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Ataxia Support Network

Well, this is me


#1

Hi everyone. Thank You for letting me in. I am so frustrated I don’t know where to begin.
I was diagnosed with Fibromyalgia in 2010. In 2016 I developed sudden problems with flexing my feet. First in one foot, then half a year later the other. It could flex once and then the movement stopped and the food just made weird spasms. Half a year later it hit my right leg. Then I had problems in my arms but not as bad as the feet, and finally in 2018 it hit the muscles around my mouth. I am a single mom 45 years old and I have used an electric wheelchair to get around with my kids, but have been able to walk for short distances. Since February 2018 the symptoms have disappeared and I’m almost back to normal now, but really struggle mentally with all of this.

We have a doctor in Denmark who earns bucks of Danish health care. He gives all patients, where doctors cannot find a cause for their troubles, a diagnosis that he invented called Bodily Distress (it has a Danish name). I have been examined by neurologists and they all come up with the explanation that it is mental. This makes me so sad and frustrated and I don’t know what to think.

I have elevated CK 450 and had an EMG that showed minor changes. Doctors can’t explain this and say it is not relevant.

I get money from the government while they are trying to get me back to work. I haven’t been able to work since 2013. I have no idea what my life will be like and how to support my family. I’m a single mom.


#2

:blush: Hi, and welcome. I’m so sorry you find yourself in this situation. But I’m just wondering, have you been diagnosed with Cerebellar Ataxia, or suspect you may have it :thinking:

There are basically 3 ways to determine whether someone has Cerebellar Ataxia. 1) An MRI which shows Cerebellar Atrophy. 2) A blood test which can link to a specific type. 3) Diagnosis by a Neurologist who actually specialises in the condition, and is experienced enough to confirm diagnosis based on symptoms.

Many of us here have trodden a well worn path searching for answers to frustratingly challenging symptoms. It’s a well known fact that Neurological conditions can be notoriously difficult to diagnose, and often it takes an expert in a specific condition to pinpoint the problem. But as we all know, getting to see the appropriate person isn’t easy.

If you haven’t been diagnosed with Ataxia, but strongly suspect this may be the case, make an appointment with a Neurologist who specialises in the condition :slightly_smiling_face: xB


#3

Hi,
I have not been diagnosed with Ataxia, but I have seen YouTube videos and that is exactly what my motoric problems look like. I have heard of an Ataxia condition that comes and goes but the neurologists says it is the way my brain sends signals and hence not a physical condition. I’m stuck in a limbo between physical and psychological as You can see. But doctors agree that I am very disabled physically and have been even more than I am now.

I have reached the end of the Danish health care system, so there is really nothing more I can do. As You say it is a lot about who You get to see as a patient, but there are no more places I can go to get this checked out unless I pay myself, and I don’t have that kind of money.

Cheers
Charlotte


#4

Have you ever been checked for a Gluten sensitivity? It can cause neurological conditions if it is not checked.


#5

:thinking: Balance problems that ‘come and go’ could possibly be linked to an Episodic type of Ataxia, but unfortunately it would take an expert Neurologist to arrive at that diagnosis. If ‘it’s the way your brain sends signals’ then surely the cause is Neurological. And, that is very far from it being a ‘mental problem’ :expressionless: So many Neurological conditions are known to ‘overlap’ with symptoms, but when you’ve seen several Neurologists it’s to be hoped one of them would have had a ‘lightbulb’ moment :thinking: Personally, I know only too well what it feels like to be on the receiving end of a wrong diagnosis, I’m so sorry, you seem to up against a brick wall unless someone can suggest anything else :smirk: xB


#6

Hey Charlotte,
Welcome to Ben’s Friends. Ohh man, do I know that frustration all too well and I am very sorry to say it is all too common. When a person has a rare condition that is difficult to diagnose it can often be a case of ‘diagnosis by elimination’ ie 'if the test for ‘x’ is negative and the test for ‘y’ is negative, then it must be ‘z’. And often dr’s label ‘z’ as being a psychological issue when they can’t or are unable to give a confirmed diagnosis, which to say ‘is disappointing’ is an understatement. I say this from personal experience.

For many years (20+) prior to a confirmed diagnosis, I had been telling dr’s there was an issue, they couldn’t find one and it was all labelled psychosomatic. I was having all sorts of issues from balance problems to odd sensations (tingles, spasms) to temperature regulation issues to heart irregularities. The medicos told me ‘there’s nothing wrong’ and tried me on every medication possible. It wasn’t until I had a major episode that they investigated further and found I had a nasty growing in my head. “Ohh look what we found…” as if it was all new. I was so angry and frustrated.

Since the first actual confirmed diagnosis, 22 yrs ago, I have had 6 neurosurgeries, each has been to ‘fix’ things. It hasn’t, and yet still today that initial psych diagnosis follows me everywhere, like “Ohh you have a psych history, well, that’s what it is…” Now I no longer inform medicos of the former psych diagnosis as I believe it taints there perception before they even start and I doubt (had the dr’s investigated properly in the first instance) that the psych diagnosis was appropriate. But in saying that their diagnosis still haunts me today.
I must agree with Beryl_Park in regard to the ‘overlap’ and ‘brick wall’. I have balance issues, but have not been diagnosed with Ataxia, I have sensory issues but have not been diagnosed with Polyneuropathy. There are a few groups on Ben’s Friends which have many of the same symptoms as I, but none that line up exactly. Since having surgeries some dr’s say I now have a brain injury, which could account for me varying symptoms, but to be honest I’ve given up on the medicos ever having all of the answers, no matter how much they profess that they know it all. They all have differing opinions.

Please know that many of us have been up against that ‘brick wall’ ourselves, so you most definitely are not alone. Come talk to us as we know from experience and not just some university textbook. We don’t all fit into that textbook.

Merl from the Moderator Support Team