went to the doctor in March thinking it could be a pinched nerve or something related to back pain from over doing it cleaning. The doctor did an x-ray (negative) and referred me for physical therapy. Eventually I had an MRI on my thoracic and lumbar spine. The MRI showed some degenerative changes at L4-L5, a slight bulge in that area and a small cyst at L5, I believe. My back pain seemed to come and go and over the summer I was even walking and running without pain. Then, I bent over one day to get a shoe and had some really bad pain. My numbness and tingling continued to progress and basically never subsided. In July, I had a steroid epidural injection. The PA I was seeing was still convinced that my numbness and tingling were related. My physical therapist was convinced that they were not related as it didn't explain the numbness in my hands and didn't radiate down my leg, but began from my toes up. He thought I should have my B-12 checked. In August, I had routine blood-work. It all came back normal, but they didn't check my B-12. I requested a nerve conduction test, which came back normal. I met with the PA last week to go over the result & he said the test proved that my numbness and tingling is not related to my back issues. I just had a B-12 test today and the result was normal according to the nurse. I asked for the number and she said it was 374, which is actually low according to some information I have read here and elsewhere. They have tried to get me in with two neurologist and have been unable to find someone to see me yet. The sensations I have are definitely not normal and I must find answers! I do not have any vision, motor or weakness issues. It is strictly these sensations of tingling and numbness in my body. I have thought about MS, small fiber neuropathy, and still a B-12 deficiency. Sorry if this is a jumbled mess. It's hard to condense about 8 months of trying to figure out what is wrong with me into a paragraph that makes sense. Any thoughts for me? Thanks for any help!

Sorry for the issues you are having, but welcome to the forum.

That B12 number does sound somewhat low, so it wouldn't hurt to supplement with some methylcobalamin.

As for the other symptoms, it certainly could be some form of PN, but could also have other causes (including MS, as you have mentioned.)

I would think that they would want to have MRI done on the brain and cervical spine - to look for any issues there.

After that, things get a little murkier - there's a whole boatload of other tests, but you may need to get hooked up with a good neuro to start moving down that road.

best of luck

Quote:

Originally Posted by bjs1228 (Post 1174418)

I hope I am posting in the right area as I don't really have a diagnosis yet. I'm a 44 yr old female in good health or so I thought. I have tingling and numbness in mostly a glove stocking distribution. My symptoms began last February. One day, my back felt like it was going to sleep. I had previously experienced some back pain after a long day of cleaning so I thought it could possibly be related to that. Within a few days, a had a really cool feeling in my calf muscle. This feeling came and went. As time went on, I started having tingling in my toes, feet and legs about up to my knee. I also began to have weird feelings in my hands. I went to the doctor in March thinking it could be a pinched nerve or something related to back pain from over doing it cleaning. The doctor did an x-ray (negative) and referred me for physical therapy. Eventually I had an MRI on my thoracic and lumbar spine. The MRI showed some degenerative changes at L4-L5, a slight bulge in that area and a small cyst at L5, I believe. My back pain seemed to come and go and over the summer I was even walking and running without pain. Then, I bent over one day to get a shoe and had some really bad pain. My numbness and tingling continued to progress and basically never subsided. In July, I had a steroid epidural injection. The PA I was seeing was still convinced that my numbness and tingling were related. My physical therapist was convinced that they were not related as it didn't explain the numbness in my hands and didn't radiate down my leg, but began from my toes up. He thought I should have my B-12 checked. In August, I had routine blood-work. It all came back normal, but they didn't check my B-12. I requested a nerve conduction test, which came back normal. I met with the PA last week to go over the result & he said the test proved that my numbness and tingling is not related to my back issues. I just had a B-12 test today and the result was normal according to the nurse. I asked for the number and she said it was 374, which is actually low according to some information I have read here and elsewhere. They have tried to get me in with two neurologist and have been unable to find someone to see me yet. The sensations I have are definitely not normal and I must find answers! I do not have any vision, motor o:hug: weakness issues. It is strictly these sensations of tingling and numbness in my body. I have thought about MS, small fiber neuropathy, and still a B-12 deficiency. Sorry if this is a jumbled mess. It's hard to condense about 8 months of trying to figure out what is wrong with me into a paragraph that makes sense. Any thoughts for me? Thanks for any help!

Hi Bjs1228, sorry to hear that you are suffering so much I do hope someone wil bw able to help you. I too am a newby here, just introduced myself last night, I suffer from tingling ( more like a cell phone vibrating) and numbness but only in the toes and balls of my feet. It happens more at night around 10ish. It has given me many sleepless nights. I have End Stage Kidney Failure and am on hemodialysis 4 hours three times a week. I am not diabetic as I hear that it's mostly people with diabetes who get this but I do have Sarcoidosis an autoimmune disease which the doctors think MAY HAVE! scarred & damaged my kidneys. My Vitamin B12 level was 774 in Aug last year. I too was looking to gets tips & advice from other member on dealing with this, please.:hug:

Hi BJS1228.
You make perfect sense to me!

My spine has similar issue in L4, L5 and although they may not be the cause of my sensations they are a contributor. I say that because I have been seeing a chiropractor who is working to alleviate those spinal issues and the burning in my low back and under my left thigh are pretty well gone. It hasn't really helped in the other areas.

An MRI of your cervical spine might be useful. They should order it based on your symptoms also being in your arms. I had an MRI of my cervical spine and I have a lot going on. The neurologist thought we may have found a cause but he ruled it out when he performed a simply test. He had me bend my head down and if my symptoms were triggered it could mean my cervical spine is the cause. Nothing was triggered.

Like other members I do recommend B12 supplementation. I hope you get an appointment with a neurologist soon and my suggestion is to do your research before you go. This forum has tons of information. If you have questions posts them or PM someone who seems to be having similar problems. This group has very kind, caring people who want to help.

Quote:

Originally Posted by wfseniors (Post 1174537)

I do have Sarcoidosis an autoimmune disease which the doctors think MAY HAVE! scarred & damaged my kidneys.

wfseniors: Sarcoidosis is known to cause small fiber neuropathy. (Do a simple google search and you will find much information on this.)