Looking for info

Hey guys,

Just wondering, when symptoms are described as variable and/or changing, what is meant by this.

I find myself in a curious position where neurologists believed i had early onset Parkinson's as that's what my symptoms mimic I guess. Walk, rigidity, slowness, decreased sweating, blood pressure changes when standing, tremor down one arm... But mine never changes, its been there slowly progressing for eleven years plus. Every day, every night it's the same.

Now in the end it was decided its not Parkinson's because of the results of a DaT Scan, but even so the boat is still out on this as I'm still having to do the physical assessment for that horrid disease. Of course I may just being adding 2 + 2 for 10 on that.

Thanks in advances

BertieFish

7 Replies

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  • Hi, BertieFish, you are right thinking that "variable symptoms" change in time, sometimes they are severe, at other times they are mild or even non-existent. Accordingly, a person's degree of disability may oscillate between severe and mild. Variability of symptoms is a hallmark of FND, since there is no physical damage to the nervous system, and only the way of signal communication suffers (or so the doctors believe :-) ). Knowing this kind of distinction between FND and organic conditions, one may think that, if the symptoms are steady, this means it is not FND. However, the experience with many patients show that neurologists would rather think a patient has a rarer form of FND with stable symptoms, than he or she has a rarer form of, say, Parkinson's with clear scans...Do not ask me why it is easier for them...just be ready. Cheers. Svetlana.

  • Hi, Bertlefish, My symptoms would also be consistant, and definitely have been advancing over time. I have much of what you have listed here and unfortunately very much more. You can read my other posts. I have had this since 1998. The only reason I have relief from constant symptoms is the medication I take. Without them, I am totally unable to speak, walk, or move hardly army of my muscles on my own. My hands will be in a fixed position and also everything else. My face will pull hard to the right, I have eye closure, that I am unable to open, I have tongue pulling to the right, and have what we now have come to know are dystonic storms. This thing is a monster, I praise the Lord everyday for the medications that give me somewhat of a normal life. Without them I would be in an almost vegetative state with just my mind working. Thats how I was the first two years almost, and at times when the symptoms break through, I will find myself there again.

    Yesterday woke up not myself, no voice, walking only little off balance steps, still made it to church, and to a senior ministry I am involved with. But by the time I got home, was dysfunctional, could not talk, could not walk, body in total spasm. I slept much for the rest of the day. My loving husband finally carried me into bed, I remember not much of anything after getting home late in the afternoon.

    I tell these things to only encourage each of us, it is one day at a time, I thank the Always Good Lord for the days when I am functional, and pray I always praise him in the tough times as well. Hope this helps someone. May God Bless each of you today.

  • Hi Bertie,

    Apart from the first few weeks of severe transient various neuro symptoms the problems I am left with are stable and only worsen with muscle overuse and fatigue.At 5 months I was told suspected Encephalitis,at 1 year I was put down as FND.My muscle symptoms do not appear anywhere on the neurosymptoms.org website-they behave exactly like spasticity,co contraction and flexor spasm.When I asked the neuro about the cause of my muscle stiffness/weakness he blanked my questions as if I had not asked.I also asked for a physio referral to which he shook his head.UK guidelines for suspected Enceph are :MRI,EEG and lumbar puncture.I was given outpatient MRI 2 days into illness which was pronounced clear( which I have since learned is not unusual in early Enceph inflammation )and thus cast over to psychology.EEG was not performed until 10 months after the illness,way too late for symptom detection and lumbar puncture never even mentioned.White cell elevation for 5 months and lymph node swelling for 2 months were ignored as evidence in the final diagnosis.So I am at a loss as to why my GP only offers Psychology as treatment( they signed me off long ago,as they felt I had a physical illness)in the face of other positive neuro features.

    I do not consider FND a 'diagnosis' but rather a category that it is convenient to put us in when doctors make mistakes,fail to follow protocol,have insufficient knowledge or simply cannot be sure of the cause.It also appears to be a cheap option as further tests and treatments are often denied and the condition deemed purely psychological.I have done my research,I am 99.9 % sure of what I have had and of the resulting damage-I just do not know the causitive agent.If you feel that FND is not a good enough explanation for your problems I would suggest that you do your own investigations.Best of luck, Angela x

  • Hi again,just found a link to Dat scan,hope it helps. parkinson.org/Patients/Pati...

  • Thanks for replies, not been on here for a while. Been to see a consultant in rehabilitation, he said I have PD 😐. Recently been discovered a freckle on my retina, suspected eye cancer. Got a follow up next month to talk about laser removal and further investigations. I told them my vision was wrong but drs insisted I was malingering. Unfortunately I was right.

  • Hi Bertiefish,

    Thanks for your update-so sorry to hear this worrying news. So upsetting when potentially crucial symptoms are dismissed by disinterested doctors.At least now you can get the appropriate diagnostic tests and treatment.

    Wishing you all the best, Angela x

  • Hi , I too have had a dx of Parkinson's disease for six years. My neurologist retired so had to go to a new one and he says I don't have PD but FND instead. Weird as sinemet really helps me. I have dystonia too for which I get Botox.it was the first symptom after I had a spinal cord injury and resulting fusion but left with myelopathy . My progression has been very slow , I exercise 8 hours a week ... New doctor wants me to go in hospital and get me off all my meds..I just don't get it at all. In canada we don't have Dat scans . I can go to another neurologist however this last one is head of a Movement Disorder clinic so no one will question him.....not looking forward going off the meds

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