Small Fiber Neuropathy, Sjogrens, Hashimoto's

Posted by penn @penn, Mar 17 6:46pm

Hello, I have a Neurologist, I'm looking for a Rumatologist is there any criteria? I saw 2 but they said they did not have to see me anymore. My Primay Care said her Patients have never experienced that. She gave a name I called and I have to wait months for an appointment. Hard time eating, jaw seems a bit stiff when eating and the side side effects, hands dropping things.
Thank You!

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@germangal

I was interested in your physical issues. I was literally reading my issues even shoulder curved forward dropping things. How/who informed you of the diagnosis name? I've been getting injections in my neck and lower back. I have many problems from autoimmune disorder.

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@germangirl
I get injections in my lumbar spine for spinal stenosis/DDD/spondylosis (L4L5 level). I never got injections in my neck. A MRI of your cervical spine and assessment of your symptoms and other neurological tests in office can help narrow down if your spinal cord is being affected/compressed/injured and causing your symptoms. I will be getting a thoracic MRI on Sunday to see if I have any issues at that level of my spine (never had this looked at before). I am seeing a new neurologist at the end of April for updated EMG/nerve conduction/nerve mapping testing and to check for MS. I have an appointment in May to see an orthopedic doctor for hip pain (never had MRI of pelvis/hip joints/sacrum) but experience significant pain/weakness in my buttocks/hips/legs and numbness in my left foot when I walk. Not sure if something is pinched. Was told I had radiculopathy in right arm and leg but my pain/numbeds now seems to have moved to my left hip/leg/foot.

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@becsbuddy

@jlnda I have had many MRI’s!! The report is always on the portal before my doctor even sees it. The radiologist may not have noted what the neurologist saw for 1 of several reasons: they didn’t see what the neuro saw; they called the neuro and discussed it; the neuro was just suggesting it so radiologist could double check. And the radiologists are THE experts in reading MRI’s.
Do you know if your neurologist has seen the films yet? Have you discussed it with them? Is there something in or on your hand that is bothering you?

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My neurosurgeon looked at my mri before seeing me.He called the radiologist before talking to me because he noted something not mentioned by the radiologist. The radiologist had to agree with the neurosurgeon and amend his report.
I trust the Dr over a radiologist. The Dr's are the ones who see the people and their problems . I've had to many MRI'S as well.
I really don't think that nerves are well understood because I don't see much help for nondiabetic nerve pain and the WHY!!!

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@jlnda

My neurosurgeon looked at my mri before seeing me.He called the radiologist before talking to me because he noted something not mentioned by the radiologist. The radiologist had to agree with the neurosurgeon and amend his report.
I trust the Dr over a radiologist. The Dr's are the ones who see the people and their problems . I've had to many MRI'S as well.
I really don't think that nerves are well understood because I don't see much help for nondiabetic nerve pain and the WHY!!!

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Hello @jlnda, From reading your previous posts it sounds like your nerve pain is in the hand you had surgery on or maybe both hands? I'm wondering if you have seen a hand specialist who specializes in hand disorders including nerve damage when you had the original surgery on your hand and if it might help to seek a second opinion with another hand specialist.

I'm not sure if it's a possibility but Mayo Clinic does have a hand clinic if it's an option for you. You can find more information on the hand clinic here - https://www.mayoclinic.org/departments-centers/hand-clinic/overview/ovc-20553124

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@johnbishop

Hello @jlnda, From reading your previous posts it sounds like your nerve pain is in the hand you had surgery on or maybe both hands? I'm wondering if you have seen a hand specialist who specializes in hand disorders including nerve damage when you had the original surgery on your hand and if it might help to seek a second opinion with another hand specialist.

I'm not sure if it's a possibility but Mayo Clinic does have a hand clinic if it's an option for you. You can find more information on the hand clinic here - https://www.mayoclinic.org/departments-centers/hand-clinic/overview/ovc-20553124

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Hi John, I saw 2 different hand drs. In 2017-2018 when my index finger right hand was developing a squeezing pins and needles burn. They offered nothing because I had passed an EMG on my arm. I understand they can’t test small fibers will a standard EMG. I had previous signs of raynauds in a couple fingertips and very sensitive to cold. The pain spread to my whole hand within a year. The raynauds white fingertip discoloration never showed again but the hand can be mottled with extreme sensitive to cold always there, with intractable pain. Another EMG last September did show damage in my elbow. So I had the carpal tunnel and cubital tunnel surgery in October. It’s not a fix!
I appreciate the recommendation because I see they use ultrasound.
I saw a video about ultrasound being used to diagnose carpal tunnel . Wish I’d seen it before the surgery.
I might be able to consider it for next winter when I make a trip south. I’ve been suffering for so long, what’s another 10 months.

