Diagnosis finally!!

[Jaye75]

I am so relieved to know that "it's all in my head" is not true, symptoms for 6 years : gait/tremor/fatigue/pain/eyesight/hearing/headaches/memory/smell & taste & bowel issues.I have hammered all areas of nhs until I got an answer, but was really beginning to think it was a subconscious thing as I was getting nowhere with scans and tests everything was coming back normal...this has drove me crazy not knowing what was going on with my body and brain ..."have I got deep psychology issues", " is this real pain or am I imaging it", "am I a hypochondriac " thoughts like these were a regular occurrence. I am so relieved this is not all in my head and at last have an answer to all these horrid symptoms I actually cried when I received diagnosis.

[Jofisher]

we’ve all been there sadly glad you now know what your dealing with so now you can learn to manage it. You won’t always get it right but don’t beat yourself up over it just rest recover and onwards and upwards. Pacing is key so listen to your body learn the word no it’s ok your important to. We are so good at putting everyone before ourselves but that’s not healthy and don’t feel guily about it as your trying to manage life with this thing and people need to understand that. Good luck

[Denise1968]

Hi,. I'm pretty much where you were. Awaiting a diagnosis for a neurological disorder. My first attack was 18 months ago. I've had symptoms on and off since but 10 days ago bam! I've got another attack. My body is all over the place. Headaches, back pain, stiff painful right leg which gives way now and then weird sensations, weakness, tremors, pains down my right arm, stiffness, parasthesia in my right ear. I'm being checked for MS but I'm thinking it could be FND, how do you tell the difference? Did they suspect MS with you? I know Ms causes damage and fnd doesn't

[Bumblebee004 in reply to Denise1968]

Denise your symptoms are quite similar to mine, but mine are on the left side. Come and go with infections for me (sometimes I'm not actually sick but someone in my household is and I think my immune system is reacting). I also get like muscle spasm attacks, seizure like with lights/loud noise etc at its worst, but before and after similar symptoms to you. My legs sometime kinda give way too. I had lumbar puncture that was neg for MS and brain MRI last year was normal. Spinal MRI showed severe trapped nerves on left cervical/lumbar spine... of course neuros say this is irrelevant and I'm diagnosed FND 🙈 Hope you get dome answers pal.

[Denise1968 in reply to Bumblebee004]

Thanks for your reply. I'm still recovering from this attack. My first attack began 3 days after the COVID vax so I still think that is responsible for all this. Awaiting neurology appointment

[Cas85]

That's great Jaye! Do you mind sharing what the diagnosis is? My doc told me whether it's FND or small fiber neuropathy, they would treat it the same way (which I don't think is 100% accurate), but for me, it is vital to know if this is truly FND or something truly structure/neurological.

[Jaye75 in reply to Cas85]

Diagnosis is functional neurological symptoms as they dont actually call it a disorder which is silly as it obviously is as something is not working correctly did you see a neurologist if not you want to see one but it is hard to even get into the door with neurology I tried for 3 years, getting a diagnosis is an absolute nightmare 😞

[Jillymo]

It must have been a hell of a journey for you but at least you now know what you are dealing with and can find ways of coping and moving forward. Can I ask what tests they carried out to confirm your diagnosis ?

[Jaye75 in reply to Jillymo]

A lot of things have been ruled out over the years but the neurologist checked all my reflexes/strength/gait/eyes/touch/hearing/speech/balance and asked about my symptoms and also a brain mri to rule anything else out. It takes a long time to get a diagnosis and I wish you luck and hope you don't wait as long as me

[Jaye75]

I have had full spinal scan, brain scan (mri). Other scans included; cat scan, ultrasound, mris (6) for different areas, pet scan with iodine. I was tested for B12, folate and other deficiencies, I've had thyroid tests. I've seen rheumatologist, orthopaedic surgeon, a lot of physiotherapy for different areas of body, gynaecology, ENT specialist, bowel surgeon and lastly Neurologist. The only professional I didn't get to see is blood specialist (sorry mind gone blank can't think what their called) as I thought it might be a blood disorder.Neurologist had me doing lots of tests and asked a lot of questions, I was so worried it might be ms or early onset parkinson disease.

My symptoms list is quite big ill narrow it down for you;

Gait affected/unsteady with side steps/slow small pace

Memory/concentration/word finding

Tremor left arm and leg with weakness

Taste and smell affect

Eyesight blurry

Headaches/migraine left side

Burning pain in different areas/electric shock pain ....just pain every single day mainly lower back/neck/legs and feet as if I've injured myself but last a few days only

Absolute exhaustion after simple tasks

Sleeping I can fall asleep no problem but never go over 5/6 hours

I am awaiting to see a specialist physiotherapist who works with fnd atm.

