*
I didn’t read the whole story but what I did read, it’s sounds like you may have SCA7 and yes this can be triggered by trauma. SCA7 affects your eye sight and balance and coordination. It runs in my daughters fathers family. A cousin of hers, was shot and this is what started the symptoms of SCA7, he is 30 in a nursing home. The accident happened when he was 21. My daughter died 3 years ago. My daughters brother has SCA7 and his only symptom is that he is losing his eyesight. There has been 6 deaths in his family from this disease.
I didn’t see if you ever had a brain MRI with contrast. That would show if there has been any damage to your cerebellum.
Yes I've been told also that Ataxia can be brought on by trauma. Ty to stay informed about ataxia. Read read and then read more. Some you read will not apply to you or help yours. In one ear and out the other and try not to freak out on what you read.
I was told that I would die within 4 years that was in 2006. Most of my symtoms have improved with regular movements daily even though I'm not thrilled having to stretch/move exercise. I do it because in the long run it helps my body respond much better than not doing anything.
I also focus on eating more vitamins and minerals which I really believe that foods are meds.
Check out Dr. Tom Clouse's website http://www.walkingwithataxia.com/ check out information down the left side of the site.
Good luck on your journey with this ataxia. I hope you can find some relief.
You have gone through a lot, Searcher!
I cannot give you much help, but I can tell you that a few things can trigger ataxia: head trau a, stroke, tumors and more. my ataxia was caused by a stroke.
In your case, I cannot tell you, but may be the jarring of your spine into your brain stem affected your cerebellum and center of coordination, causing the ataxia. I am not a doctor, this is just a thought. I think you need to see an ataxia specialist. Check the Yale Movement Disorder Clinic if you can go there, since you are in Connecticut http://medicine.yale.edu/neurology/patients/movementdisorders/index.aspx#page1
In the first paragraph of the page I am sending you, you will notice that they take a special interest in primary and secondary ataxias. So I hope they can help you. Also, if you can travel to John Hopkins, they have an ataxia Center I think.
I wish you the very best. Let us know what you find out, it might help someone else.
Take care.
Here is the website for the John Hopkins Ataxia Center http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/movement_disorders/ataxia/
hello Searcher
I have also heard of severe shock sort of trauma causing ataxia. So sorry to hear of your difficulties in getting help and a diagnosis - that's awful but not unusual unfortunately. I heard that most doctors will not see any patient with ataxia at all in their whole career - so I guess its not a surprise that they dont think of it. I suppose all we can do is educate them and publicise this horrid condition.
all the best,
Gill
On looking back there were signs of Ataxia for several years, not dramatic but none-the-less the signs were there. I suffered a major fall. About 6 months afterwords Ataxia was acute. I was told by my neurologist that it is not uncommon for folks to have this happen. I have been diagnosed with Ataxia related to my immune system. I have a history of immune issues. I had IPT shortly after a surgery and came very close to dying. Yes trauma can cause issues like Ataxia to progress more.
Good luck you are on a new life adventure.
Cant be of much help but after my stroke and laying in hospital bed for five months took a lot to get where I am.symptom wise I’ve got all you listed,and very shakey hands can’t pick things up or cups of water.
Because you see a go for ten mins if you have different symptoms confusion ensues it’s a case of what they know about. I’ve learnt so much by reading about ataxia I now tell gps what Ataxia is and were to look up if they want. Keep pushing for better help from Doctors who are there to provide a service to patients not just prescriptions to make them go away.
Doctors need to do more when a patient comes in with a different ailment.
Dear Searcher,
It is important for your peace of mind that you find out what is going here. I would say you have one of the non inherited ataxias, and it seems there's a few of them. Ataxia means a loss of control of bodily movements.
I understand it can be brought on by trauma. Mine wasn't. I have an inherited type. I blame my mother!...:) My children can blame me if they end up with it too.
I would keep reading everything you can on it, and get yourself a neurologist who specialises in movement disorders. I was already going to one when my symptoms started, as I also have cervical dystonia, another movement disorder, so he knew exactly what was going on and sent me for genetic testing to identify which type of spinocerebellar ataxia I have. Turns out that a small percentage of people with sca 6 also have cervical dystonia, so the two are related. Aren't I lucky...:/
Anyway back to you. I have some different symptoms to you, but like you as long as I'm seated I'm ok. I have no pain at this stage (I have pain from other sources), big time balance and cor-ordination issues, particularly gross motor (fine at this stage is ok). I can drive a manual car (although vision issues might stop that).
My mother (who also had sca) died at 93. Seems it's not a longevity issue (with my type at least).
I know you have a different medical system to what we do in Australia. All my testing has cost me nothing, or a minimal amount. I can only suggest you keep trying to find out what is going on. You deserve to know.
