Awaiting a diagnosis

[Madona_1981]

Thank you for accepting my join request. I am Very sorry about the long post

I was born in the early 80s and at 18months old I was diagnosed with congenital nystagmus (no family history of the condition) I have a partially sighted but again to explanation as to why as nystagmus alone does not necessarily cUse this problem. I have always struggled with balance coronation and 12 moths ago I developed a tremor in my right had in October last year I saw a Neurologist (gp thought it was an essential tremor)who after going through my history believes that I actually have ataxia, I was refined to a specialist clinic here in the uk in January but due to COVID that has been delayed, but over the last few months things have changed a lot, the tremors are worse and so is balance and codanation. I see my nerogist tomorrow after calling him, but I am really worried he will I sit that we wait to the specialist appointment before we have a plan, I am really struggling and feel like that no one is bother how much things have changed in 12 months, does anybody take medication for tremors I think if I can get these under control I’d be able to find my new normal

[wobblybee]

Hi Madonna, welcome 🙂 Best wishes for a successful outcome for your appointment.

The symptoms you mention will be familiar to a lot of us here, and quite a few people have no family history.

Many people have to cope with tremors, and there are medications known to help, your Neurologist should be able to help with this.

It’s can be difficult to concentrate and take things in at appointments, so if you can, make a note beforehand of specific questions you want to ask. If you don’t understand something, ask for it to be repeated, or put in a different way. 🙂

[Litty]

Welcome and good luck, we are all slo different and I can just tell you what seems to be working for me.I just told my Shiatsu girl stuff so here it is

My list

Part of Ataxia is a cognitive and behavioural change which I don’;t necessarily notice but the family does. That includes not being able to control my emotions. So I am taking low dose Prozac (Fluoxetine) which is having an improvement with no noticeable side effects.

healthunlocked.com/ataxia-u...

We had phone chat with Dr Gunti at London Ataxia Centre - and she recommended the Prozac and Propranolol to help with my shakes/tremours. We are not sure whether that is working yet. With guidance from our excellent GP we are moved from 1 10mg pill twice a day to 4 twice a day. Those have not had any bad side effects.

Propranolol 10mg tablets

take one twice a day

Fluoxetine 10mg capsules

take one daily

Dry skin - Cetraben cream

I take a lot of oestrogen highish dose - I think I had bad Endometriosis.I had a great gynaecologist who sterilise me when I knew I had ataxia coming.I had a total hysterectomy - Dad had just died from weak throat muscles. My lovely gynaecologist said I should have his hormones - and teased me that the ataxia would get me way before the high dose. Also my sister and mum both had ovarian cysts. As general aesthetics are dangers with advanced ataxia it is thought best to do that whilst I was young.

I mentioned Arginine and here is an article on the Ataxia UK website about it ataxia.org.uk/blog/arginine.... Lit has bought some L-Arginine capsules from Lindens on line which are 500 mg and it says take 1 to 3 per day. I read somewhere that it can interfere with other heart rate/blood pressure tablets so would welcome your advice on whether Lit can take it.

- dr says fine xx

This is rather long - hope helps x

[Madona_1981]

Thank you for your comments I had a very good appointment yesterday and the neurologist listened and reassured me I had not been forgot. He has prescribed primidone 50mg, for the tremors and he was called this morning to say he has chased up about me been seen at the ataxia centre in Sheffield and I am at the very top of there list and they will be in touch in the next few day’s. It feels so food to finally be getting some answers.

[Litty in reply to Madona_1981]

x

[Veteran250 in reply to Litty]

Madona my lovely, I have suffered with tremors in both hands all of my life, since I was a small boy, I do not take medication for it, I have learnt to live with it.

I also have no coordination, and fall down often..... I am now 76, so the tremors have been with me for about 70 years! 😀🌈