5 weeks ago I had a routine op to help with severe stress incontinence. Unfortunately did not go to to plan and ended up in retention . Over the last few weeks in and out of hospital due to infections and a second op to insert a SPC catheter. Along with this it was noticed that I had uncontrollably twitches which have led to quite lively spasms throughout the body. I saw a consultant and on examination had balance issues & tremor. He thought this could be some form of Ataxia ( never heard about it before) but never elaborated, also had Jerky knee reflexes. Waiting to be referred to neurologist.
When looking up ( I know you shouldn’t) & Have suffered with migraines, vertigo, tinnitus and many a time felt drunk when I wasn’t for years. What hasn’t helped is I’m peri menopausal which plays havoc with me too.
I have had MRI spine and neck but waiting for results!
Any info or advice would be very welcome.
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Bizzyissy
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While I was PeriMenopausal I noticed odd symptoms creeping in, I couldn’t tell what they were related to..I didn’t have such as you describe, mine were related to DeJa Vu and feelings of losing balance. Then I started having eye issues.
My current Neurologist thinks the DeJa Vu could be linked to Silent Migraine, I’ve only ever had one severe headache.
Sometimes it’s frustratingly difficult to pinpoint a Neurological condition despite exhaustive tests, this can be because symptoms sometimes ‘overlap’ and testing is inconclusive.
🙂I hope you’re referred to a Neurologist who specialises in Ataxia.
It can be hard when anxiety and depression are added to the mix, I really struggled in this respect prior to being diagnosed. My Neurologist suggested a mild anti depressant until I was able to get things into perspective..it did help 🙂
My mind is even more confused. Got a letter today from the dr I saw and although had told me he was doing the referral it seems he hasn’t only he has changed it to if symptoms persist after discharge. His diagnosis was just hyperreflexia which he never mentioned. He just mentioned eposodic ataxia! Very frustrated.
😯 It’s really confusing when you get a copy letter that mentions something that wasn’t discussed at the appointment. One of my copy letters mentioned things I was supposed to have said...I didn’t. It actually made me wonder if she was referring to someone else.
I don’t test positive for current types of EA, but my Neurologist suspects it because of my history of symptoms. She even mentioned it could be Recessive (no immediate family history, but parents could be carriers), but there’s no reference online to Recessive EA.
Hi,I’m not sure where exactly you live, but on the Ataxia UK there is a list of specialist centres for Ataxias around the UK.
If you are seeking a referral, make sure that it is for the named consultant/professor, you might as well get the best opinion possible.
Add to the appointment, I would insist On a full diagnostic tests, including spinal cord fluid testing. I would also insist on a multidisciplinary therapy team assessment.
Once they have done all the genetic tests available and the multidisciplinary team have given their input, you will have a much clearer idea of how to proceed.
I am glad to see that you’re not a person to easily be fobbed off, unfortunately due to budgetary restraints, the specialists are not always keen on doing all the tests they have available.
My thoughts (our son has a rare type of SCA, called DRPLA) we’re always that one can’t fight an on diagnosed illness, however, we are very lucky to live in the age where genetics and medicine are progressing on daily basis and curative medication is in the pipelines.
You will only be able to get access to those if you know exactly what you have.
It took us a few years, a few second opinions, followed by booked a trip to the Mayo Clinic in America for three diagnosis to finally get our son a full diagnostic testing and a final diagnosis.
Under NHS you have the right to all of those.
And if for some reason you are not happy, you always have the road for a second opinion.
The more of us who exercise these rights, the better the diagnostic path for all future patients will be.
Also, there are many other neurological illnesses which could cause your difficulties, if it is not Ataxia please don’t stop looking, you just can’t fight against undiagnosed progressive illness. You can only fight for your life once you have a full diagnosis.
I wish you all the best, and if you have any further questions please don’t hesitate to ask here, we will all do our best to help.
I have some same symptoms as you, tinnitus, migraines, muscle twitches, vertigo and walking like I’m drunk when tired.
My first issue was unsteadiness on my feet. Then came tinnitus in one ear. It was awful w constant ringing, but I got used to it. I never had vertigo until recently, 8 years later. My migraines started in my upper 30s, but they never gave me vertigo. My one vertigo attack cane out of no where, had no migraine or headache at time. It lasted two days, and I fell in my bathroom.
The supplements I was advised by a neurologist helped my muscle twitches, along with sporadic numbing in hands/feet. I have no Ataxia diagnosis, although the neurologist saw I couldn’t walk a straight line and had other issues. So I’ve had to do my own research.
Ataxia can be a symptom of something like Chronic Lyme, MS, Hypothyroidism. It’s good you have a doctor familiar with Ataxia and you had an MRI. I hope you get answers soon to what’s happening to you. Good luck!
Finally got my MRI results today, the spinal scan was clear, however the Brain scan has showed ischamic changes. Waiting to see neurologist. Still have the spasms but just need to keep calm & carry on.
Thanks for the update. Good you had the MRI scans. Hopefully the neurologist can understand and explain what is happening to you. Sending you positive vibes!
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