Accepting a New Diagnosis

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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neuropathy, positivity, husband, laughter, connecting, i am fine, self-care and MS, finding myself

I have long preached the merits of acceptance. In embracing my MS, I have mitigated much of the accompanying fear. This modus operandi has enabled me to live alongside my disease as opposed to clashing with it. While ideal, it is becoming increasingly difficult to follow my advice.

Two years ago, I had surgery for a fifth metatarsal fracture in my left foot. My surgeon made note of possible Raynaud’s syndrome after seeing slight discoloration. Several months ago, when my left foot began turning bluish-black, I assumed it was Raynaud’s. It was not until sharp, knife-like pain accompanied the growing discoloration that I called my doctor.

Comorbidity, the simultaneous presence of two chronic diseases or conditions, is common in those with multiple sclerosis. After weeks of tests, we have ruled out any concrete precursor to my symptoms. I was experiencing peripheral neuropathy. Neuropathy affects roughly 25% of those with multiple sclerosis. MS-related neuropathy occurs when there is damage to the myelin that surrounds nerves in the central nervous system. Damaged nerves send mixed signals to the brain. My damaged nerves are now firing without provocation. The widespread pain has been intense and unrelenting.

There is no cure. Because my neuropathy is due to multiple sclerosis, the best I can do is manage both my disease and the pain. In living well with MS, I can hopefully lessen the severity of the neuropathy. I am mad that I have to live with more pain. I am sad that so much of my energies are forcefully channeled into fighting it. But my faith is bigger than both fear and grief. I will continue to live a fulfilling life not despite but because of this disease.

I am reminded of a day 10 years ago. A day that changed my world forever. A day that called me to rise above the pain, beyond the fear, and thrive. As a result, I am living a life I never wanted but would never change. Little did I know that MS was more than a diagnosis. MS was an invitation to be the person I had always known I could be. I believe this diagnosis to be no different. With the sky as my limit, watch out. A new world awaits.

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Comments

Janette Murphy avatar

Janette Murphy

Jennifer, I commend your continued positivity under an avalanche of extra conditions to cope with, and also such constant pain. I appreciate your articles which help me to live beyond my diagnoses.
I too have comorbidities, namely Diabetes (of 45 years duration) and Coeliac Disease (of almost 20 years duration). I like to say I have the Holy Family of autoimmune diseases, in the hope that 3 will be my maximum. My MS is new to this mix, less than a year, so I am constantly reading of how others cope with more than just MS.
Thank you for your articles and positive insights. Stay well.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Janette,

Thank you so much for your kindness. It means so much that you can find hope and understanding on these pages.

Give yourself well-deserved grace and patience in navigating life with your comorbidities. While the MS is relatively new, I have confidence that you will continue to find your way.

Warmly,
Jenn

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RG avatar

RG

Jennifer - I also believe our mindset plays perhaps the biggest role in how we experience our lives and challenges, including MS. I worked hard to change my perspective to being grateful for beautiful things and people, angels that cross my path, moments of calm amid the storm of stimuli that overwhelms my MS.

I have a number of serious comorbidities, one hit me just like a sledgehammer --> Trigeminal Neuralgia. Relapses and "crap" always arrive Friday evenings. An entire weekend of waves crashing the side of my face and jaw until my neuro was back in the office.

As you are a Health Columnist, Jennifer, I wonder if you take prescription medications? If not, I highly encourage you to explore taking Neurontin (Gabapentin) for your peripheral neuropathy. Once you find the right level of medication and adjust to any side effects (perhaps sleepiness), you can live a life without that awful pain. I applaud your strength that you are able to be awake and mostly hide the agony you're experiencing but, think how much more you can enjoy the entirety of your life without using so much of your precious energy stomping down relentless pain.

Please consider it. My heart hurts for you as I know the pain.

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Fiona Barnhart avatar

Fiona Barnhart

I am so thankful I came across your post, for the last three years I have been experiencing extreme unrelenting nerve pain after surgery for 3 breaks in my fifth metatarsal of my right foot. I was sent to numerous specialists to try to find the cause of my Peripheral Neuropathy and was just diagnosed with MS. I sympathize with you because the pain is like nothing I have ever felt & nothing I have done has seemed to help in giving me any relief. I love your attitude and applaud you for speaking out, learning to live with our diagnosis is half the battle & your positivity is an inspiration to me. Good luck to you & I will be keeping you in my prayers.

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Sue Greene avatar

Sue Greene

Why would my MRI show signs of MS in brain after having this scan for headaches in 2015? It was shocking to my primary Dr but was never diagnosed with MS. I now have many immune system issues, dx'd with Mcas in 2019 Suffered since 2016 with 12 years skin itching/burning flushing, and other issues. Now I have SFN in feet and being tested for possibility of hands also. Have lots of pain all over but attributed it to spinal degeneration and vein damage in legs and Osteoarthrits.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Sue,

Thank you so much for commenting.

I am so sorry you are experiencing such diffuse pain. I encourage you to list your concerns then go over them with your physician.

I look forward to hearing back after they offer insight.

Warmly,
Jenn

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Jane F Pease avatar

Jane F Pease

I have MS and peripheral neuropathy. Today I can’t find any release from pain.. is there any hope for this condition. I appreciate some9ne to talk to

Reply
G T avatar

G T

I too have a long history of MS and Trigeminal Neuralgia . My Doctor finally found the correct dose of Carbamazepine and Baclofen to control this awful pain I must avoid cold food and drinks Avoid extreme cold or cover my face

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Paul Alan avatar

Paul Alan

Hi, I had peripheral nerve hyperexcitability which caused pain and vibrations in legs and feet, and also in the neck and face, I was put on pregabalin and then carbamazepine but it was not until I started taking cilantro / coriander that symptoms went down significantly. Pregabalin is a calcium channel blocker, carbamazepine is a sodium channel blocker and linalool which is a the main compound found in cilantro is a potassium channel opener. Put a heaped tablespoon of ground cilantro into a a pot with 500ml of water and heat up while stirring to just before boiling, then leave for a few hours, drain and drink the water.

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