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How common is it for radiologists to miss lesions in early MS?
I have been running the healthcare marathon for several years and I'm exhausted and frustrated!
3 years ago during a significant pain flair up I saw an OMM physician who diagnosed me with fibromyalgia. I started pilates to work on my core muscles and weak right side. I also started trying to pace my activities to prevent pain flairs (standing/walking for long periods, vacuuming and gardening always initiated a pain flair).
2 years ago over approximately 1 month period of time I developed trigeminal neuralgia, tinnitus, automatic dysfunction (bradycardia, dizziness, poor balance, fluctuating BP), mildly elevated liver enzymes, pancreatic dysfunction with steatorrhea, severe abdominal pain, paroxysmal cough, and worsening dumping syndrome with reactive hypoglycemia (gastric bypass in 2020). My "fibro pain" also increased and at times I had trouble walking due to pain and stiffness to my feet and ankles.
I have had multiple CT scans and MRIs as well as CTA and MRA. I was originally told the MRA was normal and I did not have trigeminal neuralgia (TN). However I did connect with a TN specialist who read the MRA and showed me where it was positive for TN. As a result I have been on Lyrica and Baclofen for pain control with some effectiveness.
In January I had an episode of hypertensive encephalopathy. I had an MRI without contrast at that time. The radiologists read it as a normal MRI. I recovered from my encephalopathy but now I'm experiencing severe pain to feet, ankles, hips, and lower back. I also have developed nerve pain to my legs that comes and goes and the quality of the pain changes. I also get numbness and tingling to my legs as well as my arms. My muscles are super tight even with the Baclofen- primarily my neck, hips, ankles, and feet. Some days my right leg is weak and I have difficulty with stairs. After a bad day I'll have muscle spasm to my hips and thighs that will keep me awake. I do have a history of RLS but this is different.
I have had a ton of labs. My autoimmune labs are negative with an occasional weakly positive ANA. My vitamin and minerals are normal except for a low zinc.
My TN neurologist has ordered a spinal MRI after I pushed him to look for MS. He says my brain MRI was read as normal but it seems to be taking an act of God to get the original images to him. (Currently saying a prayer the CD is on its way via snail mail)
While I think my symptoms could be MS the 2 MRIs that I've had over the past couple of years have been read as "negative ". Has anyone else been diagnosed with MS after been told their MRIs were normal?
Thank you!
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@brendanordstrom
I have had a similar journey as you and had brain MRI’s to rule out MS. Both negative for MS. I do think getting cervical and lumbar MRIs would be helpful to else if you have any MS lesions or spinal cord/disc/peripheral nerve issues. I have cervical/lumbar severe spinal stenosis, degenerative disc disease and small fiber neuropathy. Have you already had upper/lower EMGs, nerve conduction studies and small fiber neuropathy (SFN) skin punch biopsy? Have you ever talked with your neurologist about chronic inflammatory demyelinating polyradiculoneuropathy? Arachnoiditis? SFN affects your sensory and autonomic nervous systems. Have you ever had a HIDA scan to check your gallbladder function (if you still have yours)? My gallbladder stopped working and was causing abdominal pain (ejected only 7% bile when it should be a minimum of 35-40%).
@brendanordstrom
P.S. The acronym is CIDP for the chronic inflammatory demyelinating polyradiculoneuropathy if you want to research it.
Thank you for the information. I have not had am EMG but I'll ask about that after my MRI. I looked into CIDP and there are several symptoms that match mine. However, I have hyperreflexia of tendons and with CIDP you have hyporeflexia. But it's definitely something to look into if the MRI is negative.
I've already had my gall bladder out so that's one less thing. 🙂
It has been so frustrating that each physician works in a silo. My PCP tries his best and has been referring me to other specialties but they only look at their little area. And then when you throw in the insurance companies dictating what tests can be ordered . . . well, it's very frustrating as im sure you know.
I have to work so hard to advocate for myself. It really shouldn't be this hard.
Thanks again for the information. I'll definitely research them.
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4 ReactionsI'm so sorry to hear of your health struggles! I clicked on your question because there had been a time I wondered the same thing. For twelve years I have had episodes of complete leg paralysis and nerve issues/confirmed neuropathy that at times made my leg and arm movements jerky and less controlled. These episodes/flares were controlled with high dose steroids that would help me to recover and live mostly normally for periods of time within these twelve years. I also had episodes of severe hip joint pain, migraines, and Hashimotos hypothyroidism. etc. After seeing multiple specialists including three neurologists, physiatrists, an two endocrinologists, and a rheumatologist, I finally was hospitalized and saw a doctor who listened to all of my symptoms (not a specialist). He tested me for Celiac Disease and I was found to be off the chart. I had no digestive issues!!! My legs unfortunately are still not very good... I can walk but not for very far, though I am busy everyday with my young kiddos, so I am very much hoping that going gluten free will help with this, but it takes time, I am told when your body has been poisoned with gluten for so long. I am throwing this out there to you because it is unusual. My GI doctor told me to read "Celiac Disease: A Hidden Epidemic" written by Dr. Peter Green. It is only there that I discovered that my case, although unusual, has definitely been experienced by others and that there are over two-hundred symptoms of Celiac that have nothing to do with the digestive symptoms that are so often screened for. It is believed that over fifty percent of people who have Celiac Disease have not been diagnosed!! My neurologists and rheumatologist are in shock that this is believed to be the cause of my symptoms. I was just diagnosed this past January. Be careful.... If you suspect that you should have this blood test to screen for this, do not go gluten free before testing!! You need gluten in your system for your testing to be accurate. Your doctor should test you for Transglutaminase IGA in the least, (there are other Celiac panel markers). From there, if you are positive you have an upper endoscopy and biopsy to confirm that the villi have been flattened in your small intestine. There is so little that doctors understand about how having Celiac Disease damages the nervous system. If you feel inclined, try finding the fourth edition of Peter Green's book and see if you think it is worth while being tested (if you haven't been already). I hope you find answers and healing!
The healthcare community has also been concerned. I didn’t look for a specific test for a specific illness.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10545608/#:~:text=Among%20them%2C%20the%20percentage%20of,cases%20%5B3%2C%204%5D.
Thank you! This is a great article and very helpful.