ria

@rianeufeld
Fibromyalgia, asthma, migraines, polymyalgia rheumatica, arthritis. Retired teacher. Have adult children, 7 grandchildren, 2 great grandchildren. Love to knit , crochet, quilt, garden, bake, share my faith in Jesus. Love to read, listen to classical music
Kris McElroy

What Makes a Good Neurologist vs. a Bad Neurologist

My journey with doctors has often felt like the online dating platforms swiping left or right after an appointment. I’d start with “Hi, my name is Kristian. I go by Kris. Nice to meet you”. If the response was “Kristina…” it was usually a swipe left by the end of the first visit. But, if the response was “Hi Kris, nice to meet you. How can I help you/what brings you in today?” then we proceeded with a swipe right on the neurologist journey. I’ve been seeing neurologists since I was 7 years old and the journey shows no sign of slowing down anytime soon. Finding a good neurologist is still, for me, a rare gift. When I was 7, a good neurologist was the one who could make me laugh and had a lollipop at the end of the visit. A bad neurologist was one where the visit was in a cold room, there were no jokes, no lollipops, and they didn’t talk to me much while examining me and running tests which made me tired and my body hurt more. As I got older, general neurology became more specialized and I knew the routine of the same tests being run over and over again. Sure, what was once thought cerebral palsy was taken off the table with the certainty of complex hereditary spastic paraplegia that then turned to the possibility of ALS, that then turned to spinocerebellar ataxia, then multiple sclerosis… and round and round. The diagnosis circle continued as tests showed there were neurological symptoms, motor neurons were affected, it was progressive, and had a genetic component. The key piece that continued to be missing time after time was a definitive clear diagnosis. But, in times of uncertainty and navigating the neurology of my body, the neurologist — good or bad — made all the difference, for better or worse. I’ll never forget the neurologist that changed my world. He acknowledged how long the journey had been, was realistic about finding/not finding clear answers, and educated me on my conditions and how to manage them while also having clear boundaries and expectations. He valued my voice, whether I was speaking, using my AAC devices, or writing — no matter how long it took. He saw me as a person — my interests, my fears, my stress and hesitations, and my desire to be active and hold onto what was important to me. He used my correct pronouns and spelled my name correctly in all spaces and reports. He talked to me with such compassion about treatment options, genetic testing, how to move forward, driving, physical therapy, using a walker and wheelchair, and my young onset dementia diagnosis due to neuromuscular disease while connecting me to great resources in the form of community support, cognitive therapy, speech therapy, and a neuropsychologist. Instead of reducing me, he helped empower me in some of the darkest, scariest times I faced medically. So, in my experience, the top 7 characteristics that make up a good neurologist include: Communicates to me in a way I can understand, without treating me as less than. Connects me to resources. Discusses the diagnosis route vs. the condition treatment/management route in terms of rare neurological conditions where testing and diagnosis are still limited. Treats me as a person first, always. Takes time and collaborates. Doesn’t run non-medically necessary tests and uses informed consent. Honest, board-certified, experienced, and first, does no harm. On the other side, the top 7 characteristics that make a bad neurologist are: Consistently spelling my name wrong; saying my name wrong and/or using the wrong pronoun. They don’t allow me to use my own voice or see my input as part of the treatment plan. They don’t offer any education on the conditions or what I’m experiencing or the medication they’re offering especially after asking. They never follow up or admit that they don’t know. They don’t engage with me about referrals they are making to make sure that they’re accessible to me. They don’t take a full history or do a thorough evaluation. They minimize my concerns or pass them off. For me the most important thing is to find a neurologist (or any doctor for that matter) with whom I can develop a good doctor-patient relationship, communicate openly,  and that is the right fit for me.

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I’m new here!

Hi, my name is hales75. I'm here because my fibromyalgia symptoms seem to be getting worse so I’m looking forward to learning from other fellow fibros!

#MightyTogether #Fibromyalgia

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An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence

Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.

I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.

On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.

The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.

Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.

Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.

I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.

I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.

I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.

The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!

I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.

Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.

My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.

I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.

The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver

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Disappearing Rash

A few days ago, I noticed a rash on my hands and arms. It ranges from skin colored to light pink, slightly raised, almost invisible, but I can usually feel it by running my fingers over it. It itches like crazy! I’ve been googling it, but coming up with absolutely nothing. I’m wondering if it might be fibromyalgia related? Has anyone else experienced something similar? I’m about to go get some itch cream for it, but don’t have the money for an extra doctor’s appointment, right now. Thanks!

