Ataxia UK
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Hi I'm New

I've been having loads of health problems recently and the GP's weren't very helpful. As I have private health insurance I asked my GP to refer me and they suggested Neurology. I had MRI, Heart Echo, bloods etc and everything came back clear. I actually told the consultant I was "disappointed" as I really wanted a 'label' for what I was going through. 3 weeks later I've received a letter saying they have a late result suggesting I have Low Folate and have to go for more test of which kind I have no clue. I've came across this forum after googling and and I've discovered that I have 4 of the 5 symptoms of Episodic ataxia (not speech), but it suggests that this is hereditary, which doesn't ring true with my family. Please be Honest with me I don't mind criticism. Am I jumping the gun by self diagnosing with google? I'm kind of pleased to be having more tests and a possible label, as my symptoms dont always happen around people or as with the eye movements they aren't always as obvious to others as a plaster cast would be. My auntie (65) stated the other day to my dad that I (43) am the sickliest person she knows. I've been laid up with back spasms for over 10 days, I'm weeping as I type this. It's absolutely ridiculous to want to have a label for ill health but that's genuinely how I feel.

As a newbie I'm not sure if any responses will post here with a message to my email informing me of responses or if I just have to keep checking back, so please bare with me.

Thanks a lot

Bellibeau

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Dear Bellibeau,

I think you are absolutely right to get a label to what is wromg with you but do not self diagnose. Try to find an understanding doctor who will send you to the right specialists and will do the necessary tests so that you have a diagnose and the correct treatment. I hope you will be able tp get a diagnose soon.

best wishes

Isabel

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I do sympathise with you. Youre so right ,we all like to know exactly whats going on with the added reasurance of a professional. Hey Ho! Now back to the real world A friend of mine advised me to;

1.....join Ataxia UK.

2.....get a referral to one of the 3 accredited clinics.

Nobody can take your pain away but we can manage it. Remember how we did all those breathing tecniques in childbirth.....well, pain is pain, so it may help....when we have a sprained ankle we ice it and heat it....well an old nursing sister of mine said it doesnt matter where you heat or ice as long as the pt is reasonably comfortable......cold/hot compresses on the forehead, neck under arms groin .....it will soothe, reduce any swelling and you may like it.

Before relying totally on pills I like to relax and just enjoy the peace the brain loves.

We all deal with things differently and I have a way that works for me even though it may soind wacky Ibenefit AND AT THE END OF THE DAY THATS WHATS IMPORTANT.You will give3 youself permission to get to know your Ataxia....no-one else.

Keep talking on this forum. Air your frustrations, share your triumphs.

Enjoy and keep going.We all need each other and support each other.

DOTS01

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If you have Low Folate then it is possible you also have Low B12 - as they both work together in the body. When B12 is below 500 it can become a neurological issue if left untreated and is often connected to brain shrinkage. See the link below - scroll down for the signs and symptoms. Also look at the videos under the heading Films on the Menu - to see how serious a condition it is and so often overlooked at GP level and beyond. Your symptoms sound like B12 deficiency to me.

b12deficiency.info/signs-an...

You say your blood results were all fine - did you obtain copies of your results ? They are legally yours. Am talking with my Thyroid hat on and wondering if your Thyroid was correctly checked. There are over 300 symptoms connected to low thyroid and when low then so often the Folate - Ferritin - B12 - VitD are also low and not routinely checked by the GP.

I have Hashimotos - Auto-immune Thyroid disease - Crohns and a B12 issue caused by surgery :-) You can click onto my name above to read my edited journey to wellness - only takes a couple of minutes - and as I hurtle towards 71 I am fitter than ever having dealt with the ROOT cause. Just finished taking a yoga class !! Not sure if my Ataxia is caused by Low B12 - Gluten or Hashimotos. So am hitting all three !

Happy to help.

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Have you been tested for Coeliac disease? I have balance issues and this has been diagnosed by my neurologist as coeliac ataxia. Sheffield I am guessing would be the centre to obtain appointment. Prof Marios is very clued up on the things that gluten can do to our bodies. My neurologist diagnosed me with coeliac disease last December I have silent coeliac. I had no symptoms that you would expect to have regarding gut function.

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Hi Bellibeau. Sorry to hear about your problems.

