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Pain, tingling and fatigue
Hi I have been to so many doctors/specialists for almost two years trying to find answers for my tingling, fatigue and pain. PCP, chiropractor, spine doctor, two rheumatologists, neurosurgeon, neurologist. Two years ago i had our last child after multiple miscarriages and then IVF, along with a difficult pregnancy and birth. Two months later i got horrible spasm like chest pain in the middle of the night while i was up feeding the baby. It was so bad i called 911, they took me in to get checked but my heart was fine. (I had preeclampsia with that last pregnancy so they did an overnight observation) i had had pains like that in the past but they did not last as long. After this issue i started having tingling in my mid back off and on when im doing an activity where im slightly leaning but also using my hands. i also developed more neck pain then usual and pain in my arms around my elbows (not necessarily my elbow joint) and also a face rash . I went to a chiropractor that didnt really help. My dermatologist checked my ANA which was a low positive titer and he said prob not lupus, rheumatologists also said not lupus because the rash didnt go in the folds of my nose. Next i went to the spine dr after my first MRI, he gave me a steroid shot to the beck, it helped my neck some and my arms tremendously however the tingling in my back actually flared from it. Once it wore off it all came back. I mostly feel the pain in my arms when i’m using them and my hands in conjunction, like carrying bags, lifting 8lb dumbells, using a shovel, drinking from cups etc. i’ve had two episodes of tingling in my hands early in the morning out of nowhere and one episode of finger fasculations on my non dominant hand. I had tingling in my feet a few times and my calves but that has stopped. My right leg buckles frequently way more than in he past. I’ve had tingling and numbness in my left thigh for years. Ive had issues using utensils at times when eating or shredding meat, my hands cramp up along the pinky sides on both hands. I can not text or write for long periods like more than 5-10min (been years for this but never saught a doctors opinion) I also have difficulty chewing certain things, my jaw muscles get tight.
I went to a neurosurgeon to see if he could fix my neck hoping that was the cause of my issues but he said my neck wasnt bad enough, but when looking at my MRI he said a white area on my spinal cord and thought maybe i had MS or something and sent me to a neurologist. Neurologist was not helpful at all, did not check my brain or order any additional testing. He saw my second mri which didn’t show the white area on my cord and wouldnt look at the original at all! His answer was treat my symptoms with no diagnosis like it was fibro but that it wasnt fibro…oh i also had a normal emg of my arms and left leg. Im at a loss and want to give up any hope of figuring this out. Has anyone has this experience? Sorry its all over the place I was trying to think of everything at once, I know i’ve missed some details.
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@cmccaffe81
I have experienced most everything you have been experiencing. Here is my journey that may tie to yours and some suggestions for things to explore. You must continue to advocate for yourself. Don’t let doctors and their egos make you question yourself and your symptoms. Many doctors will try to make it all about hormones, anxiety/depression, lack of sleep, etc. if you are a woman/mother. Women get discounted in healthcare by both men and women (their symptoms aren’t taken as seriously as men’s).
I have congenital severe cervical and lumbar spinal stenosis, DDD, spondylitis, etc. and have experienced tingling, pain, numbness in arms/legs, hands/feet. I have also had chest pain like a heart attack multiple times. I am a 54 year old female who experienced infertility for a while and after canceling IVF, I got pregnant naturally!
My health decline started after having my son at 40. I had postpartum depression and started to get pain in my right hip/buttock/right leg when my son was 1. I had an epidural for emergency C-section and not sure if that had any affect on my spinal cord/nerve roots (not sure if you had an epidural). I also had increasing symptoms including extreme fatigue and burning/pins and needles in my feet and numbness in my left calf.
Starting in 2017, my health was declining and after many specialists (neurologist, orthopedic doctor, neurosurgeon, rheumatologist, etc.), and a lot of time and money, etc. I was diagnosed with iron deficiency (iron panel needed) due to heavy menstrual cycles. I was also diagnosed with left ear hearing loss (neurosensory), idiopathic small fiber neuropathy (severe nerve damage diagnosed via skin punch biopsy at calf and upper thigh), thyroid autoantibodies, and L5/S1 radiculopathy.
