Question on information

General
21

Hi Donnybluewayne,

if the symptoms have come fast, you could have an acquired disorder causing ataxia.

These are (exemplarily) listed in the Handbook of Clinical Neurology Nr. 103 in the chapter "Approach to ataxic diseases" by S.H. Subramony, p. 130 Table 6.2. as

Congenital: ataxic cerebral palsy

Vascular: ischemic stroke, hemorragic stroke, AV malformations

Infectious and para-infectious: acute cerebellitis, post-infectious encephalomyelitis, cerebellar abscess, HIV, CJD and its variants

Toxic: alcohol, anticonvulsants, mercury, 5-FU, cytosine arabinoside, toluene

Neoplastic and compressive gliomas, ependymomas, meningiomas, basal meningeal carcinoma, craniovertebral junction abnormalities

Immune: multiple sclerosis, para-neoplastic cerebellar degeneration, anti-GAD related, luten ataxia

Deficiency: B1, B12, hypothyroidism

--

Have you ever got a stroke? There could have been also "silent" strokes, which you did not notice, bleeding from hemorhagic vessels in your head. Maybe you will get an earlier diagnosis if you would contact an unit in a hospital for strokes! Alcohol could have caused this. I ve got a friend in Vienna who had been drinking for decades, and stopped with it some years ago. When i met him one year ago, he was somehow slowed down, but ambulatory. This summer his state degradated fast and now he is in a care home. Doctors told him that he would have had strokes as a reason for it. He is almost not able to go; maybe with a rollator; not able to write; almost blind!

In your situation such strokes, which you did perhaps not notice, could be very dangerous for you. Rehabilitation is possible. I would not wait any day longer if possible and to contact a stroke specialist soon because of reasons of caution. If the state would be too advanced rehab would be more difficult or impossible for some symptoms..

Good luck!

22

Handbook of Clinical Neurology

Volume 103, 2012, Pages 127–134

Ataxic Disorders

Chapter 6 - Approach to ataxic diseases

S.H. Subramony

http://www.sciencedirect.com/science/article/pii/B9780444518927000061

This chapter explains to the neurologists how they can find a diagnosis for your "ataxia".

(Not for free, you could buy the chapter in the internet or the whole book on amazon.com)

In the case of alcohol causing cerebellar degenerations, this should be seen on the MRI. As you have got already a MRI, i would try on your place anyway to contact a stroke department for assuring that you would not have had strokes. If it would be "only" cerebellar degeneration caused be alcohol consuming, this is of cause also sad, but perhaps not so dangerous and urgent than in the stroke case. But this is also a very serious disease, and i would also to try a fast diagnosis, if still drinking, immediately seeking a stationary withdrawal cure so that your state would not deteriorate further in an unnecessary way and end with a difficult to treat psychological syndrome.

For this you may buy from the same abovementioned book the "Chapter 10 Nutritional cerebellar degeneration, with comments on its relationshop to Wernicke disease and alcoholism". It could also help to show the Mri plus this book chapter to your general practicioner and ask him for urgent help! For the next steps to do.. (withdrawal is always recommendable, but surely other steps will be necessary for which your general practicioner could provide you assistance! Wernickes disease can get extra treatment!

23

Mmmm whilst interesting I rely on my Consultant and his team for support, which I find to be great.

Why the talk of strokes? I've had 2 x MRI scans surely a stroke would show itself on one of those?

My Consultant is a renowned and respected researcher in the UK, and I am eternally grateful for his help.

Whilst I myself join in discussions, and I do find advice from fellow ataxians helpful, I think as laymen we have to use this information sparingly whilst always putting trust in our medical professionals.

Not meaning to sound rude, but that is how I feel, find some things on the internet very disturbing and so does my Consultant.

I will continue to read discussions with interest

DBW

Akita said:

Hi Donnybluewayne,

if the symptoms have come fast, you could have an acquired disorder causing ataxia.

These are (exemplarily) listed in the Handbook of Clinical Neurology Nr. 103 in the chapter "Approach to ataxic diseases" by S.H. Subramony, p. 130 Table 6.2. as

Congenital: ataxic cerebral palsy

Vascular: ischemic stroke, hemorragic stroke, AV malformations

Infectious and para-infectious: acute cerebellitis, post-infectious encephalomyelitis, cerebellar abscess, HIV, CJD and its variants

Toxic: alcohol, anticonvulsants, mercury, 5-FU, cytosine arabinoside, toluene

Neoplastic and compressive gliomas, ependymomas, meningiomas, basal meningeal carcinoma, craniovertebral junction abnormalities

Immune: multiple sclerosis, para-neoplastic cerebellar degeneration, anti-GAD related, luten ataxia

Deficiency: B1, B12, hypothyroidism

--

Have you ever got a stroke? There could have been also "silent" strokes, which you did not notice, bleeding from hemorhagic vessels in your head. Maybe you will get an earlier diagnosis if you would contact an unit in a hospital for strokes! Alcohol could have caused this. I ve got a friend in Vienna who had been drinking for decades, and stopped with it some years ago. When i met him one year ago, he was somehow slowed down, but ambulatory. This summer his state degradated fast and now he is in a care home. Doctors told him that he would have had strokes as a reason for it. He is almost not able to go; maybe with a rollator; not able to write; almost blind!

