Hi everyone! I need help, here is my story.
two years ago I began noticing my leg would bounce if on the ball of my foot, then my fingers would spasm randomly, and I would drop things easily. I then had the flu and a few weeks later my legs spasmed uncontrollably. After tons of tests they told me I was having an anxiety attack. it went from bad to worse, I couldn’t find words when trying to speak, I could not swallow correctly, my whole body buzzed from the inside out all the time, and I had electric shocks all over my body. My muscles were so tight and extremely painful and no amount of stretching could relieve the feeling. I had zero energy and relentless nausea. it took 9 months to calm the spasms but the nausea continued. They thought I had a viral infection that had crossed over into my spinal cord after having a spinal tap. Fast forward to January of this year, I started to feel “crazy?” I knew something was very off, I had a fear of going to work, was really obsessive over silly things, could not sleep, and then bam, the spasms returned as did everything else over the next few weeks. Still waiting for more test results but Spinocerebellar Ataxia is the preliminary diagnoses. I can barely walk, function, cant stand loud noises without feeling like I am being shocked by electricity, have foggy brain, and can’t speak correctly due to vocal spasms to boot. I have no idea if this will subside as it did last time, or if it will be ongoing. Age 37 at onset 
So many other things happening to many to list, but horribly hyper reflexive even on all of the baclofen, and about a month ago I had what I thought looked like a bug bite on my wrist, itchy and red bump, over next few days many popped up all over my left hand. Just today a new one appeared, what is that about? Also was checked for vit E deficiency and to my surprise it was significantly high, even though I haven’t had much of an appetite as of late.
So many questions, and still trying to pin down exact causes of this. Sorry for such a long post!
I wish I could help. But since I’ve only recently been diagnosed I’m not experiencing those symptoms yet. I just wanted you to know people are listening. Good luck
whereabouts are you? We have just discovered Applied Systematic Kinesiology (medically recognised in the US) but very similar to Applied Kinesiology. This is a great way of finding out what is going on in your body through muscle testing. My daughter has now been diagnosed with Lyme's Disease and has also caught an Epstein Barr virus. Lyme's would probably not have tested positive on NHS blood tests as they don't use live blood and I have serious doubts that the EB virus would even have been considered as an possibility.
My husband has SCA2 but it is good to know that my daughter's exhaustion is most probably due to the above diagnoses. Hubby will be getting checked out soon so will be interesting to see if there is anything else going on for him. Perhaps there is another reason for his tiredness and Ataxia is only a part of what he is experiencing. If so perhaps there's a chance of improving things for him.
Essential Oil Girl,
You have certainly been slammed with a overwhelming amount of symptoms. Hang in there as it may take time to get a diagnosis.
All but your rash, I've experienced. Turns out mine is a autoimmune response to gluten. Yep. In 2008 I was bed bound. After I was finally diagnosed, it took about seven months for me to feel [almost] normal again. Today, I'm on the treadmill for an hour and will be able to function fairly normally except that my brain hasn't quite totally recovered from the damage. I still have some short term memory loss...I think.;-) I manage the neuropathy with some medication (Klonopin) and also take a muscle relaxant every night.
http://jnnp.bmj.com/content/72/5/560.full
There are quite a few of us here with gluten ataxia. It's certainly something to consider.
Take care!
Dear Esssential Oil Girl, A HUGE welcome to this site! You'll find many wonderful people on here for support and understanding. That being said, you may want to consider gluten ataxia (as Julie said) or Lyme Diseases and Epstein Barr Virus (as Krissy mentioned). I've read that sometimes ataxia symptoms can follow a virus, although I'm not knowledgeable in this. I hope you get a definitive diagnosis soon, as just knowing may help the frustation of this all! I have Sporadic Cerebellar Ataxia (unknown cause/ symptoms 24/7), diagnosed 13 years ago. I have no idea why I have this! My best to you..., ;o)
Hi
Just an idea and rather out there but the rash sounds like Shingles or maybe a related problem.
Bob
Thank you so much everyone!to krissy, I live in Pennsylvania. To make matters worse about 8 years ago I also had pancreatitis (not an alcohol issue!) idiopathic in nature, and have been chronic panc since. I also had early menopause at age 34 (sorry if to much info!) not shingles bob, but great suggestion. Gastro doc did not think gluten related. I did have mono at age 19, so I do have EBV floating around but they tested to see if levels were active the first time I was ill and they were not. I am actually going Monday to see a Lyme doc, I will get the full blood test run from a special California lab that none of my other docs seem to feel the need to run! If it is connected to an occurrence after a virus I am wondering if it will be the recurrent 9 months to a year of torture every time I get the sniffles?? That really freaks me out too!
Thank you all for your kind words and quick responses, I really appreciate it! And any and all other suggestions or avenues are welcomed!
Essentialoilgirl - your story is interesting to read. I was only diagnosed with "Spino Cerebellar Ataxia" as the preliminary diagnosis in 2013. Reading everyone's comments, it seems we all have slightly different symptoms. Mine seem to be similar to yours but have progressed rather rapidly, although I was diagnosed in 2013, I am under the impression it started before this. Around 2010 I was already becoming clumsy, knocking things over, gait walking etc.my MRI in 2013 confirmed the degeneration of the Cerebellum. It is now 2015 and I can no longer talk,walk,write,work etc. I am totally helpless except for my brain, which seems to be unaffected. I seem to tense up a lot but am still able to control it by forcing relaxation, my left (weak side) seems worse than the right side. I am not sure about your red bumps, they could be a number of things but don,t sound related to "Spino Cerebellar Ataxia".