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@dlydailyhope

@germangirl
I get injections in my lumbar spine for spinal stenosis/DDD/spondylosis (L4L5 level). I never got injections in my neck. A MRI of your cervical spine and assessment of your symptoms and other neurological tests in office can help narrow down if your spinal cord is being affected/compressed/injured and causing your symptoms. I will be getting a thoracic MRI on Sunday to see if I have any issues at that level of my spine (never had this looked at before). I am seeing a new neurologist at the end of April for updated EMG/nerve conduction/nerve mapping testing and to check for MS. I have an appointment in May to see an orthopedic doctor for hip pain (never had MRI of pelvis/hip joints/sacrum) but experience significant pain/weakness in my buttocks/hips/legs and numbness in my left foot when I walk. Not sure if something is pinched. Was told I had radiculopathy in right arm and leg but my pain/numbeds now seems to have moved to my left hip/leg/foot.

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Hello dlydaily,

Look into MR Neurogram, you will see what it looks for. Looks for damaged nerves but look it up, Mayo Clinic. John Bishop was so kind sending me a lot of information. I have S.F.N, Sojgren's, Hashimoto's.
My severe nerve pain started after hip surgery, Mayo Clinic, look up Hip surgery and S.F.N. wish I had known that, I would not have had the surgery. Important to know.

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@penn

Hello dlydaily,

Look into MR Neurogram, you will see what it looks for. Looks for damaged nerves but look it up, Mayo Clinic. John Bishop was so kind sending me a lot of information. I have S.F.N, Sojgren's, Hashimoto's.
My severe nerve pain started after hip surgery, Mayo Clinic, look up Hip surgery and S.F.N. wish I had known that, I would not have had the surgery. Important to know.

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@penn
I will definitely ask about the MR Neurogram tomorrow in addition to MRI of brain and spinal tap. I do believe our SFN causes so many symptoms and problems beyond what doctors fully understand. They really have a hard time diagnosing and treating their patients properly. I think my Hashimoto’s started after I was pregnant and had my son (at the age of 40; now 54). It seems to be when my health started to decline.

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@penn

Hello dlydaily,

Look into MR Neurogram, you will see what it looks for. Looks for damaged nerves but look it up, Mayo Clinic. John Bishop was so kind sending me a lot of information. I have S.F.N, Sojgren's, Hashimoto's.
My severe nerve pain started after hip surgery, Mayo Clinic, look up Hip surgery and S.F.N. wish I had known that, I would not have had the surgery. Important to know.

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@penn
Thank you also for the heads up on hip surgery. I certainly don’t want my SFN or bursitis to worsen further from what it is now!

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@dlydailyhope

@penn
I will definitely ask about the MR Neurogram tomorrow in addition to MRI of brain and spinal tap. I do believe our SFN causes so many symptoms and problems beyond what doctors fully understand. They really have a hard time diagnosing and treating their patients properly. I think my Hashimoto’s started after I was pregnant and had my son (at the age of 40; now 54). It seems to be when my health started to decline.

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@dlydailyhope, here is the post that I shared with @penn in another discussion with links to information on the MR Neurogram if you want to see it - https://connect.mayoclinic.org/comment/1035205/.

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@dlydailyhope

@penn
I will definitely ask about the MR Neurogram tomorrow in addition to MRI of brain and spinal tap. I do believe our SFN causes so many symptoms and problems beyond what doctors fully understand. They really have a hard time diagnosing and treating their patients properly. I think my Hashimoto’s started after I was pregnant and had my son (at the age of 40; now 54). It seems to be when my health started to decline.

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dlydailyhope,
My Hashimoto's started at 18, I'm now 75. It started when my face started to feel so hot, I touched it my lips, were so swollen, hives all over my body. For years in and out of the E.R, Around 98 I had a Hot Nodule soooo Thyroidectomy!! Found out I had Hashimoto's! Was sent to S. Carolina to a Dr. who specializes in it. Well it came from my thyroid. I was sent to a dr. that gave injections and it worked, the Hives were in remission until I took Cynbalta, hives again. More INJ. in remission for years now.
.

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@penn

dlydailyhope,
My Hashimoto's started at 18, I'm now 75. It started when my face started to feel so hot, I touched it my lips, were so swollen, hives all over my body. For years in and out of the E.R, Around 98 I had a Hot Nodule soooo Thyroidectomy!! Found out I had Hashimoto's! Was sent to S. Carolina to a Dr. who specializes in it. Well it came from my thyroid. I was sent to a dr. that gave injections and it worked, the Hives were in remission until I took Cynbalta, hives again. More INJ. in remission for years now.
.

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Could you explain what INF injections are? I have diabetes, low thyroid and SFN.

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