Hi, I was diagnosed with ataxia a few months ago and have found the whole process totally devastating. Not sure of the type I have yet, but I feel as if I’ve just been given this awful news and then just told in passing that there’s nothing that can done. My neurologist mentioned MSA as a possibility and then told me I should go and have a look at their website. Told me nothing about the condition or the differences between that and ataxia.
My symptoms have grown worse since the spring, not sure if that’s because of lock down or the condition itself progressing. One thing that is increasingly tiring and is getting me down is the constant feeling of nausea from the moment I wake up until some stage in the evening. I’ve also lost my appetite. Is this something that anyone experiences and is there anything I can take that will help?
Hi It’s possible that your nausea is linked to ataxia, from a balance point of view, even if your hearing tests are normal. And, this could be having a knock-on effect with your appetite. On the other hand it could be related to side effects of medication. Have you actually seen your GP about the nausea, to rule out anything else that could be causing it
It seems callous to say the least for Neurologist to tell you just to look at a website, when they don’t know if you have that particular condition. We all know how easy it is to panic when a suggestion has been made. Can you ask to be referred to one of the Specialised Ataxia Centres, I’ve been seen myself in London. That’s assuming your current Neurologist doesn’t actually specialise in ataxia.
You possibly already know that there are many, many types of ataxia and that it can be extremely difficult to diagnose. And, so many Neurological conditions have symptoms that appear to ‘overlap’ which complicates the process even further.
My own hearing tests proved to be normal, but I have BPPV (Benign Paroxysmal Posterior Vertigo). This doesn’t show up on a scan/MRI, it’s diagnosed based on symptoms and reactions to testing. I had a terrible reaction after the Tilt Table test, however MSA has never been suggested to me. My diagnosis remains Idiopathic, despite comprehensive testing, only one link was found with a mutant gene (SYNE1), but it wasn’t 100%.
You may have already had the following tests…
Copied from www.mayoclinic.com
Diagnosing multiple system atrophy (MSA) can be challenging. Certain signs and symptoms of MSA — such as muscle rigidity and unsteady gait — also occur with other disorders, such as Parkinson’s disease, making the diagnosis more difficult. The clinical examination, with various autonomic tests and imaging studies, can help your doctor determine whether the diagnosis is probable MSA or possible MSA.
As a result, some people are never properly diagnosed. However, doctors are increasingly aware of the disease and more likely to use physical examination and autonomic tests to determine if MSA is the most likely cause of your symptoms.
If your doctor suspects multiple system atrophy, he or she will obtain a medical history, perform a physical examination and possibly order blood tests. Brain imaging scans, such as an MRI, can show signs that may suggest MSA and also help determine if there are other causes that may be contributing to your symptoms.
You may receive a referral to a neurologist or other specialist for specific evaluations that can help in making the diagnosis.
Tilt table test
This test can help determine if you have a problem with blood pressure control. In this procedure, you’re placed on a motorized table and strapped in place. Then the table is tilted upward so that your body is positioned at a 70-degree angle.
During the test, your blood pressure and heart rate are monitored. The findings can document both the extent of blood pressure irregularities and whether they occur with a change in physical position.
Tests to assess autonomic functions
Doctors may order other tests to assess your body’s involuntary functions, including:
Blood pressure measurement, lying down and standing
A sweat test to evaluate perspiration
Tests to assess your bladder and bowel function
Electrocardiogram to track the electrical signals of your heart
If you have sleep irregularities, especially interrupted breathing or snoring, your doctor may recommend an evaluation in a sleep laboratory. This can help diagnose an underlying and treatable sleep disorder, such as sleep apnea.
I’ve had a couple of hearing tests in the past 2/3 years, the results have been quite good.
Before I was referred to neurology it was at first thought I had BPPV, for which I had Epley and Brandt Dorrof manoeuvres; but made no difference. I then underwent some tests where you sit in a chair that gets tilted whilst they pour jets of hot and cold water into your ears. It makes you very dizzy. This is normal. You have to wear an eye mask and they film you eye movements. I think it’s to check for problems with the vestibular system. All were normal. I also underwent an MRI on my brain and ear canals. These came back normal. I was then referred to neurology.
Whilst awaiting the neurology referral my balance got worse, so I went back to the GP and made him send me for a second MRI; this was nearly a year after the first scan. A couple of weeks after this I had my first appointment with the neurologist. He didn’t have access to the new scan so looked at the year old one, that I was told was clear. You could see cerebellar atrophy quite clearly. And he wasn’t sure if it showed a very feint line of the Pons. If there was one it was very slight. So god knows who decided it was clear.
