Demylinating Sensorimotor Neuropathy vs./ or and Polyradiculopathy

Hi, Nemo1. 🙂

Thank you for your kind words. My faith is what is giving me strength and I try know to just take one day at a time. It can all be so overwhelming and depressing but my daily hope pulls me through.

My first investigation of my low back/hip/leg pain in 2011 took me from my primary care doctor to a rheumatologist then an orthopedic doctor. That is when I was diagnosed with severe congenital lumbar stenosis but the surgeon wanted to hold off on doing surgery.

Then, my symptoms got worse and the list expanded in 2017. I went from my primary doctor (who did cervical/lumbar MRIs), to a foot doctor, then an orthopedic doctor and neurosurgeon who referred me to a neurologist, then to a rheumatologist, etc. I was diagnosed with the iron deficiency (by my neurologist!), small fiber neuropathy, radiculopathy, hearing loss, and MS/lupus/RA was ruled out at the time. Not many answers or treatments. I started to take alpha Lipoic acid for the burning/tingling/numbness in my feet (never diagnosed with diabetes) which helped some. Other medications made it hard to work/function (muscle relaxers, etc.) so I was really not taking anything else for pain other than lidocaine patches/creams and ibuprofen (which was destroying my stomach and has caused gastritis/esophagitis). In hindsight, my thyroid Hashimoto’s diagnosis was missed by my rheumatologist (blood tests showed thyroid autoantibodies).

Symptoms continued to worsen and I fell/broke my foot while walking late 2018 (was dizzy/lost balance on a walking path). In 2019, my rheumatologist and neurologist did tons of testing but really no diagnoses/treatments (felt like a waste of time/money). My neurologist finally referred me to a spine pain center after my cervical MRI showed spinal cord flattening and EMG showed I had right arm radiculopthy. He NEVER said or recommended to me or the spine center to urgently address the cervical myelopathy (spinal cord injury…I didn’t know about this or understood the seriousness of it at the time)! When I got to the spine center late 2019, they recommended I see a psychologist for living with chronic pain, prescribed Cymbalta for nerve/osteoarthritis pain and physical therapy, and eventually recommended lumbar spine injections which I started to get in late 2020. No one focused on my cervical spine myelopathy!

Fast forward to late 2021 when my symptoms kept worsening, I sought out a new orthopedic doctor who immediately diagnosed me with cervical spondylitic myelopathy c5 c6 (causing many symptoms below the spinal cord injury) and recommended urgent surgery to prevent further damage and try to recover function of my bladder, ability to walk without feeling I was wearing cement boots, not dropping everything I tried to hold/carry, etc. There was some improvement after surgery early 2022.

I then shifted attention to residual symptoms and my lumbar spine (stenosis/spondylosis/DDD) Later in 2022, the ct scan for my cervical surgery showed I had a nodule and ultrasound and biopsy showed it was suspicious so my right lobe was removed (had micro-cancer and confirmed Hashimoto’s and caused hypothyroidism). I had breast implants removed in mid-2023 in case they were causing breast implant illness symptoms (saline implants both ruptured but the silicone liners have toxins in them). I was having autoimmune-like symptoms and “flares” but a new rheumatologist ruled out RA/lupus.

After all of this and losing my job in August 2023, I sank into a deep depression where I didn’t want to live anymore (wasn’t going to commit suicide but just felt like I wanted to give up). My primary doctor put me on new antidepressants and through many bad side effects, was able to get to better dosages that balanced brain chemistry (she put me in too high a dose of fluoxetine and bupropion combined and I tapered off to 20 mg fluoxetine every other day and 75 mg bupropion). Fluoxetine made me extremely apathetic and I may want to wean off this. I certainly do t need more apathy! 😉

Yesterday, I was just diagnosed with biliary dyskinesia (gallbladder only releasing 7% bile when it should be a minimum of 35%-40%). This seems tied to my central nervous system/neuropathy (gallbladder function/muscle/motility impacted). My new neurologist, that I am hoping to schedule with asap, will need to do an updated brain MRI for MS/white matter degeneration (myelopathy may have impacted my brain in addition to my spinal cord) and autonomic neuropathy affecting my heart, lungs, and digestive system (i.e., gallbladder). Every day I feel I am having a harder time standing up and walking. Everything seems to be slowing down/shutting down/weakening gradually.

