hiya im new to this site my mum is on here and has been told she has sca4 she said to post on here if i ever needed anything.
i have had numbness and clumbsyness and alot of the symptoms for a while so as she got told i decided to find out if i have.
i went to see the neurologist and she sent me for a mri and electric shock testy thingy, brain scan came back fine but so did my mums and grandads
i went for the shock thing today and i am sooooooo angry i walked in the room and he looked at my notes and grinned and was liek so why do u think you have this, so had to explain the whole thing again after having to do it so many times before, anyways long story short he made me feel like shit, (sorry no other word is suitable) basically my nerves are fine its all in my head and the pain sleepyness not being able to talk falling over depression mood swings funny vision is not a sign of ataxia, now i keep dropping things and cant grip and cant feel things in my fingers n toes but no im fine !
i can understand that u should check all routs before making a dignosis but no need to be an arse about it.
i watch my grandad die and now my mums suffering i didnt need him being how he was when i had to explain the whole thing to him with that smug smile on his face.
is it all in my head ?
Hi - I’m glad that you are comfortable posting here as a non-caregiver without a diagnosis yet. You have a very unique perspective as both a relative of a person with ataxia and possibly being ataxic yourself.
You have every right to feel furious that a pain -or what a change in functioning that seems obvious to you- is being attributed to being all in your head.
I’m all for seeking out multiple opinions-second, third, etc.; the “it’s all in your head” can be quite common, unfortunately. Just FYI: there are some docs who will read your already-existing brain scans; however, some docs prefer to do their own.
You mentioned in your post that you had electric shock therapy or a test (?); unlike the EST as seen/read and popularized in movie/book like “One Flew Over The Coo-Coo’s Nest”, this can be an attempt to help alleviate depression - according to a friend, who’s mother had EST before dying of pancreatic cancer, unfortunately.
If this was for depression, you might mention this, too, to the doctor. Also, you probably want to consult a neuro who specializes in ataxia for your next opinion, mentioning that your mother has it, too.
Do you happen to know if it’s hereditary?
Your doctor will have more thorough questions, but these might be top-of-mind ones to start with.
For possible doctors who will read your already-existing brain scans, you might want to either do a search on here for previous discussions on the topic or start a different post.
No Danielle, it is deffo not all in your head, your symptoms sound very real to me. It was a long time before I got a diagnosis too and even then I found that expecting to hear a reason for me having spinal cerebral ataxia was probably expecting too much. You know what makes me angry beyond words, it is even having an incurable disease. It is not being able to run and play with my children, it is not being able to hold down a job, it is getting very tired so easily, it is that feeling of never being anchored properly to the ground, having to hold on to things wherever I go, falling all the time and the worst part of all is that it is not anybody's fault.
You just have to soldier on and keep trying to find an explanation for what is happening to you. I am so sorry you're having such a horrible time and good luck, I hope things get better.
Just want to say Hi Danielle and I sympathise with you. Not all in your head and terrible shame you have such experience especially with electric shocks which I presume were 'nerve conduction' tests. The technicians always tell me 'this wont hurt but may be uncomfortable'... to which I reply, I find them painful! Apparently they use these to monitor changes in progression. I have refused to have my progress monitored in this way.
My advice would be to keep to healthy lifestyle and exercise every day. If you can get appointment with speech therapist asap that would be good.
the technician giving you the 'shock test' is not a doctor and should not offer any opinion or ask you questions about your medical history....report him, his behavior is out of line......
Hi, like many of us. I've had to go to 6 different neurologists before they could figure me out. My only advantage was that my EMG/NVC studies were really abnormal.
Hi & Welcome,
I can’t tell you the number of times I have been so demeaned by doctors. I say forget all this guesswork & go find yourself a good geneticist. Have a gene test and be done with it. 2 weeks after a neurologist stupidly told me that all my tests were in the range of normal & i was not sick my gene test came back from the lab that the geneticist ordered saying I had SCA2. Fu** 'em all!