I’ve now seen this neurologist twice and not long had a third telephone consultation. I have requested to see someone nearer who was listed as an Ataxia specialist on the list sent with all the Ataxia UK info so hopefully he’ll be more useful. The reason he mentioned MSA was after I told him that I think I have REM sleep disorder. I act out dreams, sometimes talk, shout, wave my arms around. More recently I’ve been having some trouble with my eyes. They feel really dry, slightly uncomfortable, and I find I have to blink a lot. Not sure if this is just dry eyes or something called blepharospasm. Which is uncontrollable blinking.
I haven’t seen the GP about the nausea yet. Just wondered if it’s something that’s common in Ataxia. I feel extremely dizzy and slightly sick all the time. I’m finding it quite distressing.
I’ve had a number of blood tests to check if it’s hereditary. They came back clear so there’s some additional tests to check for rarer conditions, but I’ll have to wait a few months for the results.
There are Medications you might find helpful…The following is copied from www.ataxia.org Medications for Ataxia Symptoms.
Sleep Disorders/Parasomnias (vivid dreams, nightmares, acting out dreams, sleepwalking): Clonazepam. Sleep apnea Dizziness/Vertigo: Acetazolamide (Diamox), 4-aminopyridine, Baclofen, Clonazepam, Flunarizine, Gabapentin (Neurontin), Meclizine, Memantine, Ondansetron (Zofran), Scopolamine (eg. Transderm Scop Patch for motion sickness)
symptoms must be evaluated with a sleep study (nocturnal polysomnogram) and treated with positive pressure airway support if indicated.
Despite having the Epley Manoeuvre several times, there was no improvement with BPPV. In fact on one occasion the sensation I experienced scared me so much that the Manoeuvre had to be aborted Thankfully, that, and the eye movements, were sufficient to make a diagnosis, and I didn’t have to go on to have the hot water test.
It doesn’t surprise me that your MRI result was ‘questionable’. I had a mammogram that was said to be clear, but within a short time I went on to have breast cancer. Later I found out there had been a white dot on the mammogram exactly where my cancer presented.
Family members have mentioned I sometimes call out in my sleep. I know I often have nightmares, and I’m aware I call out for help I’ve seen other posts about this sort of thing, and it’s mentioned on Medications for Ataxia Symptoms.
My eyes tend to get dry too, but I don’t experience excessive blinking. Although I have had another common ataxia symptom, double vision. That, along with Nystagmus, combined with poor balance, make life difficult. Various strengths of Prisms in my glasses failed to help double vision, so I went on to try a Botox injection into my eye, and finally Strabismus Surgery. The surgery gave miraculous results But unfortunately there’s nothing similar for Nystagmus.
It must be the last straw contending with almost constant nausea. It could well be associated with your ataxia, if so there are medications to try.
I have a review appointment myself in January, at the moment I don’t know whether it’ll be face-to-face or by telephone.
To try any of these medication do you think I should just go to my GP? Bearing in mind, I don’t believe he has any knowledge of ataxia. It’ll be like the blind leading the blind.
Does anyone ever have contact with their neurologist in between annual appointments? It seems so long. My symptoms seem to be progressing quite quickly and it’s likely that by the next appointment I’ll be in a far worse state.
One of the things that really concerns me about the MSA suggestion is the potential for sleep apnea and breathing issues. It keeps me awake at night worrying about it. How will I know if I have it or will I just not wake up?
I feel like I’m turning into the Catherine Tate character who screams with fright when the slightest thing makes her jump!
Sleep apnoea is when your breathing stops and starts while you sleep. The most common type is called obstructive sleep apnoea (OSA).
Check if you have sleep apnoea
Symptoms of sleep apnoea mainly happen while you sleep.
They include:
breathing stopping and starting
making gasping, snorting or choking noises
waking up a lot
loud snoring
During the day, you may also:
feel very tired
find it hard to concentrate
have mood swings
have a headache when you wake up
Information:
It can be hard to tell if you have sleep apnoea. It may help to ask someone to stay with you while you sleep so they can check for the symptoms.
Non-urgent advice: See a GP if:
You have any of the main symptoms of sleep apnoea:
your breathing stops and starts while you sleep
you make gasping, snorting or choking noises while you sleep
you always feel very tired during the day
If someone else has seen you have the symptoms, it can help to bring them with you.
Continuous positive airway pressure (CPAP) therapy is a common treatment for obstructive sleep apnea. A CPAP machine uses a hose and mask or nosepiece to deliver constant and steady air pressure. Common problems with CPAP include a leaky mask, trouble falling asleep, stuffy nose and a dry mouth. https://www.mayoclinic.org ›
If you have difficulties between appointments with your Neurologist, ring their Secretary and explain, it may be possible to get a call back.
I know from experience how little knowledge GPs can have, but it’s still worthwhile persevering, although it’s possible your GP might want to check with your Neurologist before prescribing medication.
Thanks for the info Beryl - it’s much appreciated. If the nausea continues I’ll consider going to my GP to try some meds.
