Hello newly diagnosed

[motherelle]

Hello I have recently been diagnosed with Cerebellum atrophy ,this was discovered while looking for reasons for muscle wasting of the hands ,forearms and shoulders .I have suffered with intermittent fatigue for over 20 years and was diagnosed with Hypothyroidism 10 years ago . I have had 2 EMGs both normal . I am under professor H ,he wrote recently telling me the results of a magnetic resonance (MR) spectroscopy ,he said they had found abnormalities within the Cerebellum and that they would be keeping a close eye on me .He made no mention of what had caused the abnormalities or if there would be any treatment .Is this normal ,to be left for another 5 months . He has prescribed Vitamin E supplements ,which have totally cured my insomnia but have caused ,I believe even more severe episodes of fatigue . Where do I go from here ,should I be pushing for a clear diagnosis ?

I have noticed slight unbalance when i'm tired ,say while doing a long walk .My writing has become more untidy over the past year .I also seem to be suffering with apathy . I am also experiencing sweats . I have not felt like the real me in a long time .

Any help or advice would be greatly appreciated .

[wobblybee]

Hi motherelle!

Quite often there isn't any clear reason for Cerebellar Atrophy.

Most people have yearly checkups, just to monitor the progression.

Prof Marios H is usually highly recommended and most people

accept whatever his diagnosis is, he specialises in Gluten Ataxia.

My MRI showed Cerebellar Atrophy, there was no medication or

treatment prescribed, although since diagnosis I've taken

Sertraline for depression.

Severe fatigue can be exhausting, I've slept for hours at a time

during the day. I had my Thyroid level checked at the GPs, apparently

it was within range, I'm not convinced.

Insomnia was a problem for a while, in my case I think stress was

the cause, things improved when I started taking Sertraline (50mg)

at night.

I take Vit E myself, it's not prescribed. I really can't say whether

it makes any difference to fatigue. I also take COQ10, personally

I think that helps with fatigue. Brain fog/cognitive issues can be

challenging at times for me, sometimes as soon as I turn around

I've forgotten what it was for

Writing was terrible for a time, at the moment it's fine. Slurring was

common, at the moment not so much. Apathy, comes and goes.

Sweats, I'm well past menopause but at times you wouldn't think

so! Weeks can go by when things are on an even keel, then out

of the blue I'm either really cold, or too hot! If I'm cold, my nose,

hands, legs and feet are worst affected. If I'm hot, sometimes I

actually have to rush outside, desperate for cold fresh air.

Balance, I'm aware that it's a problem constantly. The degree of

severity varies.

Muscle wasting, I find carrying the vacuum cleaner upstairs is

challenging, and my grip isn't as strong as it use to be. I can't

hold my arms up for very long, such as when I need cope with

my hair.

If you don't know anybody else with Ataxia, it's really helpful

to join a Support Group, knowing you're not alone in coping

is empowering.

Also, look at Living with Ataxia.org it's also very helpful.

You don't have to join just to explore the site.

Best wishes xBeryl

[jurgen]

Hello "wobblybee",

thanks for your lines !

I´m a member of a German SCA-forum as well.

ataxie.de/forum.php

Hopefully, you don´t mind my copying & pasting part

of your answer.

Regards

Jurgen

[wobblybee in reply to jurgen]

Of course I don't mind jurgen, I hope you are well xB

[motherelle]

Hello Beryl ,

Thank you for your reply . I think because I have hypot I want to be reassured that the atrophy wasn't caused by

a T3 problem . I have been passed from pillar to post over the past 2 and a half years being told it may be MS or

Myotonic dystrophy or even worse ALS . The Neuro I saw before Prof H was not all that helpful and had me waiting

many many months in between each appointment . He didn't even bother to look at my scans ! Thank fully he

finally referred me to the Prof but because of the time span I have done a lot of research myself and the T3 problem

is something that has stuck in my mind . Prof H did a lot of blood tests and tried to get T3 done but one again the

labs in their wisdom refused .My Vitamin e result came back low ,hence being put on supplements .I did some

research as I could not understand why it was low as I have a lot of foods in my diet containing this vitamin .I now

know it has nothing to do with diet but don't understand why no one is finding out the cause .My Gp is writing to

Prof H as he felt there wasn't enough information in the letter he sent .

In regard to your Thyroid status have they ever tested you for anti bodies , also do you know what your results

were ? Many people have a fight on their hands to be diagnosed with thyroid problems . I am not saying your fatigue is

due to thyroid as i have read Ataxia can cause fatigue but it is always worth crossing the t's and dotting the I's .

Thank you for sharing your experiences with me Beryl ,it is nice to have someone to compare notes with .I will

check out the links you advised .