In 2019, I worsened but neurologist wasn’t able to help with anything despite daily headaches, weakness, pain, difficulty walking, etc. I was sent to a spine pain center and was put on Duloxetine for nerve and spine pain plus given lumbar spine injections. My MRI showed cervical spinal cord flattening but the neurologist and spine center never said anything. Fast forward to December 2021 and I went to a new orthopedic spine specialist/surgeon and he immediately diagnosed me with cervical spondylitic myelopathy which was injuring my spinal cord at C5C6 which was affecting my walking (felt like I was wearing cement boots), head/neck pain, weakness and numbness in arms/legs and hands/feet. I was dropping things and my handwriting worsened over time. I also had difficulty controlling my bladder and had bladder urgency/frequency. I had ACDF surgery soon after since spinal cord injury is an urgent matter to address on my C5C6 and it helped with some of the symptoms. I never followed up with a neurologist but will on April 29. I have a new neurologist and I want updated EMGs, nerve conduction studies, MRN to map nerve health, neuropathy blood work panel, tilt table test (neurogenic orthostatic hypotension), a brain MRI (to rule out MS) and spinal tap (to rule out CIDP/MSA). My gallbladder stopped working (biliary dyskinesia) which can be tied to small fiber neuropathy (SFN)/autonomic nervous system. SFN/autonomic dysfunction can impact heart/lung/digestion system.
Having certain viruses in life can impact your nervous system (Epstein Barr tied to mononucleosis, Herpes viruses like cold sores, chickenpox or shingles, COVID, etc.). Many people don’t know they even have certain viruses unless they get tested. COVID vaccines have also affected people neurologically.
You may want to see if you can get a new neurologist who will take you seriously and fully test you for your neurological symptoms to determine if something can be done to preserve nerve health and relieve symptoms. The white spot or area on your MRI may mean you have some compression affecting your spinal cord signaling. It may be certain functions/motions or positions that aggravate your spinal cord/nerve roots. You may need a brain MRI to check if you have any changes. You should also consider asking for a full thyroid panel (TSH, T3, T4, TPO for autoantibodies) since you also had many miscarriages (I am so sorry you had so much loss…that alone is difficult and I’m sure it hurts your soul).
I pray you can get better doctors who validate you, listen and care to get to the bottom of your symptoms to help improve your quality of life. Don’t give up advocating for your health!
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4 Reactions@cmccaffe81
P.S. I meant to mention that I have fired several doctors who were treating me like I was a hypochondriac so don’t be afraid to do so. I knew something was really wrong and having my spinal cord being injured was not “in my head.”
Also, I take Alpha Lipoic Acid and Acetyl L Carnitine for nerve pain and use lidocaine nerve pain patches (like Salonpas brand the most) and capsaicin nerve pain creams. I am on Bupropion for chronic pain and depression. I am also on Levothyroxine now because I was finallly diagnosed for Hashimoto’s thyroiditis and hypothyroidism (had lobectomy surgery because I had a suspicious 2.5 cm nodule on my right lobe). I believe my thyroid played a role in my infertility and thyroid issues can reck havoc on many other organs/systems.
Good luck getting answers ASAP…I am hoping for the best care for you❣️
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2 ReactionsThank you so much! And yes it’s crazy to think we have to fire some doctors. Some are great and try to figure things out and then there are some who don’t want to waste their time on someone who isn’t visibly disabled. It’s beyond frustrating . Sorry you have been through it all!
I may try the ALA i just ordered some for my dad who had a lot of pain in his feet from diabetes
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2 ReactionsOmgosh you sound like me , so crazy! And yes I’ve told my husband what you said, the doctors will 100% listen to what he says and take him seriously with me im just bounced around when most if my symptoms started at the same time! Not a coincidence.
I may ask about the cervical spondylitic myelopathy , i have some spinal stenonis in my neck and normal wear and tear (literally) but no one seemed to think it was bad enough to cause my issues. I also had an epidural with my son, I asked if that could’ve done it and the spine dr and surgeon both said probably not..
So I asked about a brain mri and the neurologist said no and he also said no to the last Np i saw. I dont understand why i can’t. Its my money and my head! If i could go out and get one myself in this area i would have because i need to know its okay 🤦🏻♀️ especially since a surgeon and my Np both mentioned MS or something similar.