As for the sleep apnea - I don’t usually wake up. Sometimes I wake early and go back to sleep. But I suspect I sometimes wake myself up by talking/ shouting/ thrashing around etc. I very rarely remember my dreams. Although a month ago I woke everyone in the house up as I screamed. I remembered the dream on that occasion - I also screamed in the dream. I don’t think I snore, unless I have a cold. I did used to snore, but think I stopped following weight loss.
So I’m probably panicking following the suggestion that I should consider MSA. Hopefully my new neurologist will be more helpful.
I’ve just read a post from someone who noticed relief from nausea by wearing one of these…
Product Description. The Sea-Band wrist band gives relief from the nausea associated with travel sickness and morning sickness by using acupressure. For travelling, the band …
dfirst thing first. ataxia is crap and depending if inherited, acquired, your neuro specialist needs shooting. It is progressive, yes, long termed, nobody knows anything, JUST STAY CLEAR OF ANY DEPRESSION as psyche healthy one is paramount. It can show itself in your walking, talking any motorics, even irregularities in breathing IN and OUT, can cause choking when eating food or drinking…Ataxia is all sorts BUT LIVEABLE,Life will never be the same JUST ACCEPT IT, with many alterations eg cleaning house…or just get a cleaner…Support medicine -vitamins, exercise daily, ask for physio and their assessment, eat healthily…I am on the beginning of mine sca2, not shaking visibly, using my walker…CHIN UP. there are worse illneses. Put your ataxia into perspective…I buried my hubby, moved a flat, travelled to Slovakia (my native country) went to support my bro who has recently become disabled as this is hereditary.And I amlucky, no kids.He has to inform his 2 sons they very likely INHERITED THE FAULTY GENE. “Happy days.”
I have no experience of nausea, but then again different type from you. Get it checked out -your stomach, quite right it may be caused by your ataxia as centre of your balance different…I cannot stop eating, healthy appetite.Speak to your gp…defo genetic blood test willlll confirm the type…(only hereditary) as newly acquired is different.
So many terms and tests which I am Unfamiliar with. ladybird mentioned “ataxia is crap JUST STAY CLEAR OF ANY DEPRESSION”. I have never experienced nausea so I cant’ relate to Jingle1967 in that respect. The isolation i feel from this condition is acute. Feelings of being a burden to family in the future. and not able to properly do what used to be simple tasks. ie. At the grocery store today opening those little plastic baggy’s from the roller to put the produce in gave me fits at each vegetable I was shopping for. Is there supplements to improve fine motor skills and general balance when standing? I am thankful to read your stories and experiences as it helps to see others who struggle with this.
I suspect the majority of us have similar feelings Brandon. We have to remember we are loved, and would care for other family members if the positions were reversed. But this can often be hard to keep in mind, or give much comfort.
Some people place a lot of faith in supplements, such as CoQ10 …this can be especially helpful if you are actually diagnosed deficient. Although it’s unlikely to have any effect on fine motor skills.
Decreased Dexterity
Parkinson’s disease, with its tremors, freezing, and stiffness, is not the only neurologic condition that can cause hand and finger difficulties like Schuetz’s. For people with essential tremor, the shaking worsens with activity. Those with multiple sclerosis (MS) often experience lack of coordination and hand weakness. Dystonia, a movement disorder that causes uncontrollable muscle contractions, can result in twisted posture and cramping, which can affect hand dexterity. Neuropathies may cause numbness and weakness. And about eight out of 10 strokesurvivors experience weakness on one side of the body, including the hand, according to a 2014 study in the Journal of Neuroengineering and Rehabilitation .
For people with MS, trouble with dexterity can happen at any stage of the disease, says Michael J. Olek, DO, associate professor of neurology at the Touro University Nevada College of Osteopathic Medicine in Henderson, NV. “Patients may have trouble with handwriting, using keyboards, and preparing meals.”
Dearth of Studies
Research on how to improve fine motor skills affected by neurologic disorders is minimal, especially compared with research on aerobic exercise, says Lisa M. Shulman, MD, FAAN, distinguished professor in Parkinson’s disease and movement disorders at the University of Maryland School of Medicine.
Patients often worry more about improving their walking and balance and less about improving dexterity, Dr. Shulman says. “I think that’s because there are many workarounds for weak hands.” For example, people with poor fine motor skills can buy clothing with fewer buttons and zippers and shoes with easy fasteners, she says. They can also pick up prepared meals so they don’t have to cook.
Still, it’s important to focus on dexterity, Dr. Shulman says. She and patients like Schuetz offer the following advice for retaining dexterity or adjusting to its loss.