In your situation such strokes, which you did perhaps not notice, could be very dangerous for you. Rehabilitation is possible. I would not wait any day longer if possible and to contact a stroke specialist soon because of reasons of caution. If the state would be too advanced rehab would be more difficult or impossible for some symptoms..

Good luck!

24

Sorry for having inconvenienced you. Perhaps there was a misunderstanding occurred with your presentation here in the forum, - and also my English is not good enough for understand the fine annotations between the sentences.

I thought that you would have to wait now for 12 weeks to go to a specialist, and - written in another posting by you - your symptoms worsen and almost no medications helps. in times like these we have to consider that there are persons in the web who don`t actually have a specialized neurologist to ask and then go to a forum. You mention Dr. Hadjivassilou in your introduction. This is really a reknown specialist.From your feedback i know that your introduction is not updated and you have actual access to good support by specialist/s. Look, the book chapters i wanted to advise you or your doctors to, are from this very book, Dr. Hadjivassilou has contributed to with Chapter 11 "Immune-mediated acquired ataxias". Surely he has got the book and knows the content. All contributors to this book are reputated neurologists. When your Consultant finds some things on the internet very disturbing, i cannot think that he meant this very book. Be sure that i only wanted to direct you do be cautious for the mentionend problems. If these have been clarified by your consultant team its wonderful. Then my posting was unnecessary.

In my experience from a leukemia forum this was a nice forum with mainly emotional support, but dying so many of the patients that this encountered me to study for my own.

There are German sayings: "Everybody is cooking with water." and "Nobody is without failure." In this very sense i want to direct this sort of critics especially also to myself.

Maybe i should more discuss with medicians.

So, supposedly, you have been looking mainly for patient`s support here for emotional coping, and it s really possible to get this here!

Have a nice evening,

Akita from Austria

25

Have been told there is no medication that will help with the symptoms, so I go with that.

A vast percentage of info on the internet is rubbish, this forum is good for emotional support yes, my main struggle is knowing I will not get any better, and most certainly worse, I find this particularly difficult.

Being British, I have never tried very hard with another language, a trait of ours, your English is very good, I admire you for that.

Thank you for being so understanding

DBW

26

For me it is helpful to get my diagnosis (diagnoses), and as soon i am on this point, my state will get better after a few days. First i thought i could have a spinocerebellar ataxia 6, because this ataxia is in my family, but the genetesting resulted in a "no". Now i am personally sure i have some sort of ataxia telangiectasia,- for the diagnosis i will have to wait and struggle for a while. For me the insight, that it is not 100 % sure that my state will deteriorate further (- i cannot say, because not many persons with A-T-variant in my age have been reported- it s possible that i would have a mild course-),- the worst in the last days for me was the possibility having affected one or two children of mine with this hereditary disease, at least in the form of being "carrier" of only one gene mutation. Even in this case they have an increased possibility to have cancer (leukemia or lymphoma in their life). I think, when i know what my problem is, i can adress it by changing my behavior, my treatment. Humans have such states which deteriorate by time: We are aging, but we can learn how to cope with this fact. The furnishment of our appartment gets old , but we can learn to accept living in it when we cannot buy a new one, - or even like the old equipment. Look, - i don`t know your special disease story and your actual treatment. But i ask me, why your state gets worse so fast. I myself am concerned by a similar problem, when an ataxia slightly started two years ago with some gait disturbances, but some months later progressed much. Why that? I did not find a satisfying solution. Maybe some different causes contributed to that. After my stem cell transplantation in 2008 i have met a lot of doctors. Not so, that i would have lost my believe in them, but more that i think they are only humans and have got their strenghts and weaknesses.

What regards your symptoms, - why do you know that there would be no cure? There are so many causes for ataxia, and not all are "degenerative" and progressing. Only- your actual state is not desirable. For nobody. I would wish you by my heart that the reasons, the diagnosis is found soon, and there would be a treatment which gives you back your health.

"Have been told there is no medication that will help with the symptoms, so I go with that."

- In my view there could be at least two reasons for that they said this to you:

1. because there is still no diagnosis found, and the treatment could be the wrong one.

2. because there is no school medication by which you could be treated correctly only symptomatically, without a diagnosis.

In my case: The neurologist, director of the department of neurology in our university clinics was asked by me if he could give me a medication. This was in beginning of September. He said no. Only with a diagnosis of SCA6 he would consider to give me one (two were mentioned). I was very unhappy because i felt that i would have a sort of deteriorisation episode. Now it had come out that i don`t have SCA6. The deteriorization must have had another reason, supposedly the fotochemotherapy PUVA in summer till end of august, which was not so well tolerable for me because of the other ataxia. So the medicament for the other ataxia disease would have been wrong..

It has been said that it would be the worst - telling newly diagnosed people that there would be no treatment for her/his ataxia. It takes away all the energy. And somehow this is not right. Forum members have reported a lot of personal cures which are successful, e.g. switching to gluten free cost, meditation, body exercise..I think a person always grows into a better state, even if the components change...