I had Togo from Orlando’s hospitals to the JAX Mayo Clinic to get properly diagnosed!
It is NOT VERY TRUE. It depends where you live. If you are in Britain, we have centres like Walton Centre, dedicated to all sorts of neuro conditions and specialised doctors are by and large very helpful.Here in Liverpool, personally my neurologist is monitoring me 2x a year…Nowadays more on my phone. Every bigger city has a uni hospital, eg. Liverpool has a state of art facillity Sir Sid Watkins Bldg.My neurologist straight away saw and reviewed my case as a straightforward ataxia sca 2, even recommending a genetic test to confirm his findings…It is perhaps more frustrating if somebody suffers from unclear origins of a neuro condition. Then yes.And as for a gp level, eg. ataxia charity sent me some details for my gp to famiiarse himself with the condition…
that must have cost you a fortune…We in Britain are sooooo fortunate. If I were to pay for each consultation, mri scan and the genetic test, I will have to remorgage my flat?This British system of NHS care is a god send…
Sleep tests now have wires that connect to a module so you can get up and walk around at night. Don’t accept senior men wake at night for bathroom. I did but after bladder training I don’t anymore. Was relatively easy.
Neurologists are not miracle workers. They need to specialise in Ataxia. Check out published Neurologist Elsdon Storey from Australia who treated hereditary ataxias.
He was my Neuro until he retired seeing patients due to Parkinsons.
I was originally diagnosed in 2007, by a neurologist in Maidstone, Kent here in the UK. I knew something was wrong 2 or 3 years earlier, but my Gp insisted I was fine. I persisted and eventually he referred me. Since the diagnosis I now see Paulo Giunti at Queens Square in London. She is excellent, but whilst obviously I would like a miracle cure rather I make the annual trip. To hopefully help research into others that might develop the condition. I know that there isn’t really anything that can be done for me apart from medication reviews or exercise plans/phsyio.
I use a walker outside now if I have to walk more than a very short distance because I’ve had numerous falls in the last 2 years and my knees are always seem to take the brunt of it. Luckily no breaks but plenty of swelling and bruises.
I’m at the stage now where I use everything I can for support inside and out and feel more safe pushing a supermarket trolley on shopping trips.
Anyway sorry to go on…
I’m with you re the supermarket trolley Martin…It’s got to the point where I actually look forward to the weekly shop, my mind seems freer and my gait is remarkably more fluid…
I live in Huddersfield W Yorkshire. I’d heard that there was something in Liverpool but I thought it had closed. Anyway, yes there are some good neurologists and my GP would happily refer me if I wanted - but as Martin says they’ll never cure me, and Beryl reminds us regularly of the research available. So I just have a general neurologist who specialises in epilepsy. He seems to think I have it when I’m pretty sure I don’t but that’s ok (I think) as I’d rather have him than nobody. My GP is also good (within her limitations as a non-specialist).
Changing subject, I also agree that the NHS is a gift beyond measure. We can thank TV for putting on ‘Call the Midwife’ for reminding us what would otherwise be - back street abortions.
2 things about doctors I’m sure of: They know how to order tests and they know how to bill. They don’t know how to figure out solutions or a definitive diagnosis. I have given up on the U.S. healthcare system. I would be living in a flop house if I spent what the doctors want me to buy in to. Doctors (and politicians) can kiss my @$$.
Now that is more like what I was thinking about. I live in UK and we don’t have the same medical system but the doctors sound much the same
I’m in Australia and we also have similar issues with neuro’s. Our public health service here is similar to what Obamacare was envisioned to be (if it was fully implemented) In really basic terms it’s free healthcare for all. Sure if you want private hospital care, you can purchase health insurance cover. But often it’s the same dr’s seeing both private and public patients, it’s just private patients have to pay.
As for the medicos, hmmmm, I have found that as much as they like to profess they have ALL of the knowledge, they don’t. They all work on the agreed theories of the brain and those theories are still being established. How each person’s brain works is very individual, so getting that ‘Definitive diagnosis’ can also be very individual. I’ve had lots of ‘Well, it could be…’ or ‘It might be…’ because they really don’t know for sure. I say all of this because I’ve seen numerous medicos from all sorts of fields and had more diagnosis than I can count on my fingers (and toes). I’ve trialled all of their treatments, all of their medications and all of their theories, but none of them can give me that definitive answer.
Some people may think I’m just bagging the dr’s but I think we, the patients, are as much to blame. We go to see these specialists expecting to get answers find solutions, then when they can’t give us those answers we doubt their knowledge. In some ways it would be nice if they admitted that they don’t know it all. But, in saying that, I had a Dr say to me one day 'Well, you have a brain condition… …what did you expect…? which I thought was a little blunt, even though he was just being honest.
So, I too have given up on getting that definitive answer. I have to manage all of this for me, not them. Don’t get me wrong here, I consult them when needed, I listen to their information and take their recommended advice. But at the end of the day only I know where I am at, symptom wise, and how to best manage for me.