Hope you are having a good day !

[wobblybee]

Oh motherelle, I had such a bee in my bonnet at one time about

not being adequately tested for thyroid problems.

I'm unable to find the actual results of the test, as far as I recall

I registered 2 in a range of up to 15. It was just a regular test, no

mention of T3.

Because of the MRI proving Cerebellar Atrophy, I have to accept

that. But, there's still a nagging thought that there might be

something else at play.

From research I can see that it's just as tortuous a journey with

Thyroid as it is with Ataxia.

Another string to my bow as far as conditions are concerned, is

Candida. A Kinesiologist diagnosed me with Candida, I was

complaining about pretty much the same symptoms as I have with

Ataxia.

Candida can affect every part of the body, and can also cause

Neurological problems.

Like Gluten Ataxia, it's mainly brought under control by diet.

Yeast and sugar are the main things to avoid, a whole new way of

eating is prescribed, as well as probiotics.

There is an initial period where you feel symptoms are actually

worsening, and there's temptation to fall off the wagon. This is

known as 'die off' and proves the diet is working.

So, I haven't ruled Candida out either. Incidentally, this can effect

both men and women. xB

[motherelle]

I have sent you a pm wobblybee . The candida is interesting stuff as well .I have been referred to a mouth specialist because for over a year now I have had a strong salty bitter taste in my mouth . Prof H says the cause is not neurological . I am hoping that they do swabs of my mouth and come up with some answers .

Motherelle x

[wobblybee in reply to motherelle]

I recall a post I read last year, re an unusual taste. Oh, I remember now,

it was relating to a 'tinny taste' xB

[february]

Dear Motherelle, A HUGE welcome to this site! From what I've heard (I live in the States) you/re in good hands with Professor H. I was diagnosed with Sporadic Cerebellar Ataxia eleven years ago, but had small symptoms several years before diagnosis. My ataxia affects me 24/7 and my neurologist has no idea why I have ataxia. I have atrophy of the cerebellum, but all me other tests (nerve/muscle, blood tests) were normal. Hence the "sporadic" diagnosis. No one in my family, as far back as we know, has/had ataxia, except me. It effects gait/balance (I use a quad cane to prevent falls), dexterity (writing/printing/fine motor skills,. speech (slurred) and swallowing (sometimes coughing/choking). I get very tired. I take a multi-vitamin, Vitamin B-12 (1000 mgs), Vitamin D (1000 mgs), CoQ10 (600 mgs/300 twice day), 2 fish oil caps, 1 flax seed oil cap. I take all these daily per my neuro (never take anything without talking to your doctor first). My ataxia has progressed, albeit slowly. I find exercises for strength and balance are helpful, as well as physical therapy, when possible. I also do stretches each day, as my muscles get so tight. I see my neurologist every 6 months, and have had a CT scan every five years, to monitor the atrophy. Although difficult, I try to have a positive attitude and not think about the future, live life one day at a time. I try to be thankful for all I can still do (very slowly, rather than focus on what I can no longer do. I count my blessings, as there are so many! My best to you...,;o)

[motherelle]

Hello February and thank you for the welcome . Can I ask have you seen any wasting of your muscles ,especially hands ! This is why I was first referred to hospital ( Neuro surgeon first ,then Neuro and finally on to Prof H ) .

I do like the prof but feel like I have been abandoned ,he just asks me what is bothering me the most at the moment .I must say it is the fatigue but he didn't give me any indication if this is caused by the atrophy . My Gp is writing to him

as he feels neither myself nor him have been given enough information . I am guessing some of your vitamins are to

increase your vitamin e (flaxseed ,fish oil ) . He just prescribed the supplements (evion 100mg ) but didn't tell me anything about them .I believe there is a natural version which I would prefer to take . I understand that low vitamin e is not caused by a diet lacking in this vitamin and that people with ataxia tend to be low .

Like you there has been no one in my family with this sort of illness . I still want to rule out Hashimoto's as a reason

for my atrophy . I do not feel ready yet just to accept that it is degenerative . My balance is fine unless I exert myself

then I tend to wobble .I also had difficulty with the balance tests ,standing on 1 leg ,walking heal to toe . I also have

periods of clumsiness but this does coincide with my thyroid levels being off ,same with the brain fog !

Do you suffer with apathy ? I have periods of severe apathy ,I am going through one at the moment .I find it so

frustrating !

I have a lot to learn about this condition and I thank you for your in put .I hope I can be of support to you and others

as I feel chatting and discussing with others in the same situation is such a great help and comfort .

Take care ,I look forward to getting to know you all better !

Motherelle x