Overcoming the Loneliness and Isolation of Aggressive MS

Beth Ullah avatar

by Beth Ullah |

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aggressive MS | MS News Today | Stock photo of a woman in a ponytail burying her face in a large pillow, to show struggle or difficulty.

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“Hurricane MS,” which is how I refer to the aggressive nature of my MS progression, happened quickly and mercilessly. I am aware that my case is particularly unusual, given how aggressive its onset was. This is one of the reasons I feel a sense of purpose in sharing my story with others — I’ve experienced treatments and complications that others have not, or at least none that I could find at the time.

It was an incredibly lonely place to be. As I’ve learned, it’s much more difficult to advocate for yourself in the moment than it is to advocate for others.

I searched the social network Shift MS, MS charity websites, and other places on the internet to find answers and common ground, to little avail. There were even times my doctors had to confer and deliberate as to how to proceed since I was not an everyday case.

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Starting from the beginning, my first symptom was facial numbness and blurred vision. I was initially told it was probably a stroke, then a brain tumor. My scans were sent to specialists in London for consultation. It was a lonely time without my husband there, as he’d moved into our new home across the country while I finished my notice period at work.

I was prescribed dexamethasone and morphed overnight into a chipmunk. It hurt, but it did resolve my symptoms, which meant no further tests were done because I was “better.” In hindsight, the scientist within me who strives for answers should have pushed to find out the cause. What’s that saying? Hindsight is 20/20, after all. This was a major lesson in my self-advocacy and patient advocacy journey.

aggressive MS | Multiple Sclerosis News Today | The effects of dexamethasone are visible on Beth's face.

The effects of dexamethasone are visible on Beth’s face. (Photo by Beth Shorthouse-Ullah)

Not knowing what was wrong with me, coupled with moving somewhere new and interviewing for jobs, simply made me feel more isolated.

I still had the steroid “moon face” when I started my new job, which made me incredibly self-conscious because I didn’t know anyone and no one knew me. I felt it called my competency into question, which is less than desirable in a new workplace. Four months later, I was back in the hospital having tests done for what we now know was optic neuritis, which further added to the feeling of isolation.

Eventually, I was diagnosed with relapsing-remitting multiple sclerosis in 2016.

I was due to have Lemtrada (alemtuzumab) for my disease-modifying therapy, but screening surprisingly determined that I had latent tuberculosis. This delayed Lemtrada further, because I was required to have a three-month course of antibiotics — and that was after waiting for the neurology and respiratory teams to meet to come up with a plan.

I researched to try and make sense of the situation. I looked for others who had been through the same thing. I was looking for company, someone who knew how this felt. There was one lady on Shift MS who was three months behind me. She was the only one I encountered who had experienced something remotely similar. But being three months behind me, she had fewer answers than I did. I remember feeling so lost.

The fact is, I was then paralyzed before I could receive Lemtrada due to the delay. Of course, I understand the necessity for postponing the Lemtrada treatment. If tuberculosis would have been triggered by Lemtrada wiping out my immune system, it may have been life-threatening.

At the time, however, it was hard not to be bitter about this, especially when I couldn’t even roll over in bed or stand up, and I didn’t know if I’d ever get better.

When my paralyzing relapse didn’t respond to multiple courses of steroid treatment, plasmapheresis was recommended. While it made all the difference, I was again unable to find other patients who had encountered the same situation. At the time, there was not much evidence on the internet about the efficacy of plasmapheresis in situations like mine. I felt lost in the dark — literally, considering my optic neuritis was still affecting my vision.

It was scary to not have anyone to talk to about it, or who could offer comfort. The medical team was wonderful, but it wasn’t the same as hearing similar stories from other patients. From the smaller procedures — and I was no stranger to medical procedures by that point — such as having a central line inserted, to the more fundamental understanding that my blood was being removed from my body, cleaned, and put back in, I faced a whirlwind of emotions.