I just want to be able to exercise without feeling like I've broken a bone or tore a ligament it's frustrating, and all the physio I've had in the past didn't help as it made things worse but when I told them this they said you will it's normal...I honestly thought I had dementia at one point and I was imaging all this as at times I've forgotten where I was even for a split second but thankfully this hasn't happened for a while now. Keep pushing until you get answers I was determined I wasn't giving up I was diagnosed with fibromyalgia 6 years ago but I knew something else was wrong so I do accept fibromyalgia now along with fnd it makes total sense to all my annoying symptoms

[Jillymo in reply to Jaye75]

I have various autoimmune conditions and seen by a hematologist for my sticky clotting blood. Like yourself I am also diagnosed with fibromyalgia.

I was diagnosed with a B12 deficiency and prescribed B12 injections. Instead of my Dr treating my neurological symptoms she refered me to a neurologist. In a one off 25min appointment where he did the push his hands up and down the same with my knees then I had to follow his finger with my eyes he diagnosed me with FND ! It wasn't discussed or mentioned during the consultation but was written on the copy letter to my GP. He requested a nerve conduction test and a MRI of my cirvical spine but had the audacity to diagnose before tests had been carried out !

[Jaye75 in reply to Jillymo]

Yeah that seems very short for testing and very few tests how he has come up with fnd without others factors just dsnt seem right, I think he seems to be thinking your B12 may of left you with neuro symptoms but that shouldn't just be assumed, can you not ask for second opinion and more testing ...infact I would insist as its your body and your the one dealing with this everyday and to be literally pushed I to diagnosis is wrong

[Jillymo in reply to Jaye75]

He flatly refused to listen to my B12 symptoms and stopped me saying he only wanted to know of my current one's. I have corrected most of those symptoms with B12 injections. Take a look at my long list of diagnosed symptoms which he didn't even consider.....

Hypoparathyroidism ( cant absorb calcium due to vit D deficiency )

Hypothyroidism

Antiphospholipid Syndrome ( sticky clotting blood )

Heart Failure, Strokes and TIAs

Degenerative Curvature of my spine

Fibromyalgia

Osteo Arthritis

Hiatus Hernia

Non Errosive Gastritis

Neuropathy

Yet in a short consultation this imbacile diagnoses FND ? ? ?

[Boeingbabe in reply to Jaye75]

Please get checked for lyme. You have every symptom.

[Boeingbabe in reply to Boeingbabe]

Thats for jillymo

[Bumblebee004 in reply to Boeingbabe]

I often wonder if this is the culprit for a lot of us with this diagnosis. I had a tick bite and huge erythema migrans with early lyme symptoms in 2019, treated with 3 weeks of antibiotics. Total recovery following this but then after covid vaccine last Jan have had a host of neuro symptoms. However tested neg twice for lyme. Issue is the tests are absolutely useless and docs dont believe in chronic lyme 😭

[Boeingbabe in reply to Bumblebee004]

Please see professor jack Lambert in Dublin. Years of misdx , he started me on meds without results he was so sure, got tested with armin labs- have antibodies with humoral responses against borrelia burgdorferi and ehrlichios. You dont have post lyme rather insufficient treatment im guessing. He's worth Every Penny.

[Boeingbabe in reply to Boeingbabe]

He also treats long covid. Both have v similiar symptoms. He told me lots of his patients misdx with fnd. Its gaslighting by neurologists

[Cas85 in reply to Boeingbabe]

So this was a result of a tick (what you had)?

[Boeingbabe in reply to Cas85]

I've travelled all over the world, so its likely i was bitten. By tick or even mosquito. The antibodies don't lie so I've had exposure to the bacteria and without treatment until now. It's neurological I'm guessing. Seeing Prof Lambert soon for follow up.

[Jaye75]

I personally would be looking into complaints procedure and demanding a 2nd opinion he clearly hasn't took all your health into account before even testing for other causes and then diagnosing you need to take this further as you could possibly not get the correct treatment and things could worsen

[Boeingbabe]

Jaye75. FND is another name for conversion disorder in their books. They try to dress it up. I dont believe its in your head one bit!

[Jaye75]

I've been looking up alsorts of research and whatever i can find, it seems retraining the brain of bad habits that have been picked up after a fall (this is what happened with me) can help.some symptoms...I will believe this when it happens ...time will tell!! How can a fall and cracked rib from 6 years ago cause all my symptoms and why would we make them up we dnt gain anything from suffering everyday, fnd can be caused by childhood trauma I havnt had any trauma so it does make me think why is this really happening hence why I thought it was all in my head but I definitely dnt believe that now.

[Boeingbabe]

Oh Absolutely Jayne. Its when they dont know why? you're having those symptoms that they label people. Did u get checked for APS which can cause episodes of hemiplegia and stroke like events? Even PoTs can cause tremors. Perhaps you fell because of low blood pressure which can cause our bodies to go into shock, resulting in your symptoms? I Do hope you improve with treatment. If you don't id be looking elsewhere for answers tbh.