Dear Searcher, I and my neuro have no idea why I have ataxia. No one in my family, as far back as we know, has/had ataxia, except me. I've often wondered if stress can trigger it, as my first husband died when our children were 12 and 14 years. My neurologist says no. Then I wondered if it can be triggered by surgery, as I had heart surgery years ago, as well as a couple other surgeries (lesser degree). I was always so healthy, active and athletic before this (I was diagnosed eleven years ago, but had very small symptoms starting about eight years before, a year after my husband died). Anyway, you've been through so much, my heart goes out to you! Yes, stairs are difficult. I can do them, but MUST hold onto the railing, especially descending! I can no longer do escalators (up or down), two fast. ;o)
Adding to all the above. I had minor symptoms for many years before being officially diagnosed. It was a particularly stressful time in my life that suddenly triggered some major symptoms, which prompted me to go for the diagnosis. Mine is hereditary - my Dad had it. I am the only one of seven children to exhibit symptoms (hopefully will continue to be the only one). I'm also the only one who had several surgeries over the years.
I had slight balance issues and thinking back, I must have had nystgmus for at least a year before.
The stressful situation triggered major vertigo (which lasted a few weeks then lessened to a bearable level) and severe nystgmus.
The neurologist that diagnosed me was of the same attitude - good luck and good bye. No cure, Nothing I can do... My GP knew nothing of Ataxia but was willing to help. Unfortunately, I've since moved (to a better climate) and need to find another Dr. and hopefully neurologist.
You have been through a lot. Take it one day at a time. Keep exercising. Keep asking questions and learning. We are all here to help each other.
And most importantly keep a positive attitude. :)
Hi Searcher,
Glad you found this group. Online forums are a huge help in finding support and information if you suffer from an unusual health problem. Unfortunately most physicians seem to avoid anything Internet related and so never learn about anything they haven’t experienced. And in my experience most of them are so invested in their view of themselves as all knowing that they are dismissive and rude if you bring anything to their attention. In case you can’t tell I’ve had some bad experiences with physicians :-).
I am lucky though that my current Doctor is great.
Any way, about 8 years ago I had a surgery to repair a hernia and they used a plastic mesh ( very common). After the surgery I not only had agonizing pain 24/7 , I also started to lose all my energy and would become very spacey and sickly-catching every bug in sight. Over time I also started falling a lot. I had never been particularly coordinated, so didn’t think much over it. Other symptoms appeared and by 2011 I had some tremors, spasms, pain in my bones, shortness of breath, and a laundry list of other issues, and tested positive for rheumatoid arthritis and many other markers for immune system problems. I still had my job but it was extremely difficult to function, at all.
My situation then worsened a great deal 2 years ago - I was under a huge amount of stress and also had recently had a virus and my health and mobility tipped from " barely getting by, but functioning with some help, to needing help for most activities of daily living" very suddenly.
I think my ataxia was likely triggered/caused by the plastic implant ( many people with these plastic meshes have similar issues as well), and then worsened by the next trauma of stress/virus. I tested positive for HHV-6, and was given a diagnosis of Encephalitic Cerebellar Ataxia. HHV-6 is a common virus that almost everyone had as a toddler, without it causing problems. However if your immune system is down it can sometimes reactivate in adults, sometimes causing severe problems, sometimes just causing minor illness and everything in between.
So long story short, yes I definitely thing trauma can trigger ataxia. I haven’t done the testing to see what specific type I have, as my children are grown so it won’t effect anything anyway. Also, I really relate to all the emotions you talked about.
My current symptoms are: lack of balance, in coordination - very poor large or small motor control.
Extremely high blood pressure. Choke easily on some foods. Spasticity. Weakness. Fatigue. Tremors. Can’t open my mouth very wide and pain in jaw. Weird facial grimaces and vocalizations ( the vocalizations are new :-((. ) , pain in bones and joints. Stiffness in bones and joints. Shortness of breath. And I know I’m forgetting a few.
Yes, it's kind of really sad that we provide each other with more information than what we get from the "experts". Too bad that the majority of them don't read these forums too. They could gain so much information and be more helpful if they did.
I do not want to offend any one, but doctors should not always be blamed for not knowing about ataxia. The knowledge of the human body and diseases they have to absorb in a few years is unimaginable. To retain and know everything is not humanly possible. Rare diseases are rare, some so rare that, as it has been mentioned before, some doctors will never see one case in their entire career.
It is true that money is very scarce for research for those diseases, and this is why if there is a choice to be made, the money will go to cure the most people who suffer from more common illnesses like diabetes or cancer than for a handful of rare diseases patients. I know it sounds cruel and cold, but these are the facts of life.
I have another rare disease and years ago, did a lot of research about it. My doctor, who was a wonderful man, told me one day I knew more about the disease than he did and asked me to tell him anything new I would find that might interest him. He admitted his ignorance, but he remembered hearing about it mentioned once in medical school and that was it. He added that he was so busy that he did not have time to read all the medical reviews and article he was bombarded with everyday.
Doctors are human beings, so they have faults like all of us, but I respect doctors who will admit their lack of knowledge and who are honest enough to tell us that they cannot help us. We need to make our voice heard but we also have to come to the realization that there are some diseases for which a cure might never be found. Some are too complicated with every case being different, so this makes matters even more difficult. Take the case of Ataxia: how many different kinds are there? Too many to enumerate. So if they find a cure for one, is another one going to be cured too or do they have to find another cure?
