Symptoms

[Maro63]

Hello,I got my first symptoms back in 2017, l was told that I was getting older and that's what it's like.

Skipping forward to April 24, I had terrible pains in my feet and ribs. The pain was affecting me really badly so I went back to the doctor.

I was referred for a CT scan on my head and had some blood tests done. It revealed that I had a shrunken cerebellum and an anomaly in one of my bloods.

I have had gradually deteriorated due to sensations around my whole body.

These range from crippling cramp like pains which can occur anywhere and at any time, tingling sensations from my face down to my feet, losing mobility in my left leg, not being able to control the strength in my hands ( I either break things or cannot deal with them through lack of strength), not being able to control my bladder as well (thankfully I haven't had an accident yet) , migraine type pains in my head or auras, and sometimes massive tremors which can be very exhausting and usually leave me in pain. I have noticed that when I get the shakes, l can calm them by not fighting them. It works for me but l don't know if it would work for you.

I have yet received a formal diagnosis of FND.

I have had several MRI scans and EMG , apart from the cerebellum problem everything seems to be as it should.

My history is pretty good up to the onset of this. I have been lucky enough to have had full employment since leaving school and I have worked for 45 years. This has floored me and like so many others I take 3 types of painkillers and quinine too but no real progress as to what is the root cause.

Anyway that's my input so far.

[kev60]

hi, I was diagnosed in 2019 (dec) but it started in 2018 with an adverse reaction to Gabapentin which I was taking for nerve pain (shoulder) . I have problems with walking, talking and memory but one month after I had stroke like symptoms (3days hospital) had pain abdominal, chest and back. I got these checked out turned out apart from FND I was diagnosed with emphysema (COPD) also GORD and osteoarthritis of the thoracic spine. I to remember the doctor looking at my notes seeing I was 60 and said it was probably old age, I also worked over 40 years rarely visited the gp but since it started all my days out are either hospital or gp’s . I find you have to tell the doctors what’s wrong and insist (politely) that they help. I was sent for a few scans on my spine and apart from the osteoarthritis they found I had an enlarged aorta just above the heart and while scanning that they found another enlargement in the aorta in my abdomen. I went from working to disabled in an instant and didn’t even notice myself others had to point it out. I think my body was saving this up for me now have so many issues latest ones are chronic pain and PLMD (limb disorder) and hearing loss. FND has a lot of symptoms but you need to check things out as it maybe something else, I have tremors in my hands because of family history was sent to see if it was Parkinson’s but it was put down to the FND. I hope you find the answers you need. Kevin

[bookish]

Hi, given the cerebellum and the neuro symptoms, I'd be wanting full testing for gluten. A basic NHS coeliac test needs to be first (assuming that you eat wheat gluten), but this misses many people, so a clear test doesn't mean that you are ok. There are other tests, or you could look genetically, or after NHS test done (if clear) you could just quit gluten completely. I am grain free, as wheat gluten alone was not enough (I react to corn gluten as well, and others). No-one ever suggested it, I tried for myself and it made such a huge difference. Years later a neurologist said I'd done the right thing! I also had a folate and B12 deficiency so dropping the gluten didn't fix everything (the gluten damage can cause those and there are other causes too). What were your folate and B12 results and are you vegan/meat avoiding or on any other medications/supplements? Cheers

[Maro63 in reply to bookish]

Hello Bookish,Went to see GP yesterday and had a good chat about all my symptoms, results etc. Had a long chat and I have been referred to a specialist in ataxia as my gait is awkward. It's funny how you mentioned gluten as I noticed the consultant is a specialist in gluten ataxia too.

I am booked in for more bloods next week to check out folate and B12 levels too. Should be interesting when they come back. I also asked about going back to work, but that looks a long way away at moment.

Thanks for your response.

[bookish in reply to Maro63]

Hope the gluten/ataxia specialist is useful. Gluten is responsible for far more than we might think or expect, so if discounted by them, don't give up too easily!

Bear in mind also that you can have a B12 or folate deficiency at cellular level with any serum level - low, middle or high, so ask for a copy of your results including full blood count, as there can be clues that need following. Again, you cannot rely on this being an easy diagnosis although it can be very straightforward. Many doctors think if you have adequate in the blood then that is all ok and I know from personal experience that it is not reliably the case. I am on B12 injections and take a specific form of folate and am getting better! If you are already taking any oral B vitamins, you will have to try to explain, as they could well make your serum look ok but not fix the neurological damage.

Best wishes