Couple o' days back, I was diagnosed with 'Cerebellar Ataxia'. Trust me, it was very annoying when you went and met hell lot of doctors and still didn’t get to know what was wrong with you. Now, I am sort of relieved that finally I have my diagnosis in hand though I guess it’s scary (read it as 'excited' in my case) when you also get to know what you have will get worse with time and it is also supposed to be incurable. Before I was diagnosed, I used to joke with my friends that see I tend to enjoy all the effects of alcohol without shelling out a single penny.
So, this is how the journey started... I had viral fever and I guess after 20-25 days the symptoms of Ataxia started (Anyway, I do have a history of head trauma.). The symptoms were very mild – imbalance; could not write (either my handwriting was very big or very small), not to mention the pain in my hands; slurred speech. Then later I had head cramps, short term memory loss; impaired judgement. Initial couple of weeks I ignored it. Then I gave it a serious thought and I fixed an appointment with a general physician and I was given medicine for Vertigo which obviously was of no use. After that I was referred to an ENT specialist and then to a neurologist. Then I had couple of tests – some blood tests and an MRI. Then I was on medicine (for Hypothyroidism though I was a borderline case only) again but I was not diagnosed. This medicine was also futile and after that I was suggested by my sister to meet this so and so expert neurosurgeon in Bangalore. Met him and finally I was diagnosed – he (my neurosurgeon) showed me my cerebellum on one of my MRI films and told me it’s shrinking and he told me to accept the fact that it’s pretty much incurable. But he put me on new medicine saying that it will reduce the intensity of my symptoms and slow down the process and trust me, his medicine has been very helpful. But then I was summoned home so that they can have a second opinion. Again, I had to meet some neurologist and had to face the same diagnosis. Well, I was really fed up of meeting so many doctors so I decided to take treatment from my Bangalore neurosurgeon only. Anyway I am keeping spinal tap test (aka Lumbar puncture) for the last. I have seen some videos on youtube and it definitely looks scary and I will get it done only if necessary. Anyway I am planning to have my diet also gluten free. Though I drink very rarely, I still checked if Vodka was Gluten free. And thank God it was and it is!!
P.S. : Recently I read somewhere that it is a terminal disease (indirectly though) in some cases. From the onset of disease till death, the patient lives for 15 years on average. Anyway, I hope I last longer than 15 years. And also the prevalence of SCA's (Spinocerebellar Ataxia) is estimated to be about 1-4/100,000.
[Cerebellar Ataxia : Ataxia is a neurological sign and symptom consisting of gross lack of coordination of muscle movements. Ataxia is a non-specific clinical manifestation implying dysfunction of parts of the nervous system that coordinate movement, such as the cerebellum. Several possible causes exist for these patterns of neurological dysfunction. The term "dystaxia" is rarely used as a synonym. The International Ataxia Awareness Day is observed on September 25 each year. The part of the cerebellum most affected by ataxia is the layer of Purkinje cells. Each fold or “folium” of the cerebellum can be separated into three layers, the middle of which is made up of large, flat neurons called Purkinje cells. These cells are essential for relaying information within the cerebellum. They have highly branched dendrites that receive hundreds of thousands of inhibitory and excitatory impulses to process. Their myelinated axons extend through the white matter to synapse with the central nuclei of the cerebellum, the only cortical neurons to do so. They are responsible for processing efferent impulses from the motor cortex. It is when these cells die or become damaged that the cerebellum is unable to function properly. Drug treatments do exist for ataxia, but they have been largely unsuccessful so far. A few forms of ataxia are linked to deficiencies of vitamin E and coenzyme Q10. Drug treatments have proven effective for these types, but such ataxias are very rare and less serious than the more prevalent ones. Amantadine has been shown to slow the progress of ataxia in some people and to increase energy levels, though the results do not appear to apply to the entire ataxia population. In addition, GABAergic agents may reduce cerebellar tremors, but are not effective for treating ataxia symptoms as a whole. You can also read about Cerebellar Ataxia here – Cerebellar Ataxia.]
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[Updated on 23 June 2010]
Well few of my symptoms are gone but new ones have also joined me. I am taking anti-migraine (Trilol SR 40 - Beta-blocker - propranolol) medicines and Vitamin B supplements (Zenobal Plus/Matilda Forte). But my slurring in speech has gone, though not completely and I am free of headaches but momentarily pains are still there. I get tired pretty soon now and I am also having a bout of short term memory losses. Well I don't think I will ever take it seriously but I make sure I don't miss my medicine. Doc has also changed my medicine and put me on some antioxidants (Miraqule) but let's see how effective those are! Well I don't think spinal tap is necessary but for my family's satisfaction I might have it. But I do want to have genetic testing of my blood done, though in my case it is not hereditary yet (and I have a history of head trauma), I still want to see what are the % chances that I pass it onto my kids.
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[Updated on 22 July, 2010]
I think I should move on. Had so many tests for Vitamin B12, Anti- gliadin, Complete BC, TSH, Stomach Scanning (just to rule out any other infection) but unluckily everything is normal. Had they been positive, I would have taken treatment but all my efforts are still in vain. My only concern is my LFT (Liver function test) because my bilirubin cerebral signs i.e. my SGOT and SGPT are increasing. Well, externally I am fine as I am taking medicines for my symptoms. But internally I think my last hope is stem cell transplant (not effective though) which again will only delay things. Anyway as long I live, I have to take medicine and keep visiting doctor regularly. I think I should start working again and keep living a normal life.
You must check out Ataxia forum if you want to know more:
Ataxia Forum
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[Updated on March 23, 2012]
Well, It's more or less two years now. And I must say, I am almost free of Ataxia now. In the end, it was my Vitamin D level which was causing all the problems. It seems my body is not making enough Vitamin D on its own. So, I am on a permanent dose of Vitamin D. And yes, I do have slight symptoms of Ataxia at times but I guess, I have to live with it...
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[Updated on Sep 23, 2013]
No motor issues but my migraine is more frequent now and the pain is unbearable. My hands also pain at times. And I do have trouble recollecting words/phrases and in turn, it affects the quality of my conversations. Planning to have an MRI again and wouldn't be surprised to know if my cerebellum had shrunk further. Let's see how everything pans out!.. will let you know results of MRI once I get it done.
