Play House? Please xo

General
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I’ve got to confess, many you have helped me through the worst of times. This has been my only place to feel understood and I haven’t even posted!

Lurking since 2015, because I was going to get better of course! I’ll learn, but this won’t be me.

I don’t remember that me as much now.

My world changed more abruptly then I read in many posts. No car accident or bad fall.

I need your help and advice. When I first heard I was being taken to Neurology from the ER I thoug Ok here we go, I’m going to get sorted out! Years later I understand Doctors better and more importantly understand that everyone has something to offer and I’m now interested in experience.

So because I’m already overwhelmed with Nystgmus and heart racing from FINALLY posting I’m going to ask if anyone is interested to play HOUSE with me. Dr House of course!

Let’s do this backwards. You ask a question, anything symptoms, age, family etc and I will answer.

Perhaps then I will get a leg up on this so called diagnosis I believe I deserve to have. I know it’s not all black and white. It I believe I’ve been neglected by doctors who don’t understand my severe discomfort every moment of every day and the effect it has on everyone.

Please ask a question it may lead someone else to another point that could open my eyes.

To begin

39 year old female

MRI shows significant atrophy to the Cerebellum

Terrible Vertigo then Nystagmus at night, positional Vertigo in bed specifically
Have slept in one position since October 2014 - weeks worth of trying to “push through” the dizziness

Walk with Cane so I don’t appear drunk as a mother of 3, my favorite place turned into my worst - the grocery store

Currently on no medication - I want it all but don’t feel confident in any doctors and am waiting on Mayo but it could be a long time as we have moved twice and my dr trail of info wasn’t ideal. Frustrating to say the least.

See I’m rambling. I should of written sooner. I apologize, but do feel many of you understand. I have a lot of knowledge so I’m ready to answer I just have such trouble explaining.

One last thing, haven’t come across anyone the same only similarities. I feel it’s important to really get to the bottom of the cause and as you know many just want to treat my symptoms and talk about how depressing this must be.

Play HOUSE with me?!

Louise

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Hey Louise,
OK, let’s play house :rofl: For a start welcome to the madhouse. I say that as a joke but when I started my journey ( a bit like you) it was all going to be short term, I was going to get better and move on, well, that was my plan. But after seeing more dr’s than I can count on my fingers and toes I’m more mad than ever. The lack of comprehension from the so called professionals drives me crazy. Something I have found via these boards is that this is pretty much normal. They all have their own opinions and when they don’t have the answers they blame the patient.
Like you I have found others with similar symptoms but nobody going through exactly the same scenarios and that can be frustrating in itself. Just having similar stories has been very much a relief for me, like “…phew, I’m not the only one…”

Merl from the Moderator Support Team

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I loved HOUSE!

That said, there are number of people within this community that have worn weighted vests to help with balance, this might be something non-invasive, non-doctor based for you try.

In the upper right hand corner of the “home” tab there is a magnifying glass, it’s how you can search all topics in the community. Put in “weighted vest” and a bunch of info from members comes up.

azurelle

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Thank you B! I’ve enjoyed so many of your posts over the years. How is that even possible, seems like only months.

I was given these possibilities EA2 / SCA6

My vertigo, nystagmus AND Ataxia confused many neurologists. Some aren’t interested in doing much more then medicating me.

I have FOUGHT through and truly struggled every minute of the day for years.

How does anyone have the energy to keep fighting for a true diagnosis. Is it that important or should I come to terms with this and mediate.

I have terrible positional Vertigo. One head position at night. I don’t think anyone truly knows how maddening that is!

My journey began after a 5 month low carb diet (Doctors have heard this but not really thought it through in my opinion)
Between jobs, selling home. Went to fix up house for a week. Ate what I wanted nothing terrible,but stress was definitely involved.

Got a TERRIBLE head cold, felt like the sinus infection I had been getting yearly but no mucus/blowing nose. Just a very foggy heavy head with headache.
Went to ER at the easier hospital.
CT scan showed sinus infection" home with amoxicillin

Why aren’t these antibiotics working.

Woke up suddenly 2 days into amoxicillin and Vertigo and Vomiting was my new world.
So sick couldn’t walk to stairs, ambulance came.

Every test imaginable. No one knows why.

Right upbeating nystagmus
MRI showed “significant atrophy to cerebellum”

Released after three weeks, couldn’t see well, needed a walker for 6 months, lost my old self just like that. Turned into an old woman in a month.