#Fibromyalgia

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I promise if you only open your eyes to the goodness world, it is there! Regardless of how severe your pain is and this coming from a level 10

<p>I promise if you only open your eyes to the goodness world, it is there! Regardless of how severe your pain is and this coming from a level 10</p>
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What I Think When People Say God Wants to Heal My Illness

I am a Christian myself and I believe in the power of the almighty God. But when a Christian tells me, “God wants to heal you,” I am confused. Because if God wanted to heal me, he could, right? He is God. So obviously, he doesn’t wish for that right now. There were times when I was prayed over for healing, over and over again throughout the years to no avail. I was told that I didn’t have enough faith and that if I just mustered up enough faith to believe that God would heal me, he would. I believe God empathizes with my pain and doesn’t enjoy seeing me suffer, but He knows what is best and knows all the ways my illness has made me more whole and has helped me learn about the good and beautiful in ways that I couldn’t if I wasn’t sick. Saying that God wants to heal me tells me that God doesn’t value my illness. Always focusing on healing can make those with chronic illness feel that we aren’t good enough just the way we are, abilities and disabilities in all. Because of this, at times I have believed that I am not good enough with my illness. But I am enough and God believes that. I see my struggle with pain as a grace that God has given me. I once had a professor who I opened up to about my illnesses. She quickly responded, “Wow. God must have one heck of a story out there for you.” She believed that because of my illness, I was given a special opportunity to see the world from a new perspective and that I would do powerful and important things because of my suffering. It has taken time, but I believe her. I am more than my illness, but also my illness is a very important part of me — one that has shaped me and molded me into the person that I am. So please don’t discredit my life and my illness, because I am better for it. I believe the all-powerful-God doesn’t want to heal me and is choosing to allow this in my life. And although 10 percent of the time I am screaming at him for it, unable to understand why he could allow me to live with this pain, the other 90 percent of the time I get it — because I can’t imagine my life without my illness and without all that I have learned about myself and others from it.

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Can it still be arthritis if blood panel was negative?

Worsening joint pain since 20s. 45 years old, now, can barely get dressed some days.

I have MCAS, which gives me lots of flu-like symptoms daily, plus migraines, and did not do well with the popular mRNA therapy used world-wide last year. Docs told me no boosters, I reacted so badly, twice: 7 days of burning skin plus fever, migraine with aura and persistent ashtray taste in my mouth, unable to sleep, or move much.

Condition was improving in 2019, and nose-dived in 2021.

Had noticeable pain/numbness/loss of circulation in hands, and toes since my early 20s. My mom had it, too, so I thought it was "normal" and never mentioned it, using ice, heat, topical analgesics, and NSAIDs to cope. Changing from a mouse to a stylus helped the hands a lot, and I just knew there'd be bad days now and then.

This January "now and then" became every single day. Instead of pain that went away with warm water or heat, a burning screaming pain took residence in my thumbs, toes, hips, ankles, and sometimes my neck. Hot water did not help, and even the act of washing my hair became hard to do, my hands hurt. BUttoning shirts, putting on normal bras OR sports bras, pain, even pulling up yoga pants or underwear was painful. Changing clothes at all now can take a period where I have to brace myself before doing it.

Folding laundry is so bad I stopped. Cooking and kitchen stuff I am almost managing, save doing dishes no longer soothes things, but now it still hurts and I am dropping things. I got some "senior" aids to open cans, pop tops, and even a button fastener so I can dress for work (all my work clothes have buttons, can't afford a new wardrobe atm).

I can't easily get in to see my docs, and forgot to mention it at the allergist/immunologist, but mentioned it during my annual to my GP. She had a blood panel run looking for rheumatoid arthritis and other issues, and it all came back negative.

So... what now? Can this be another kind of arthritis? Why would it change so much? I feel like my levels of pain would make more sense for a 65-year-old, not a 45-year-old.

All my past times use my hands. I cannot paint, draw, crochet, knit, or sew much at all anymore. Even using a video game controller can hurt so bad I give up and scroll on my iPad, which is now too heavy to hold on bad days. I am trying everything I can think of. Braces at night to prevent injury in my sleep. Dandelion extract (helps a little), every NSAID under the sun.

I react to menthol and mint, so no Icy-Hot or many menthol-based products. I don't need chemical burns on top of this. I use Aspercreme, it dulls it a bit. My thumb is obviously very swollen most days. My toes feel like walking is going to break them.

Help?

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