Diagnosis query

[Cupcake12345]

Hi All,

I don’t post often but read your comments most days.

I have yet to be diagnosed, only with cerebral Ataxia. The doctors, I’ve seen more than one and sometimes abroad, all of them are sure it’s hereditary, even though immediate family have nothing, and I am not convinced. I am 90% sure it’s been caused by mosquito bites three years ago.

I was fine three years ago. While on a family holiday to Italy I was bitten over 30 times in one evening on my lower legs, I am allergic and each bite swells to the size of a fist. One month later I was slurring speech, one month after that the MRI diagnosis. Now I’m in a wheelchair and can’t move.

Doctors don’t listen and just say I tested negative for viruses. However research last year states that just mosquito saliva can cause a negative immune reaction. I already have an immune disorder so it would make sense to have another one.

My decline seems very fast. I’d be interested to hear what people think, especially if they know of something similar.

Wishing you all well,

Zoe

[Legs-alive]

You need to get a referral to a specialist ataxia clinic. Have a read through this on how to get a referral, it’s on ataxia Uk fb page.

ataxia.org.uk/specialist-he...

[Cupcake12345 in reply to Legs-alive]

Hi thank you for the reply, my neurologist is Professor Wood who is on the list and I get seen at the Hospital for Neurology and neuroscience London, is that sufficient or should I still be referred?

[Cupcake12345 in reply to Cupcake12345]

The problem is doctors do their tests and if it’s all negative they assume the Ataxia is hereditary. With mosquitoes what is tested for in the UK routinely, is not the same in the EU continent so I need a doctor to think outside the box!

[Legs-alive in reply to Cupcake12345]

Normally if all tests come back it’s diagnosed as idiopathic cerebella ataxia or sporadic ataxia which is the same thing, just different names! It means that there’s no known cause & is NOT hereditary.

The professors who work are the specialist clinics are the top of ataxia knowledge, this is what they specialise in & they can do tests & various other things that the hospitals can’t. You’re perfectly entitled to ask for a second opinion, with a different dr if you’re not happy.

My neurologist consultant who I was previously couldn’t see anything wrong on my mri brain scan, but as soon as the professor from Sheffield ataxia clinic saw it he could see the shrinkage, when i asked him why had seen it but the other dr didn’t see anything at all wrong with the scan results, his reply was- because this is what we’re trained to do!

Have they tested you for Lymes disease? It’s a total different illness but often occurs after a bite off an insect. I’ve posted the nhs link below, if not it maybe an idea to ask them to test you? & Good luck & hope you manage to get sorted out really soon!

nhs.uk/conditions/lyme-dise...

[Cupcake12345 in reply to Legs-alive]

I tested negative for Lyme disease and the Professor I see is running the Ataxia clinic in London as well as being involved in research. I have seen three neurologists who all test the same and draw the same conclusions. I was wondering if a neurologist is the right doctor as all tests for mosquito illness I have done myself but i don’t know what I’m doing! he has said he doesn’t know enough about mosquito disease.

Abroad the neurologists have more knowledge about mosquito illnesses as there are more/different mosquitoes there.

[wobblybee]

🤔 Zoe, have you been tested for Lyme Disease.

[Cupcake12345 in reply to wobblybee]

Yes I was negative for Lyme

[wobblybee in reply to Cupcake12345]

🙂 Because you mentioned testing for viruses, I suspected you were tested. Did you ever have a bullseye rash?

.Cerebellar ataxia as the presenting manifestation of Lyme disease. ... Lyme disease was diagnosed 10 weeks later after arthritis developed. Testing of the cerebrospinal fluid obtained at the time cerebellar ataxia was diagnosed revealed intrathecal antibody production to Borrelia burgdorferi.

ncbi.nlm.nih.gov › pub...

Cerebellar ataxia as the presenting manifestation of Lyme disease. - NCBI

[Cupcake12345 in reply to wobblybee]

Thank you for trying to help, I do not remember having a rash, all the bites blended into one, my legs were massive and painful, so much so I sought medical attention while on holiday!

Is a neurologist the right person to see in these circumstances?

[wobblybee in reply to Cupcake12345]

🙂 You mentioned your Neurologist, Prof Wood. I would have thought you were in good hands. I’m also seen at Queen Square.

If you are convinced your symptoms relate to the bites, and you aren’t satisfied testing in the UK has been ‘adequate’ it is possible to have additional testing done privately.

You have to bear in mind, some Ataxias are Recessive and often there is no current family history. And, some appear (out of the blue) and progress at an alarmingly fast rate.

[Cupcake12345 in reply to wobblybee]

Thank you, I have been testing for mosquito related illnesses myself privately but didn’t think of ataxia tests too as I assumed they’d tested for everything, but it’s something I’ll do now.

[cocoa in reply to Cupcake12345]

I have just found NICE guidelines on insect bites and stings …. sorry can't share the link … good luck with getting to the route cause.

[Legs-alive in reply to wobblybee]

I’ve just asked exactly the very same question! Sorry didn’t read other answers before answering.

[suzie44na]

Hi Cupcake12345, My brother in law was bitten, he did not feel well and even now he still has chills. Maybe they can cause things. Go to Sheffield clinic, this is the best place to go in my opinion, for ataxia and diagnosis.

Suzie