I also had shingles at 15
Mono Epstein Barr at 14

Generally healthy and very happy. I look a bit like Gal Gadot I’m told if you want to add a mental picture.

I suffer daily and try to not let it affect others in anyway. I keep hiding it bc if this is going to continue I have time for them to all feel pity. For now I’m getting more reclusive.

Thank you listening and caring. I have read nd cared for many on here over the last couple of years.

May you share your burdens and lighten your load xo

Louise

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Weighted Vest is now on my to get list!

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I have SCA-6 diagnosed by genetic testing. My sister has it too. SCA-6 does not show any symptoms until late 40’s or early to mid 50’s. Mine (SCA-6) was diagnosed at age 60, although the symptoms started at early 50’s. I went first with muscle cramps in my hand. The neurologist gave Botox injection for almost over a year, saying that it was 'writer’s cramp" or “dystonia”. It did not get better. Another neurologist wanted to give high doses of Solumedrol(Steroids) and/or infusion of Immunoglobulin. He did not know what he was treating. So I refused. The diagnosis was finally confirmed at Johns Hopkins using genetic testing. I am almost 67 now. It’s a progressive disease. Went through a trial of BHV-4157 without significant improvement. Only stretching and daily exercise seems to slow down the progression a little bit. It’s a challenge, but I can still walk. Thank god, every stairway is required to have railings. Thanks to ADA ( American Disability Act ). It’s not so in other third world countries.
Since there are only 2 pathways : 1) to give up and have “pitty party” and to deteriorate rapidly (both physically and mentally ) or 2) To keep hope while using daily exercise and read all the notes in the support group. And say " I am not Alone “. I have chosen #2. I have explained to my family and friends my awkwardness in walking and speech and everything that comes with it. " Why NOT me” keeps me going and try to do the best I can. Best of luck!

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“…My vertigo, nystagmus AND Ataxia confused many neurologists. Some aren’t interested in doing much more then medicating me…”

Ohh I’ve been there, with every tablet they can think of, injections of botox and pain beyond measure. None of it worked, but they cannot say that I have refused ANY treatment. I know from past experience that if I refuse they tend to use that as a justification for my continuing pain. Someone suggested hydrotherapy so I went and bought a hydrotherapy pool, it cost me thousands and it is nice to relax in but it doesn’t do much for my pain. I’ve been given all sorts of differing diagnosis, but in the end the diagnosis is just to be able to name it. Now I just say “I’m screwed” :rofl:

I too have found myself becoming more reclusive, it’s just easier. Trying to manage symptoms around others and the judgement that comes with it is a battle I can do without. Some people tell me I look like shit some days, I tell them they want to have a look from this side. What I look like is nothing compared to what I feel. Trying to get others to comprehend this reality is near on impossible. So I’ve given up on trying to explain it all. It’s easier just not explaining.
The real good thing about these sites I’ve found is that others ‘get it’ and that’s been a relief in itself. So don’t be a stranger, lighten your own load too.

Merl from the Moderator Support Team

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:slightly_smiling_face: Today, I hosted a monthly meeting of my local Ataxia Support Group. There were several no-shows, which I suspect was mainly due to the sudden on-set of glorious weather :sunglasses: We had a really nice, productive discussion. It allowed time for people to open up, share feelings and appreciate being listened to :slightly_smiling_face: Each person had a different type of ataxia but there was so much commonality and empathy :slightly_smiling_face: We all agreed it was beneficial to share experiences and knowledge we’d picked up along the way. There were plenty of laughs too :wink: We parted good friends, in good spirits :slightly_smiling_face: xB

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Louise, Seenie here, also from Moderator Support. We’re a team of 3 or 4 volunteers (depending on the day) and our job is to keep an eye on our network of thirty-some communities, and help moderators with whatever they need. This community is so lucky to have mod Beryl, who has been doing a fantastic job here for a long time. ModSupport never has much to do on livingwithataxia.org, so it’s a bit strange that here we are, all on one thread!

The beauty of Ben’s Friends, as you’ve discovered, is that people get it. All of it. Even people who don’t have ataxia get it: Merl and Azurelle and I don’t have Ataxia, but all of us do have our own rare disease/condition, and we do understand what it’s like when you are alone with this “thing”. Of all of the things that Ben’s Friends members say – and believe me, they say a lot – I think “It’s such a relief to discover that I’m not alone” is the most common.

So what’s brought the entire ModSupport team swooping in here? Well, your introductory post has got to be one of the most good-humoured, outgoing and (aside from the miserable reality of what you’re dealing with) fun and entertaining introductions ever. A positive attitude and determination to understand and learn, just as you have, goes a very long way towards coping with some of the nasties that fate has thrown at us.