I agree with Patsy. Whether this is a technician who is administering a test prescribed by a doctor or a specialist doing it, the referral has been made and it’s not up to the snotty person doing the test to throw their weight around and make you feel bad. Sometimes technical people (including medical specialists) go into their fields because they have no people skills. I met one doctor who was that bad, mocking, condescending and belligerent, perhaps the twin of your guy. “Are you trying to pick a fight with me?” he sez. “I think you should just leave!” - this was after I tried very diplomatically to have him treat my husband with more respect and use layman’s language. We didn’t report the guy because it would have felt like retraumatizing. But I URGE you to report this guy. Some governing body needs to rein in this guy’s attitude and ego. You might be able to save the next person the same experience.
My best wishes to you.
OK, what I take from your post is that the person who made you feel furious and told you it was all in your head was the person administering the shock test, not your neurologist? And while possibly a specialist in administering shock tests, and interpreting the results of shock tests, he is not a neurologist, nor a specialist in ataxia? If so, you are quite right to be furious with him as he would be acting entirely outside his expertise to tell you it's all in your head.
When you go back to your neurologist, do tell her that if there is any interpretative or subjective component to the shock-test technician's report, then you would recommend these components be set aside, as you do not feel that he treated you with respect or dignity and suspect his personal bias could affect his ability to report objectively on your symptoms.
If the person administering the shock test was an ataxia specialist, who administered the test as part of his diagnosis, do still go back to your neurologist, and see what other options are available.
One more thing to bear in mind is that there are other possibilities. Your mother and grandfather both had SCA, so it's natural to look to that first as a likely cause for symptoms that could be caused by SCA. Yet even if you don't have SCA, it doesn't mean that your symptoms are all imaginary: I'm not a medical doctor, but I can easily imagine that there would be conditions with some symptoms similar to SCA. If SCA were ruled out, a good neurologist would have to consider other diagnoses before assuming your symptoms were psychosomatic. Last, if your symptoms are psychosomatic, that doesn't mean they're not real for you, or not serious; the good news would be that they'd be a whole lot more treatable than if they're the result of SCA.
Dear Danielle, No, this is not "all in your head". Somethings going on. Sounds as though you have a form of hereditary ataxia, due to your grandpa and mom having it, although that's just my assumption. If you're not seeing a neurologist who specializes in ataxia, you may want to make a change. Don't know why your MRI was normal, as I've always assumed that if one had ataxia, the cerebellum of the brain would show atrophy. Not sure what your "shock" testing was all about, as I had a nerve/muscle test (don't know what it's called) when my ataxia was diagnosed. My best to you..., ;o)
Danielle wow! do I ever feel for you. Stay mad it will motivate you. This guy was totally out of line. AND sadly this song and dance has been given to me too many times as well. still after 14 years. But not all docs are this stupid. You have to stick to your guns and realize it’s not all in your head and you need to find a doc who really know something about SCA. they are hard to find. The electric test you took likely was a nerve conduction test. if the idiot who gave it to you actually knew what he was doing it could be good news in that there may not be damage to the nerves in your hands and feet. I have periodic tingling but not from nerve damage. it took docs three years to figure out that I wasn’t imagining things. I had to find good docs which took a while. go to an Ataxia clinic. they are hard to find but it will give you the information and diagnosis you seek. If you are in the UK you may have to go to London to find one.
I sense your anger and find I am angry for you. Please know somewhere out there are people that pride themselves in good, quality care and will keep working to find the answers. You do have symptoms of ataxia as well as a family history, but that is not enough to base a diagnosis on. Find people living nearby and see if you can get the name of a good neurologist. If necessary, go to London or Edinborough and be seen by doctors at the medical school. You are a good “teaching patient” and that should help you be seen. More than anything be firm, advocate for yourself cand try to stay calm with them. It seems crappy to have to baby a doctor, but generally, they think they are just a touch below God. All the best.
My doctor treats me this way too. Sorry.