It is important to remember that these procedures were for my own good, no matter how traumatic they were and how lonesome I felt. This is why I want to share these stories. If any comfort and understanding from my patient experience can be offered so that others won’t feel as lonely and isolated as I did, then my day will be made, which has become my personal catchphrase.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Christopher avatar

Christopher

Hi Beth.

I have had similar experience though not the same symptoms or problems. I don’t want to drown you in a novel sized description of my MS journey, but I do very much understand your experience and feelings of loneliness.

I started out with balance problems and neuropathy. It took 18 months to get a diagnosis of RRMS. And that was after months of being told it was anxiety, being in bad shape, pinched nerves, and even alcoholism. What?! I had researched for hours every night after work and was pretty sure it was MS. The doctors wouldn’t listen, or argue and tell me to stop reading things on the internet (sorry, I thought research was important and YOUR job) and that I didn’t have a degree so I didn’t know what I was talking about—that’s a low blow. Eventually they said, “you know… maybe it could be MS." And after diagnosis I got a second opinion to be sure. It was definitely MS. Then years of all different drugs and therapies (about 9), and multiple hospitalizations with usually paralysis, and constant progression of disability without a rest. From wobbly walk to one cane, to two canes to a four wheeled walker, to a wheelchair to powerchair and then bed bound in a nursing facility all within 15 years. Talk about hurricanes… sheesh! All the while having to figure out almost everything myself, and not finding answers easily or at all. And when I found someone or something great that helped, it didn’t last. Also to add insult to injury, the doctors changed my ORIGINAL diagnosis three times! It now stands at primary progressive.

I try to help when and where I can, and I’m always available to talk to anyone who needs help, or just to talk to not feel so alone. I wish you the best, and I’m always here. I have a blog if anyone ever wants to get ahold of me: edgeofthedivingboard dot com.

Christopher

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Beth Ullah avatar

Beth Ullah

Thank you Christopher. I will check your blog out.
Thank you for sharing, it means a lot.
Honestly, I could write a book about my MS journey... this column alone I censored so much.
This column was raw and to the point. Yet my column page name 'Through the Looking Glass' is intended to inspire the hope and self awareness and positivity I've found as a result of this journey.
I hope they can help others.
Thank you for reading 🙂

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Stacey avatar

Stacey

Im dealing w/similar thing right now so I appreciate you sharing. Had recent relapse after having MS for over 8 yrs. First major relapse. Diagnosed w/optic neuritis in left eye/complete blindness in eye/multiple steroid infusions/tapers over 3 mnths that did nothing to restore vision & about to do plasmaperesis too. Hoping it works!

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Beth Ullah avatar

Beth Ullah

Hi Stacey,
If I can help more with what to expect or worries, please let me know. I'd happily help where I can
Beth

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Heather avatar

Heather

Hello! I just read your your article and I think you are so courageous and so awesome. I had a brain and cervical spine MRI. The radiologist thoroughly read the scan and wrote on his report that I had demyelination and presented as MS. My world fell apart. I cannot imagine how utterly lost you were, especially w tuberculosis also. I waited a couple of months to see a neurologist specializing in MS. He reviewed the scans and said he could see no myelinated legions and the radiologist had read the results incorrectly. I was so happy, however I wish I could help people who are faced with MS. I hope you will feel not so alone. MS is such a cruel disease. I’m glad you have doctors who are working with you. I want you to know that I love you and hope you will find a friend who can truly understand what you are/have been through. Thank you for writing the article. Heather

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Getty Bailey avatar

Getty Bailey

Thank you for your honesty. I find everyone is sugarcoating the truth and that is never helpful. I actually diagnosed myself and went to Dr. and laid out my opinion and then asked for an MRI and a spinal tap knowing that those two diagnostic tests will give you the answer. Unfortunately the answer was primary progressive M S. That was in the year 2000. We have to be able to stand up for ourselves and be as knowledgeable as we can. If your doctor doesn't listen to you, find a new one. We all deserve the best we can find. Stay brave Heather and know that there are lots of people out there that appreciate your story and your opinion.

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