We’re glad that you found us, signed up and joined, and we hope that you’re glad too. And although we’re not doctors (nor do we play them on the internet), and we don’t diagnose people here, we’re more than happy to “play house” with you.

All the best from all of us at Ben’s Friends.

Seenie

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When I feel down and think I was unfairly targeted, I read something like this and get a whole new perspective. https://www.cnn.com/2018/05/23/health/claire-wineland-transplant-evaluation/index.html

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I clicked on the link, and read Claire’s story. I sincerely hope a transplant comes soon and is successful for her. If any of my organs are healthy and suitable for transplant, I would like them to be beneficial to at least one other person.
One thing I certainly agreed on with Claire :slightly_smiling_face: She said ‘watching a TV show like Real Housewives helped’. Not that I’ve ever watched those particular shows but, anything that helps ‘get you out of your head’ even for a short while, is a bonus :slightly_smiling_face: xB

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Ok, I would love to play House with you. Have you noticed overwhelming fatigue. By the time I get through each day, I am literally exhausted. I know trying to balance and walk takes more energy, but this fatigue is overwhelming at time…

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Nancy, overwhelming ataxia fatigue leaves me marooned on a sofa for days at a time. It can be horrendous. Totally different from simple fatigue and tiredness. For me, it can often follow days where I’ve had the will and energy to actually exert myself and do something meaningful :smirk: It’s like payback time :face_with_raised_eyebrow: Yesterday, I had the urge to potter in the garden, nothing strenuous :wink: All I did was totter around snipping bits and pieces. But it was obviously taxing, because last night I was sound asleep for a couple hours, before going to bed and sleeping through :hushed: You’re right, just getting through a day doing next to nothing can be exhausting, so much concentration is needed, not just with balance but also mental focus. I’ve learned to go with flow, all that really helps is complete rest, and it does pass, eventually :slightly_smiling_face: xB

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I find that everything I do, no matter how little, leaves me very tired. My doctor gave me amantedine (though I may have misspelled it)which helps some.

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:slightly_smiling_face: It’s good to know it helps Linda. Thanks for passing that on :slightly_smiling_face: Yesterday I could have done with something myself, but after having had a good nights sleep I hope today is more productive :wink: xB

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Hi Louise78-
Welcome, I am 44yrs old, SCA6 - I have every symptom you do. Exactly the same.
I do not walk with a device, yet. I have also had shingles :frowning: My symptoms started with the typical “vertigo feeling” it never went away. I tried every exercise on the internet.
My balance came next, then the slurred speech. Finally I decided enough was enough and went to my PCP who referred me to a neurologist who sent me for an MRI. Then to a genetics counselor. Currently SCA6 has plagued my father, my twin sister and myself. Erin

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:blush: Hi Louise, :hushed:I’ve just remembered, I also had ‘Mono’ mid teens. And, it crosses my mind that this may have ‘put a spanner in the works’ :thinking: Like you, I’ve had exhaustive testing and ‘possiblities’ considered, but am still in limbo. For me, SCA6 was ruled out from the start. Recently, types of Episodic Ataxia were screened, and dismissed. So…:thinking: My Neurologist suggested trying Acetazolamide to combat Positional Vertigo, so I gave it a go… The trouble is, I can’t decide what works best. Forcing myself to lie in one position with my head raised, or the actual meds :face_with_raised_eyebrow: Last night I was careless, lay on the wrong side, then turned over quickly :woman_facepalming: Every day is like a ’lucky dip’ - I think you get the picture :wink:xB

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Go to you tube.com and watch “understanding Spoon Theory” by NewLife Community. https://www.youtube.com/c/jeneralhealth) explains the spoon theory. It is all about when you have chronic condition, you only have a limited number of things you can do each day (spoons). It helps so much to realize that I am not the only on who is extra fatigued …I see others and feel like I am missing out so much, but that is ok. Your reply was perfect. and made me feel so much better.

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:wink: I must be using coffee size spoons today, and running short. After repotting one small plant, I’m confined to a chair under a parasol, and it’s barely lunchtime :wink: xB

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At least you repotted a small plant!!! I find myself exhausted and I didn’t do anything at all. I read on this site that exercise and PT is invaluable for ataxia people, but I don’t have the energy to exercise and go to PT. I used to go to PT for an hour and lay on the couch the rest of the day. I’m glad the kids are grown, I don’t know how I would have coped when they were around.