It isn’t right that i can’t use my arms with out pain, write with out my hand cramping , or shred chicken with out them cramping, or have constant neck pain and tingling in my back at 42 years old. Im healthy and not lazy it doesnt make sense
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2 Reactions@cmccaffe81
We do sound very similar. Change doctors if needed. You need them to really listen to your symptoms and treat you holistically. Do you have other options for neurologists/spine specialists in your area? Would you be able to get your primary doctor to do full thyroid, autoimmune, neuropathy and iron panels? Depending on the results, you would then know better which specialist to see. Many orthopedic doctors and neurosurgeons see degenerative changes on MRIs and some people have symptoms and some do not. They really need to hear your symptoms, especially those that are new for you. I think it is interesting that you have had a long period of nerve sensations in your left thigh. I wonder if you have some congenital reason for this or if you had some other change due to injury (pinched peripheral nerve root) or small fiber nerve damage. Your symptoms in your arms and hands definitely sound like it is tied to your cervical spine. Certain functional movements may compress or flatten your spinal cord impacting the signaling through your spinal cord to peripheral nerves controlling muscle movements and pain signals. A good orthopedic spine specialist should be able to help assess.
I’ve had iron checked recently and it was fine, they check my thyroid yearly, a bunch of autoimmune tests were done, ANA was pos 1:40 titer so low and i had it checked myself and it changed to 1:80 but the rheumatologist still wasn’t convinced, he checked for a lot though, only thing that came up positive was the lupus anticoagulant but that doesn’t mean i have lupus but could be the reason for my pregnancy losses. As far as neuropathy the spine doctor and surgeon didnt even mention it. I had an emg done on my two arms and left leg and it was normal. I’ll see another neurologist in the practice later on it takes forever to get appointments with actual doctors around here. I have a follow up with rheumatologist next week, we’ll see what he says, probably nothing though. Im hopefully getting a sleep study soon too if insurance approves to check for narcolepsy. Im sick of appointments! 😕
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2 ReactionsHello @cmccaffe81, welcome to Connect.
First off, I'm sorry you're going through such a rough time with a variety of symptoms. I understand and feel
for you. You struck me by talking about shredding chicken and how it affected you. It brought back early memories of my health changes when I was frustrated because I couldn't stir brownie mix.
Secondly, I hear you, and also brought my husband to some neurology appointments because he was spoken to differently than I was. Sad, but true.
Just to throw a different thought your way as you navigate further possibilities to rule out and look for answers - Central Sensitization Syndrome (CSS) is a chronic condition that more or less can be the culprit of chronic pain and hypersensitivities. Here's a video from Mayo Clinic's Dr. Sletten that explains further. It's worth a watch:
Dr. Christopher Sletten - Central Sensitization Syndrome:
Will you let me know if any parts of the video resonate with you? I do wish you the best!
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2 ReactionsMy MS started out similar to the symptoms you describe. I was diagnosed with Transverse Myelitis at Mayo Rochester. Its inflammation and demyelination of the spinal cord. It can progress to MS but not always. Usually diagnosed by MRI with contrast. Shows up as white spots on MRI. Do your research and find a doc in your area who understands TM. Good luck to you.
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2 ReactionsThank you 🙂 do you know if the lesions can go away after time? The photo i attached, a surgeon thought the spot i circled was demyelination but i got another mri months later and it didnt show the whitish area
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1 Reaction@cmccaffe81
Your MRI looks like you have some compression of your spinal cord around C2-C3. Do you have any pain, numbness, weakness in head, shoulders, neck, arms, hands or difficulty walking, with handwriting, dropping things, or controlling your bladder? The reason I ask is I was diagnosed with cervical spondylitic myelopathy at C5-C6 and had ACDF surgery to decompress my spinal cord. My spinal cord was being flattened due to spinal stenosis and degenerative disc disease and caused many symptoms below the spinal cord compression. Myelopathy is injury to your spinal cord. You should see an orthopedic spine specialist/surgeon for their opinion if you haven’t already. It is a serious issue that can cause paralysis if not addressed.