8 Ways To Address Dexterity
Talk to your doctor. Patients are more likely to tell their doctors about problems with walking than loss of dexterity, says Dr. Shulman. “What I’ve observed is that patients who exercise are almost always using their larger muscles, especially in the lower body, when using a treadmill or stationary bike, which preserves lower body function. Meanwhile, their fine motor dexterity disproportionately worsens.” She encourages all patients to inform their neurologists and health care team about any loss of fine motor skills and ask for help in improving and maintaining function.
Work with an occupational therapist. Physical therapy and speech therapy are more commonly part of a treatment plan than occupational therapy, says Dr. Shulman. “It’s important that neurologists encourage more patients to engage in occupational therapy.” It helps enhance independence, productivity, and safety in all activities related to personal care, leisure, and employment, says Kathy Zackowski, PhD, OTR, senior director of patient management, care, and rehabilitation research at the National Multiple Sclerosis Society.
Consider writing aids. For many people, the simple task of signing a check or restaurant bill or writing a to-do list becomes problematic. To make writing easier, use a pen grip or fatter pens, advises Rick Schrader, 64, a former software salesman in Herndon, VA, who has hereditary ATTR amyloidosis, a rare condition that affects his nerves and hand mobility. His hands get cold easily and lose sensation, but he still balances his business checkbooks every Saturday. “I don’t write fast anymore, but if I take my time I can still write clearly.”
Writing by Ruli From the Noun Project
Write mindfully. Writing quickly and unthinkingly may result in small, cramped handwriting and tightness in your hand, said Dr. Zackowski. “Try not to rush your writing, and switch to print instead of cursive. Using lined paper provides a guide and forces you to use bigger letters, which helps keep writing more legible.” She adds that using a computer keyboard may be easier if you don’t mind typing. And for those who are used to typing but now find it difficult, many keyboard modifications are available, including a key guard that helps users press the key they want without accidentally pressing other keys.
5. Use adaptive devices. For assistance when getting dressed, you can use reaching aids, button hooks, zipper pulls, Velcro shoe fasteners, or shoe horns, says Dr. Zackowski. To help with cooking and navigating the kitchen, she recommends tools such as nonskid placemats, utensils with oversized or angled handles, and rocking T knives, which cut food using a rocking motion. In the bathroom, Dr. Zackowski suggests getting a shower chair and a nonskid bath mat and installing grab bars. For grooming, Schrader uses an electric toothbrush and razor. Others may want to install a hands-free hairdryer on the wall or vanity.
6. Try different utensils. Poor dexterity can make eating with a fork difficult, says Kathy Villella, who has primary progressive MS. Whenever she eats in a restaurant, Villella orders food such as ravioli that is easy to pick up with a spoon. John Martin, 82, of Independence, MO, who was diagnosed with essential tremor in 2008, uses weighted spoons and knives and eats with his left hand because his right hand is more affected by tremors.
7. Keep fit. Staying active is the key to maintaining function and dexterity, says Carolee J. Winstein, PhD, PT, director of the motor behavior and neurorehabilitation laboratory at the University of Southern California in Los Angeles. “Work with your doctor and therapists to find a fitness and exercise plan that will help you maintain function in your hands and fingers.” Schuetz practices yoga, which he says helps him maintain strength and dexterity in his arms and hands.
8. Improve fine motor skills. To keep his fingers flexible and loose, Schuetz kneads therapy putty, a thick Play-Doh-like paste that varies in pliability from easy to hard. In addition to practicing yoga and kneading therapy putty, Schuetz continues to draw and paint. He says gripping the pencils and paintbrushes strengthens his fingers.
Schuetz also makes rings out of spoons, a hobby he started in the 1970s. Today, it provides another way to stay physically and creatively engaged. He hopes to move beyond rings into small bronze sculptures of yoga poses. “I want to bring together my two main interests—art and yoga—and keep my hands busy and happy.”
General balance…this is something that could benefit from specific exercise…
Balance retraining exercises (vestibular rehabilitation).
Therapy can help you compensate for imbalance, adapt to less balance and maintain physical activity. To prevent falls, your therapist might recommend a balance aid, such as a cane, and ways to reduce your risk of falls in your home.18 Jun 2020 https://www.mayoclinic.org › drc-2…
Ty
Beryl_Park, That’s a lot of info to post. I will look into the therapy putty. Thanks so much for all the effort and time you put into your contributions. I would love to post a picture to my profile but still use a flip phone since texting is worse than opening the vegetable baggy’s; It takes forever.Not computer savvy.
It’s possible that your nausea is linked to ataxia, from a balance point of view, even if your hearing tests are normal. And, this could be having a knock-on effect with your appetite. On the other hand it could be related to side effects of medication. Have you actually seen your GP about the nausea, to rule out anything else that could be causing it 
Thankfully, that, and the eye movements, were sufficient to make a diagnosis, and I didn’t have to go on to have the hot water test.
But unfortunately there’s nothing similar for Nystagmus.
I’ve just read a post from someone who noticed relief from nausea by wearing one of these…