May I please ask about your diet? If you could be as honest as possible I would appreciate it. Thankyou

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Hi, my diet isn't the best to be honest. I eat peas, carrots and turnip whilst having a 'roast dinner' but that's about my limit with veg and I rarely eat fruit. Some days I only eat 1 meal a day which tends to be lunch-time as I live alone and don't really cook anymore, other than a batch of bolognese which I freeze, or a family member will feed me if they make a 'roast dinner'.

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Hi Bellibeau, I too am sorry to hear about your problems. I had problems with doctors as well. None were helpful, and I can barely guess how many neurologists I went to besides my GP. I finally was forced to self diagnose, and then had it confirmed by a psychiatrist of all people, as ataxia. So I can totally relate to your frustration. I was going to post here about a couple things that helped me, but was turned down by the people making that decision. One thing that has really helped me with pain is a natural enzyme called Serrapeptase. As we grow older, our bodies produce less of it, so taking the supplement has really helped me. What the enzyme does is regulate the inflammatory response in the body. Inflammation is what causes pain. There are no side effects as it is a naturally occurring thing in the body. I've found that the brands Nova Nutritions and Doctors Best are better than others -- maybe more "pure". You can take it up to 3 times a day, probably best at mealtime. It may work right away or take a little time. All I know is that it has helped me a lot. Then depending upon the kind of pain, either ice or heat helps a lot. Ice for neuropathy, heat for muscle spasms or cramps. Doctors here in the USA want us on drugs, but I've found that I get a rebound effect from most pain meds. Just an fyi and hope that this helps. Patti Tilden

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Hi Bellibeau, I don't have a definite diagnosis either, drives me insane not knowing. I have tremors, fatigue, muscle twitching and spasms, tingling and numbness, to name a few. My spasms in my neck are due to dystonia not sure about the rest of my body though. My gp now thinks I have peripheral neuropathy also. I think you need to find out why your folate is low, that may hold some answers for you. Wait and see what tests they do next for you and go from there. Keep a list of all your symptoms to show them, I do because I always forget something. I did the same looked online for a diagnosis because I needed answers and I only came up with three things which matched my symptoms. In my experience gp's do not know a lot when it is a rare disease. I think a lot of disorders have the same symptoms so it is hard to know what is wrong. I had eye movement too and now they have gone just about, not sure why I had them, I seem to have what I call flare ups. I also have tarlov cysts, very painful in my case, but doctors dismiss this. Hope you find answers

Suzie

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Can I just say "thank you all so very, very much" for taking the time to respond to my message above. Again, I'm weeping and it's just because I'm able to type out my appreciation and still ask questions and spill my feelings to you all.

I was at hospital yesterday after receiving a recorded telephone message 2 weeks ago telling me to attend. I had NO Idea what the appointment was for and when I turned up I found that my Dr's surgery had referred me to have the same tests that I had already had via private health insurance ???? Where is the logic, we have an amazing NHS but this was a waste of an appointment and had I been informed of this appointment in advance I may have used it instead of going private (probably not, but maybe) and I may have also have saved myself £167 which is how much I went over my budget on the private insurance which is capped. Anyway,... when I came out of the hospital appointment I rang my dad to let him know what had happened and he obviously wasnt listening properly to what I was telling him. I have to say both of my parents who I'm very close to have been highly upset at the state I've been in with my back spasm for the last 2 weeks but..... as he wasn't listening properly he said "So Its All In Your Head, your bad back and everything is In Your Head"!! GUTTED and DEVASTATED doesn't even come close. Just One of the reasons I NEED a label and treatment.

When I go back to the nurse for further blood tests this week is there anything that I should be asking her to test for? She will only request tests for what the Dr requires but if they aren't looking for something that one of you suggest I will request to speak to the Dr and ask them to test for this also. I have an appointment with the Dr a week or so after the bloods are taken and I will come back at you all for advice on what to ask her once they have the results, if you don't mind. I won't ask now as I don't want to overload this tiny little head of mine. 😉

I hadn't realised how much I had been bottling all of this up or trying not to think about it and it's only now I have realised for how long, and I can't thank you enough for being here. As a rule I'm a very un-needy person who doesn't discuss my personal worries or concerns, so thank you all again. 👍👍👍 I'm giggling now as my luck will turn out to be "not ataxia" again that sounds ridiculous doesn't it. 🙄🙄😀😀.