Research takes many, many years…
I am not telling anyone to accept automatically what doctors tell them, but keep trying to find a real specialist and even if doctors do not like to hear it, tell them that their answers are not acceptable. Keep fighting to find an answer. We are here to help each others.
Off my soap box… Be well everybody.
The reason why we can hold things sitting down and have difficulty walking is because of our centre of gravity. It changes once we sit down, and our bodies think things are normal. Once we walk, it keeps changing because of the movement.
When I was diagnosed with cervical dystonia, my gp (in fact most doctors I saw) knew nothing about it, yet it's as common (?) as Multiple Sclerosis. So I had to educate him and my physio. Now I'm educating them about SCA 6. Both are happy about that, because it helps them to help me, and it helps them to help others.
I am only newly diagnosed with SCA 6 and will see the neurologist again for a major talk about it next month. I am fully expecting that he will say there is no cure. I am interested to see what he comes up with for treatment. As far as I'm aware there's not a lot of that either. However I AM expecting him to be helpful with management issues, and to tell me what is likely to happen in the future.
I do tai chi (on his advice) and I've been having water therapy (on the gp's advice). Both have helped with the balance issues, but nothing has improved the co-ordination so far.
Like everyone else here, I find life a challenge. I'm probably not as bad as some, I don't need a walker yet, but I don't venture outside the house/yard without a walking stick. I find some tasks incredibly difficult, and have had to find new ways to do things, and some things impossible, and I just have to swallow my pride and ask for help.
Like you, Searcher, I live alone. I was married, but that broke up because my husband who had ptsd (another war veteran) and who had many demons, started to see me as one of them. So I left. He now has dementia and is in care. He is only 68. I feel so sad for the way life has treated him. Also like you, he was an incredibly intelligent man, and a wonderfully helpful man to the community. We have all lost so much because of his illness. We are not divorced, and it's unlikely I'll find someone who would be prepared to take me on, so I'll be on my own forever...:) However, I am very good friends with a neighbour who has been delighted to help me as I need it...but like me he likes his own space.
Your doctor told you to "embrace" your condition. To me that means acceptance, which means the first battle lines have been drawn in fighting it. It doesn't mean you sit down and let it all happen, it means you work out the best way to have the best life you can. It means the condition doesn't control you. Yes you have it, but you fight to keep the quality in your life.
My turn to get off the soap box now...:D
Searcher said:
Wow ! This is the most information I have ever gotten on my health issue , far more than from any doctors or Neuros .
I watched that video posted to the replies and I am not too far behind the young fellow who is trying to pick up his daughter . On a bad day I am him and on a good day I am the older fellow . although my speech problem presents itself differently , I am more slow and sound like Marlon Brando in the Godfather , I cant talk fast if I try it just comes out as mush ! Even trying to carry glass of water into the next room is a task I have to juggle the walker and the water and try to balance , most of it just goes on the floor ! But if I am sitting I can sit there like the statue of liberty all day long holding the glass and not spll a drop . its weird .
Stress yes, Several years before the accident I had a massive amount of stress in my life , 250 down to 180 in two months , my normal weight is 230 ( where I am now ) so some of it needed to go , just not that way. I have always been extremely active , walk 4-5 miles a day, hobbies , work etc. Long hours , work hard play hard , you know the type.
I wonder if stress can trigger this also , anyhow I am concentrating on moving forward , looking for a cause and some form of treatment , Looks like I am doing this a la carte , ( no doctors ) ,or at least till I find ones who know something or are willing to investigate .
Please keep the answer sand post coming , thank you all so much for the guidance .
I am afraid that WE, the patients have considered doctors like Gods for too many years. Because they are doctors, we have believed that they could cure everything and knew everything. Let’s face it they can’t and don’t. With the spread of Internet, patients are getting more knowledgeable about heir health and some doctors do not like to be questioned and might feel threatened…
You have every right to be upset about the medical system. You have a complicated medical history and you need a doctor to do some detective work. I am not joking, you need a doctor willing to investigate every clue in your history. Usually, internists are good at this. They look at the whole picture and try to figure how symptoms are related to each other. Specialists will look only at the one body part they have studied and often ignore the rest. This why we jump from one doctor to the other. They should all sit together and discuss patients cases.
I wish you the very best in your quest for health.
I don’t expect Doctors to know about every disease or condition or treatment. What I would like to be able to expect is that if they don’t know the answer to something they don’t dismiss it - and the person trying to live with it. I would like to be able to expect that they might possibly, occasionally acknowledge that people sharing their experiences with each other might lead to knowledge that is useful to medical professionals. It is many Doctors absolutely mind-boggling arrogance that I find appalling -not that they don’t know about every specific health issue. I really don’t even understand the lack of intellectual curiosity that many of them display. They seem to be under the impression that if multiple peer reviewed and published studies haven’t been done, the issues simply don’t exist.
I know not all Doctors are like this, many are wonderful. My current physician is great and researches things if he doesn’t know about them and makes connections and actually listens, but in my experience this has been the exception, not the norm. I hate to be so cynical I just find it very frustrating that so many physicians seem unable to understand that if you have a medium that allows billions of people from all over the world to find others who share their same symptoms, that it could be very, very useful in their understanding of diseases and treatments.