Daily hope❣️

Nemo1,

Please get updated MRI of cervical spine ASAP by a top orthopedic spine surgeon/specialist to determine if you need surgery to address your symptoms and prevent further damage/injury. I would prioritize this now over neurologist, ENT, and gastroenterologist. You can always go to these other specialists after knowing what is going on structurally in your spine. It is highly recommended you avoid any neck manipulations (chiropractor/neck massage) until a spine surgeon assesses your cervical spine. You don’t want further damage and need to do everything you can to prevent falls which can worsen your cervical spine (I personally experienced this). Your cervical spine seems to be your root cause. Good luck❣️

Hi Daily Hope,

Oh my goodness!! What haven’t you experienced! You have been through so much.

I think adversity can make us either sink or swim. You are swimming! My faith helps me too. It surely carries me through troubling times.

Between surgeries and cancer, hypothyroid, deep depression plus…You have been getting your licks that is certain. One condition alone can be disabling.

I’ve had mental health challenges and they could be crippling but we survive. I am limited with what I can take for pain due to my liver. I have alpha 1 antitripsan deficiency which can cause liver and lung problems. I keep forgetting to ask the pulmonologist if the nodules are brought on by the deficiency or if its something else (being followed, like all the nodules in the body at 6 mo follow up for radiology exams for breast, lung, thyroid and liver (the liver is supposed to be followed by MRI annually and fibroscan in 6 months like the rest-I am due soon)…plus. With these short term follow ups, it brings on a degree of anxiety. Then I breathe a sigh of relief when they don’t find something sinister. My mother had a rare form of breast cancer at 74. She survived and is thriving. She is very strong too. I admire her ability to overcome obstacles.

So, at times I’m not sure which specialist handles which problem with so much overlapping and usually run a lot by my neurologist. She is a gem. Very helpful. I have a terrific primary. I recently saw him for the immediate trouble with waking up in spasm. I take the muscle relaxer and arthritis Tylenol (it lasts 8 hours) just before I go to sleep so it lasts. So far I slept through two nights in a row! Maybe I am on to something.

I hear you. Stomach acid can be damaging. I have acid reflux (GERD) that I think brought on the laryngopharyngeal reflux (LPR). I was on two doses of pantaprozole, one dose of famatodine and was supposed to take Gaviscon (to handle the two acids in the stomach) because I was having reflux so often. It’s helped though I passed on the Gaviscon. I’m hoping to reduce the pantaprozole due to long term side effects if I can maintain my acid control.

Since I’m getting an epidural next week. It can’t come soon enough. I’m really hopeful for pain relief.

A nutritionist appointment is scheduled for next week. Will see what kind of anti-inflammatory diet (might help “in theory” per pain management doctor…With attention to diabetes and cirrhosis she will put together that is actually effective and attainable. I’ve held back on pain meds (tylenol) until recently (due to liver.)

So much to consider.

Do they have to wait until your radiology exams before treating the gallbladder condition?

Hang in there. It sounds like they are working it out. We really do have to be our own advocate, and you do that so well!

Bless You!

💛

I will. Thank you.

💜

I think my gastroenterologist will recommend I have my gallbladder out since it is not working properly or sending enough bile to my small intestines to digest food (causes pain near my liver and could cause infection/inflammation due to trapped bile). I already had blood work, an endoscopy and ultrasound and the HIDA scan seems to confirm my gallbladder function disorder (which I believe is tied to autonomic dysfunction).

It is amazing how many problems can be caused by your CNS/PNS, especially if there is injury to the cervical spine/cord due to vertebral disk/joint degeneration. It makes sense that your body will have problems if your brain and body can’t communicate or coordinate well.

i too have degenerative joint disease throughout spine. I don’t really know what the radiologist means when they state “moderate DJD”. I’m going to ask for the neurologist to look at the cervical and thoracic and updated lumbosacral MRI’s. It’s a job to know about whats happening in the body. What I found particularly helpful to help point out problematic areas are upper and lower body dermatomes. Invaluable information.

Thank you Daily Hope.

💚

We are all here because we have complicated issus and your's is certainly up there. I wish some of us could be there for you to just make a cup of coffee when you need it. But we are there in spirit and wish you more than the best.

Thank you, @suetex! You made me smile and my heart full to know you and others care❣️

Yes, we do! You go and do....

Yikes...I went to the article and my eyes crossed! My overriding question is: What can we expect in the future due to the demyelination? All I get from my neurologist are vague non answers which makes me conclude that they don't know for sure and all the tests that they perform are being done to track our decline. Ugh. Anyone out there get answers about what to expect? I'd love to hear from you.