Hope you are all having a fairly decent weekend if not a Great one. 👍👍

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Did you manage to look at the link I posted above for you about B12 Deficiency ? Regarding tests - I would ask for B12 - Folate - Ferritin - VitD also an Iron Profile as well as a Full Blood Count. Ruling out these as possible culprits is important as they are the pillars of our health and rarely tested unless requested ....

If all the above results are low then I would go for the FULL Thyroid Profile - TSH - FT4 - FT3 - and anti=bodies TPO and Tg.

If you are able to have Private Testing - kits can be sent to your home for finger prick testing or otherwise. That way you will have all the required tests and not be at the mercy of the NHS and their inadequate testing.

thyroiduk.org.uk/tuk/testin...

Thyroid Profile 11 with Blue Horizon is very popular on the Thyroid UK forum where there are over 63,000 members :-)

Do you have the results of the tests at the hospital ? - you are entitled to have all copies of your test results with ranges so you can monitor your own health.

You could try Magnesium to help with muscles spasms ....

Hope you soon feel stronger.

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Hi Marz, the information you have given me in this reply is much more understandable to me than reading official pages as it's in laymans terms and doesn't overload me with gobbledygook. I'm going for bloods tomorrow so I will certainly check and ask for the tests you have suggested. Thank you. 👍

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The B12 Deficiency link has a list of signs and symptoms - including ataxia. The whole website is written to help people understand - compiled by other sufferers with B12 D. I think it will help you discuss things with your GP - information is power 😊😊

Hope all goes well with your Doc ....

Don't forget to ask for copies of all previous tests with ranges - legally yours 😊

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Bellibeau, I certainly can empathize with your predicament! I'm so sorry that you are having to go through this. It took 5 years of me dealing with all kinds of symptoms, that were gradually getting worse, before I was diagnosed with Ataxia, and then, with more symptoms worsening, another two years, before I was diagnosed with the neuro-degenerative disease, paralysis agitans ( Parkinson's ). For five years, I lived with knowing something was going terribly wrong with my body. I had no idea what it was. We lived in a small town, with only a GP. There were no neurologists in town. At first, I had trouble with smelling and tasting, then tremors with my left hand primarily. Then my balance seemed way off. I couldn't walk a straight line, if I tried. Around the third year, tremors started in my right hand. I got to the point that I couldn't hold a screwdriver and screw a bolt in with either hand. Then my legs started getting stiff at times, and I had several falls. All these things were reported to the doctor. He blamed unknown benign essential tremor, for my tremor. I had 5 falls in my fourth year and numbness in both legs. The 5th year, I had a terrible fall, where I fell face down on the street pavement. I was having a very difficult time walking. I was bleeding from my head, with a big hematoma, from that fall. I had lost consciousness and had a concussion, with blunt force trauma to the head. The Dr. put me through numerous tests, but still not a hint of a diagnosis. By that time, I showed the Dr. that my hands, fingers, and feet were jerky when I moved them up and down. Finally, that year, we moved to a bigger city, where there is a regional hospital. I saw a GP, and he had me tested and do some walking. I was diagnosed with Ataxia, and referred to a movement disorder specialist neurologist. After checking my history for the previous 6-7 years, checking hospital records, MRI's etc and testing, the neurologist diagnosed me with PD. So, I'm sharing this with you, so that you know how frustrating it was for me, for a number of years. I just wanted to know what was wrong. I did not know anything about Ataxia or neuro-degenerative disease until I was diagnosed. Then I saw where the symptoms that I had for all those years were confirmed, by the neurologist, as being Ataxia and PD related. I have both resting tremor and essential tremor, for instance. Levodopa (Sinemet) has helped my tremors greatly. If only I had been on that medicine 5 or 6 years ago, it would have made my life a little easier. These neurological ailments can be very difficult to diagnose, and sometimes it takes a long time. So, I am not blaming anybody for anything, rather I'm stating that because of the nature of neurological disorders, meeting diagnostic criteria is not always a quick, sure thing. My recommendation would be to get several movement disorder specialists opinions on what ails you, and try to be patient.

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Hi,

I forgot to say earlier that I also take extra vitamin B-12 and folate, which both seem to help with ataxia symptoms of pain. Also, even though I do not have gluten ataxia, I recently had some bread and noticed that my neuropathy pain was worse. No more bread or gluten for this kid, not that I was eating it anyway.I am a label reader, so am careful what I put in my body. That does help. Also, magnesium and potassium help with muscle cramps, as does heat. I keep a heating pad next to my bed.

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