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Acoustic Neuroma and MS

kinnea profile image
7 Replies

Does anyone on here have a history both AN and MS?

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kinnea profile image
kinnea
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7 Replies
mcblue profile image
mcblue

Hi my husband had operation last year for removal of AN and in January this year he has been diagnosed with having fibromyalgia. I know it’s not MS but it is still a chronic disease that affects his joints.

drdeanbellavia profile image
drdeanbellavia in reply tomcblue

mcblue:

I have had joint problems for decades, also gout. I now take 1/2 teaspoon of baking soda (sodium-bicarbonate) every day and my joints are now free of tophi that makes them stiff. It takes at least 6 months to start feeling smooth painless joints, a year to clean it all up. Hopefully this will work for your husband's joints.

Dean

kinnea profile image
kinnea in reply tomcblue

Hi Thanks for your reply. My wife had an AN removed 27 years ago. 10 years ago she was diagnosed with MS. On a recent MRI scan for her MS she was told the AN has returned. I just wondered if any one else had similar. I don't know much about fibromyalgia just googled it. Both fibromyalgia and MS involve CNS. Some similarities in symptoms by the sound of it. I hope your husband can get the right treatment to deal with it. Thanks again.

Debs5501 profile image
Debs5501

I was diagnosed with MS 10 years ago but now displaying symptoms of AN....New lesions present but so hard to get the neurologist to explain my other symptoms....she’s only Interested in ones she can link with my MS. I’m at the end of my tether trying to get answers and all the while im suffering....

kinnea profile image
kinnea in reply toDebs5501

Hi

Sorry to hear you're having problems. Have you had an MRI scan recently? Can you not ask your neurologist to refer you to an AN specialist.

Debs5501 profile image
Debs5501 in reply tokinnea

Hi, yes I had an mri 2 weeks ago, the neurologist said she could see new lesions that she could attribute to ms but had no explanation as to my other symptoms and simply brushed them to one side.....however the ones she is attributing to MS could be attributed to an AN as I’m showing no ‘usual’ symptoms of ms....no muscle weakness, no numbness in my limbs, she said if I want referring to an ent I need to go back to my gp which is what I’ll do....I just didn’t know if lesions for different conditions look different on a scan x

kinnea profile image
kinnea in reply toDebs5501

Hi

To be fair it is difficult to distinguish what symptoms are due to the MS and what are due to AN. Numbness and tingling sensations in the head, scalp and cheek. Balance issues. these could be either/or.

I think they must look different because the MS consultant referred my wife straight away to ENT. I would go to your gp asap and insist on a referral to ENT and chase it up. Don't be shy, you can't afford to be. Make a noise and get noticed. Keep yourself in the forefront of their minds. As soon as we knew the referral had been made we started phoning ENT secretaries to make sure it was being dealt with and kept chasing them till we had a date for the appointment.

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