I was wondering if ataxia is always evident on MRI in the very early stages? A little background:
1. My son is 8 years old
2. Born 3 months early with various issues
4. Type 1 diabetes, rheumatoid arthritis and seizures ( not yet diagnosed what type)
5. Saw neurologist for his seizures when it was picked up that there are abnormalities coming from the cerebellum (can't do the finger nose test, cannot alternate hand slapping or wherever it's called , cannot do heel shin test, cannot hop at all on left foot falls straight over)
6. I might point out that even thought he was slower to reach mile stones he could do all of the above before.
7. He trips over a lot and is very clumsy and gets quite dizzy and pain in his legs and left arm and gets tired easily now. It's taking him forever to do his school work as well now.
His speech is a little slurring but not always.
8. Neurologist ordered urgent MRI to rule out a tumour, this was ruled out as it was the main concern, however I have to wait another week for the rest of the results and more testing.
9. The only thing I know so far is neurological exam indicated cerebellum abnormality and a tumour has been ruled out through MRI.
10. Can someone please offer any advice at this point I'm going crazy the only thing the neurologist said after the MRI was no tumour but we have to wait for the radiologist report for anything else. If it was a lesion would they call me right away instead of waiting for more tests, or is it not considered as urgent as a tumour?
I am sooooo sorry for the long post I just need some reassurance of some sort.
Thank you
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Sandy811
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Thank you for your post. I am so sorry for what you and your little boy are going through.
MRIs are carried out in children who have an onset of ataxia symptoms to importantly rule out a tumour, which is an emergency. I am delighted your little boy does not have a tumour. That is great news.
There are many different types of ataxia and for some of these in the early stages, there may not be any changes evident on an MRI. If there were any changes seen these would more than likely not be an emergency and you probably wouldn’t be told as a matter of urgency. I am confident that if there were changes/a lesion seen that you needed to know about, you would be told as soon as.
It does sound from your description that your son might have an Ataxia. However it is dangerous to attempt to make diagnoses over the internet, particularly as, with your son’s other difficulties, his clinical picture is complex. Please trust your son’s medical team and do not be afraid to ask questions. They are best placed to make an accurate diagnosis.
I know it’s extremely difficult but please try and be patient and whatever you do not resort to Dr Google or look things up on the internet.
I wish you and your little boy all the best. Please do not hesitate to continue to use this forum for support.
Thank you so very much for your reply. I can't get the neurologists words out of my head that " there are definitely abnormalities coming from the cerebellum" and now waiting to find out what those problems are is so hard. He was reviewed by his endocrinologist and immunologist as well as they are aware of the new symptoms and both got in touch with the neurologist to express their concern.
What makes it worse it I said to the immunologist " what are the chances that this is nothing and just part of some sort of anxiety." ( I guess I asked this for some weird sort of reassurance in my head that he was going to agree with me and make me feel better).
His exact reply to me was " as specialists we are trained to look for red flags and he exhibits those red flags"
I guess I need answers. It's so frustrating not knowing the answers but knowing their are abnormalities but no name yet for what that is.
Of course you want and need answers. You are human and a Mum! However these are not going to come immediately. I know how frustrating and distressing this is but you have to be patient, both for you and your son.
Don’t speculate what this could and couldn’t be until you have a clearer picture. You will drive your self crazy.
I agree with HarryB and you have my empathy although technically an MRI can only show cerebellum atrophy and cant possibly conclude Ataxia (which is a symptom of an atrophyed cerebellum but not exclusively). For example, when you drink too much you display Ataxia.
Sorry for seeming pedantic but it’s a common myth that Ataxia is a disease but it is simply a condition just like pregnancy is a condition.
Welcome to Health Unlocked, so glad you found someplace to share your feelings and questions. Let me start by seconding Harriet’s words. Trust your son’s doctors to tell you what they can when they can and try hard not to use “Dr Google” (I like that and I hope Harriet won’t mind if I use it on occasion).
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I did have one thought though. Perhaps you could ask your son’s doctors if there are steps you can take at home to help your son retain his balance and coordination. There are many simple physical therapy exercises that have been shown to help people with ataxic like symptoms and maybe you could get a prescription to take your son to a therapist so you could both learn some techniques to work on at home. Maybe that would give you and your son something positive on which to focus while your son’s doctors go thru the slow process of diagnosis.
First off, sorry to hear what you’re going through and like others have said, agree with the advice from HarryB. The suggestion about getting some specialist advice about exercises seems helpful as hopefully this could be made fun for an eight year old? Something you could do together? So what can I add ? Not a lot except to say in my experience although they are very skilled in their field, these experts are not always as skilled in communicating with ordinary people like me. Being told no you haven’t got MS I already stated in my letter you have atrophy of the cerebellum wasn’t the greatest way my friend discovered she had Ataxia- not really understanding the meaning of atrophy, cerebellum or Ataxia at the time so coming away just in a panic thinking oh my god it’s awful but what is it what’s going to happen to me etc. Finding an excellent Ataxia clinic saved her sanity apart from anything else. She then used to ask at virtually every six month check up whether there had been a mistake and was the Prof. absolutely sure she had Ataxia- seeking assurance is normal not weird I think. So any advice from this waffle? Keep asking questions and if you find anything you’re not clear about keep on until you do - maybe that’s obvious but we didn’t as initially too upset/ shocked/ feeling stupid to persist. Thankfully not a problem at the Ataxia clinic with the team there who have the understanding.
My son has a type of ataxia and was diagnosed at the age of 8. He did all the milestones, slightly slower, but nothing to raise concern, however I knew something wasn’t right! As he grew, he became more prone to bumping into things, to eventually falling more, breaking his arm on 2 occasion’s. Luckily I had a lovely health visitor who believed my concerns and referred to a paediatric dr. This process was long!! He was told he had dyspraxia, but was worsening and had to start using a wheelchair. He was then referred to a neurologist, because he seemed to have ‘ absences’. The 1st appointment with the neurologist was amazing! She saw exactly what I saw! Preferred MRI and blood tests for genetic testing! This took so long as his blood results were lost etc, but eventually we were called in and given a diagnosis! His X-ray showed the atrophy in his cerebellum, but it was the blood results that gave the diagnosis. He has a rare ataxia AOA1. He is now nearly 13 and has use of an electric wheelchair and is supported by Physio, speech, occupational therapist and still under care of the neurologist. If you can get the blood test, this may help rather than just the MRI. Hope everything goes well and you don’t have to wait too long xx
Thank you so very much for your reply. I know deep down that something is not right. Yes, he has other health challenges but I just know something is different. I guess in a way we are lucky because he is under the care of a few different specialists they have all raised theirs concerns and got in touch with the neurologist. It breaks my heart because a few months ago I had to stop him from riding his bike because without fail he would fall off constantly.
Can I ask, it seems from what I'm reading that the diagnoses are a long process. Why does it take so long?
I think like with everything, going through the different channels, departments and so on just takes time! It’s very frustrating, but as with us, you’re lucky that others have raised concerns and that makes a huge difference! Go with your instinct and write down any questions and take them with you. You’ll forget everything you want to ask and write down what they say, as you’ll have so much to process.. xx
So sorry your son is going through this. I went almost 15 years without answers! My MRIs were always "unremarkable" and never showed anything. Finally my 3rd Neurologist thought outside of the box and decided to do genetic testing. I just got the results last month... Fredreich's Ataxia!
Please dont be sorry i have not got thé aswere poor lad and you faire to young to cope with this i guesd im luckily i m 73 had it years i rather have it than your young boy xxx
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