Hi there Danielle,
Maybe some of it is in you head because you grew up with it. Don't be in a rush to get yourself branded with ataxia because there is not much to do about it.. Maybe you have a very mild case?? I think it is encouraging that your MRI was normal. Still, get yourself checked out and resume your life with (as a previous responder said) good food, good excersise, limited or no alcohol,not to mention no recreational drugs. Pick one dr. and stick w him/her. They all say different things. One told me to stay seated; another told me to walk; one told me that he does not believe in physios; a physio in NYC told me that I can cure myself. A doctor (gynecologist) whose young son developed ataxia after brain surgery told me not to listen to doctors (in general) and to keep exercising and to keep strong. She hired a personal trainer for her son to re-teach him how to walk straight and not to zigzag.
Wow thanks for all the replies guys. I’ve had symptoms for a while noticing the lack of balance and stuff like that for years been depressed since I was 13 can’t seem to get rid of it. We only found out about my mums ataxia 3 months ago and my grandad 18 months ish. No offence to anyone but I don’t wanna have ataxia my MRI came back normal but so did my mums and granddads the electric conductivity thing came back normal same as there’s. It feels like a repeat of my mum everything is the same. We are two peas in a pod anyways. But yeah I was experiencing these things n thought it was just me as we never really spoke about the ataxia until one day we sat down n I was like Ooo this has been happening when she looked at me with that worries mum look.
I live in Cambridge so I could get to London if I needed to.
Thanks for the support guys. It really means a lot x
Before being diagnosed eleven years ago, I had never heard of ataxia either, JC! In reply to Danielle, I think it's a good decision that you're pursuing it, as you're experiencing things that aren't "normal" to you! It took me a year to see my doctor, as I couldn't believe something could be wrong with me, I had always been so active, athletic and healthy! Actually, thinking back, I had small symptoms starting about eight years starting before being diagnosed, eleven years ago. Also, the things that seems to help me the most is exercising for strength and balance, as well as stretching, as my muscles get so tight! As a rule I use a cane to get around, but go for pleasure walks with my Access Active Rollator...,did three miles recently. No, it wasn't easy, but I'm proud of myself! My neurologist always tells me to stay as active, safely, as possible (easy for him to say...,ha!)..., ;o)
My mri’s did not show deterioration but I definitely have SCA. Wish I knew why but I had an Uncle with the hereditary type of SCA. I had about 20 years+ before diagnosed n took letter n death certificate of uncle found a neuro n thank God someone finally gave me answers to all weird symptoms. I was not crazy!
Prior to all this, one time I was given a seizure med in IV while in hospital because neuro then didn’t know what to do with me. 10 minutes later I almost died before I got someone to come help me. I was thankful I was able to get help, if they had done that n I was not able I would be dead. Also recently new neuro had me try Diamox. Took one n in 10 minutes I had nausea n felt like going to throw up needless to say I will never let them give me any seizure med again. Been there done that.
Like others don’t stop cold turkey get neuro n get things straightened out.
Don't be discouraged, and anger is toxic. Keep researching until you find a neurologist who listens and understands. I guess the answer is patience and courage until you get a response that helps.
I have been diagnosed with light glutenataxia. I have your symptoms. I suggest you drop all grains from your diet because of the metabolic syndrome and gluten, I feel and move much better when i don't eat any grains, do the Paleo diet, execise, meditate, and rest a lot. It is also very important to remove as much stress as possible, including toxic people.
You can find many answers to these issues and others on Google.
Best wishes, Judith
Ataxia is often heriditary.
Hi everyone, Danielle is my daughter and I was furious when she rang me really upset. I told her to ask the good people on this site for advice as I knew what had happened was not right. Thank you to everyone who gave her some excellent advice and I also urge her to report this person. He was doing nerve conduction tests and had absolutely no right to speak to her the way he did, unfortunately we do encounter medical proffessionals who make us feel like we are going mad but for someone who wasnt a Dr to do it is out of order. Chin up Danielle, mum loves ya!