Merl from the Modsupport Team
The downside of not having a diagnosis can be self medicating. Due to lack of help from Neurologists, people are sometimes so desperate that they attempt to better the situation themselves.
It’s never a good idea to mix medications, there’s always the chance of interaction, or even the possibility of making the situation worse.
And there are those who think Stem Cell Therapy is the answer. There is research ongoing but at the moment this is not a cure.
A doctor once said to me, “I wouldn’t be surprised about anything with you.” I took that as her admitting that she didn’t really know. So she is my doctor of choice. I know to expect some common sense.
No, stem cell therapy is not the answer now but I’m pretty sure that I hear a door opening. A thousand mile journey begins with the first step!
Back in late 2016 I started noticing things weren’t quite right. The first neurologist who wasn’t very good said,” Oh, you just have ataxia, here is a prescription, sometimes our nerves get jumbled up, take the medicine and let me know how it goes.’ The physician who read the MRI saw nothing on it, he stated. Needless to say I got a neurologist. To his credit he put me it touch with a specialist
. Fast forward to June 2018 a neurologist specializing in movement disorders (Parkinson’s, MS etc.) at UAB in Birmingham Alabama, within 3 minutes of looking at a November 2017 MRI, diagnosed me as having MSA. Until they find a cure or a miracle takes place all you can do is go to the gym, do things to slow the progression and laugh (at yourself).
I’m about to rely on a walker now and the cane is just a prop to not appear like I been drinking all day! I totally get the shopping cart as a walker; I do that too. It’s funny how all of us find little workarounds to make it. My physical therapist coined a new phrase called “furniture walking”, where we go from a piece of furniture as something to hold onto the next to move around without aids. I said yeah I do that.
Here’s to the challenge, keep going!!
I have been asking myself that same question, as to why it took so long to get diagnosed with ataxia in general. Out of 4 neurologists I’ve seen (main neuro, another one to rule out MS, neurosurgeon for syringomyelia consult and finally referred to another at movement disorders clinic) the one who actually diagnosed me with ataxia was the neurosurgeon’s assistant…a PA-C who knew right off the bat. He saw what was going on and asked me if I knew what ataxia was. That was the first I had heard of it. My symptoms had a name!
By far the most difficult response I received was from my main neurologist when I was first having a lot of trouble walking, was having vision issues, starting to slur my speech a lot and had tremors, he said, “Your brain MRI is normal. You don’t have MS–you’re fine.” I was stunned. All I wanted to know was…if this wasn’t MS, what was it? He shrugged his shoulders. Months later, I got help from the movement disorders neurologist who put me on Acetazolamide and it’s working well, thank goodness. We still don’t know what type yet but at least they now all agree that I have ataxia. That validation alone means the world to me. I think what is happening now with neurologists is that they are just so profoundly overwhelmed with their caseloads that they really don’t know what to do with us…and unfortunately it leads to a lot of misdiagnosis and delayed treatment for sure…
I don’t think that your experience is unusual although I am surprised that any competent neurologist couldn’t recognize Ataxia readily.
It took over two years to get my own diagnosis because I was dealing with general practitioners who might only see the illness once over the course of their practice. A lot also has to do with them not taking time for basic observations and tests. After a lot of futile testing, including a normal brain MRI, ordered by specialists other than neurologists I was in the clinic one day and a GP not associated with the practice happened to be visiting. He saw me walking across the lobby just by chance and said “you have Ataxia”. My GP then sent me to a neurologist who confirmed the diagnosis with a number of simple observational tests and questions. Over the course of an hour or more he observed my gait, checked my reflexes, checked my eye movements, my strength, my ability to hold a full glass of water without spilling any, questioned by frequency of urination and checked my hand to eye co-ordination. I had a sufficient number of problems in these areas for him to confirm the diagnosis.
If my GP or the ENT specialist I was initially referred to had conducted any of these simple observational tests or asked a few questions they might have referred me promptly to a neurologist.
I didn’t get a diagnosis until I saw a movement specialist! I saw three neurologists and an ENT and my family doctor before that! All the first neurologist did was read the MRI report I had. I could have done that! She misdiagnosed me with MSA!
My initial symptoms led to a diagnosis of Epilepsy…This can be linked to some types of ataxia, but it caused a prolonged delay in getting an accurate diagnosis.
I was lucky to be part of a large family with a long documented history of ataxia (from 1700s) already in a genetic study, so I was taken seriously right off the bat. Otherwise, I probably still would not be diagnosed. I am currently living on full disability, 16 years after I was first diagnosed at 28.
I largely ignore my treating neurologist and instead check in with the research people every few years. The research people don’t provide “care” for me and are not obligated to tell me anything at all, but the bits I have picked up from them, and from my ataxic family members, have kept me still active all these years.
I still jog sometimes. The old ladies I take yoga with don’t know there is anything wrong with me because I stay home on bad days. I do my own yard work. In fact, I have been thinking of installing railings along the inside of my backyard fence so I can do more and not worry about getting stuck outside when I tire out.