I also have so many questions, the doctors can't pin point the exact causes of the problem. all their tests have proved that all is well except the MRI.
we're in London which is where we have found the ASK practitioner. I'm sure you'll find some in the US too as Diane said it has been medically recognised there. If you do take that route and have a choice of practitioners then do ask if any of them specialise in working on the brain - our brain is the fattiest part of our bodies, toxins are stored in fat so detoxing the brain cells sounds very sensible to me, given the nature of Ataxia. I'll post more info if my husband finds it helpful.
essentialoilgirl said:
Thank you so much everyone!to krissy, I live in Pennsylvania. To make matters worse about 8 years ago I also had pancreatitis (not an alcohol issue!) idiopathic in nature, and have been chronic panc since. I also had early menopause at age 34 (sorry if to much info!) not shingles bob, but great suggestion. Gastro doc did not think gluten related. I did have mono at age 19, so I do have EBV floating around but they tested to see if levels were active the first time I was ill and they were not. I am actually going Monday to see a Lyme doc, I will get the full blood test run from a special California lab that none of my other docs seem to feel the need to run! If it is connected to an occurrence after a virus I am wondering if it will be the recurrent 9 months to a year of torture every time I get the sniffles?? That really freaks me out too!
Thank you all for your kind words and quick responses, I really appreciate it! And any and all other suggestions or avenues are welcomed!
Hi there,
After many, many months I was diagnosed with cerebellar ataxia induced by autoimmunity for which I get IVIG treatments that are supposed to slow the progression. The drs. arrived at this diagnosis after it was discovered that I have an abnormal amount of a certain antibody associated with the big C. Thus I am checking also for a tumor lurking somewhere in my body. (no C so far) Soon, I hope to be getting a full body (dr. recommendation) PET scan. Apparently whatever the diagnoses (explore them all-- gluten, sca, the whole gamut....) lots of exercise and living well is key at the moment. Good luck and be well.
Why are you seeing a gastrointerologist? Has he/she done a small intestine biopsy?
Your story continues to sound exactly like mine.
If your gastro is not interested in testing you properly for celiac disease, try going gluten (GF) and dairy free (DF) for six weeks and see how you feel. Eat whole foods that are naturally GF/DF like produce and un-marinated meats, eggs. Nothing processed. Sugar free would probably help too. I use stevia sparingly.
Get some GF/DF multi-vitamins, sublingual B12 and D3.
You may be pleasantly shocked at how you feel with these changes! Wouldn't that just show those doctors?!
If this is the cause of your ataxia, you should fully recover as you're young enough. I am NOT a doctor, but a patient who had to fight for her life. I have my life back now. :-)
Julie
WOW , You are the first person I have met on here that has 99% same symptoms I have , I dont have the crazy part or the low tolerance to loud noise . but get frustrated very easy because I cant do what I used to do , but you work through that in time , adapt , adjust and overcome . Mine started with a car accident and have gotten worse , dozens of doctors al with no answers of how to treat it , I have had spine surgery , 5 taps , tried baclofen and zanaflex .
It has become clear that it is all due to spine trauma , I have been extensively tested for Lyme , and all sorts of stuff like MS , ALS , MG, and piles more .
My voice has been affected lately and at this point I cant talk above a whisper , I choke on nothing or water , have severe spasticity and some clonus , In addition to what you have listed I am curious if you have any of these other symptoms . intention tremors , blurry vision , ringing ears ( that gets worse with any movement ) especially turning your head , clogged sinus , numb face and lips , intolerance to cold , uncontrolled shivering when cold , toes turning blue , numb feet and hands , severe lower back pain .
Do your symptoms come and go in intensity ? For example : I will have a month where my legs will be super tight , and then that will clear up and I will start choking for a few weeks ,then that clears and I will start being very tired , and so on . I call it the "Symptom Du jour "
Just know that your body finds ways to adapt to this stuff and allow some normalcy to return .
Yes searcher, blurry vision right now is the worst. Everyday is a bit of a puzzle with some things being a bit better or worse. Hands and feet often feel numb but are not to touch mostly upon awakening in the am. lots of pins in needles feelings in addition to the constant buzzing. Sever lower back pain comes and goes, most of my muscles hurt severely, depending on the day it varies. I am taking Percocet sparingly but woke up this morning and chest muscles were so tight it felt like a vice to breath. Sometimes my chest muscles spasm so hard it forces me to exhale rapidly. My face will also feel numb sometimes, but again really isn’t as I can feel touch. As I sit and type this my muscles “pop” randomly all around my body, chest, then feet, the ugh, shoulder blade, and this constant feeling of my scalp muscles being pulled together for a few seconds and then released back like a rubber band, over and over for hours, then just stops for hours. The swallowing thing comes and goes, and liquids are my nightmare.
I’m currently on
80 mg baclofen
1800 mg gabapentin
5mg Valium
Ambien
Percocet for pain
Ugh
Neta, crossing my fingers no big C
Julie, I will completely go that route next if next tests reveal no insight
Alec, I am so sorry to hear about your rapid progression , without a clear diagnosis, things like that scare me the most. I worry about not being able to go back to my job I love, contingency plans on how to work from home if I must. The stress of these things doesn’t help I’m sure, but we have all been thinking of these things at some point I’m sure.
I hear you loud and clear and to let you know that you're not alone and we have to get through this 'friggin' disease with great courage..Much love to you...Ozzy:-)
