How can this be FND when I have a positive Babinski reflex?

[Babinski]

I am newly diagnosed with FND - as a diagnosis of exclusion rather than with positive signs. Grrrr. In other words, they have ruled out all the known neurological disorders via tests, so now they have decided that I must have FND. I am not buying it....especially when I have an unequivocal Babinski reflex, which Babinski himself used as a criterion to separate the hysterics of his day from the organically ill. I have other signs which also cannot be FND, including double vision and pronator drift. My neurologists have documented these. Yet, because I don't have ALS or MS or a tumor, they decide on FND. So, I have a question. Does a neurologist monitor this forum? If so, my question to him/her is: Are there any cases of a Babinski reflex being from FND? Everything I have read says that it ALWAYS is due to organic pathological damage to the cortico-spinal tract. Please advise. Thanks.

[andyglasgow2016]

FND is the diagnosis when they can't explain it due to clear test results

It's frustrating I know.

It's a big umbrella so covers a huge amount.

Just focus on what you can do rather than what you can't do.

[angelite in reply to andyglasgow2016]

Hi Andy,

If I may, I would like to point out that the neurosymptoms website we are all readily referred to quotes that diagnosis should be made on positive functional signs rather than normal test results :neurosymptoms.org/#/misdiag...

And that there should be no change in reflexes :neurosymptoms.org/#/functio...

I would also like to add that signs such as positive Romberg, Babinski, hyperreflexia, velocity dependant changes in muscle tone etc are all accepted indicators of a neurological rather than functional process.

So according to these rules, no one should be given this label purely for having clear test results or if they are exhibiting neurological rather than functional signs.

Angela x

[angelite in reply to angelite]

Oh, Andy,

Meant to add some 'tongue' info to your other post so will pop it here :

It's a bit of a mixed bag so there are some other problems included that may not be relevant to you :

webmd.com/oral-health/ss/sl...

I suffer from a dry, red, burning tongue at certain times of the month - it can be hormonal in some cases or due to nerve damage. I also have periods of acid reflux - it can cause tongue coating. I brush mine when I brush my teeth to remove the white coating. x

[Danslatete]

I have no reflexes in my feet and sluggish in my ankles and one knee.

It took me more than 9 months to regain functional movement in my left arm after a car accident following a fractured clavicle. My arm was hanging like a lump of meat. It should have taken a matter of weeks to heal so it was classed as fnd.

Frustrating but what could I do? I religiously did physio exersizes and tried every therapy possible to regain both movement and strength. I have got a lot of movement back but the strength is still poor after 12 yrs.

I also got a head injury but although the neuropsychology said there were definate deficits and even though there were other test that were conclusive I was also given a diagnosis of fnd overlay due to my dysfunctional family.

I am 1 of 4 children, the eldest is severely disabled, then me, then my younger sister who was adopted out due to my mothers circumstance at the time, then my younger brother. To me my life was just normal. It's what I knew as normal. I didn't know it was dysfunctional till I was an adult. They also cited my history of urine infections, nephritis and stomach troubles from my medical records.

I had E. coli that wouldn't clear up, and I was recently tested and found out that I can't eat both gluten and dairy which accounts for the stomach issues.

It saddens me that as human beings we are expected to follow a set pattern of recovery from injury and that doctors can find things to fit tick boxes to support their diagnosis.

I am now being tested for blood disorders as routine testing prior to a recent lumbar puncture showed problems with clotting, I have virtually no immune system working and I am chronically aneamic which is why I was being investigated in the first place, 8 years of aneamia before they did further investigation. So if I have had issues with my blood for years it could account for my slow healing. See not every human is perfect in its making.

I know fnd is a catch all for the I don't know what's going on here, but there are people who do go on to get other organic illness diagnosed. It's just a pity that you have to jump thru hoops but not constantly be at the doctor as it supports the fnd theory. It's a catch 22.

Don't give up hope.

I also have low b12 that I now take supplements for and it has alleviated some of the neurological pains. I was told they were satisfactory results but 265 is the very lower end of a normal range. I do feel so much better. Get online and see how proactive you can be at making yourself as healthy as you can be.

Don't let this label be a mill stone.

[Justdrea81 in reply to Danslatete]

Have they checked your intrinsic factor with your B12? Have you had any other vitamins checked. I ask this because after chasing this down for 6 months, my GI discovered that my Vitamin D was very low. Previously my neurologist had said that low B12 couldn't cause all the symptoms that it did. But now he's saying low B12 and low vitamin D could. I have some kind of malabsorption issue that seems to be the root of all this. I'm very gluten intolerant as well.

[angelite]

Hi Babinski,

I have hyper reflexes, positive Romberg test, spasticity, now no plantar response as opposed to normal downward prior to illness 3 years ago. During illness, my white cells were elevated for 5 months, my lymph nodes swollen for 2 but because an MRI ( without contrast, so not ideal for showing inflammation ) 2 days into illness was 'clear', I was ultimately put down as FND a year later. No further tests to find out why I was left with long term tinnitus, spasticity, balance, memory and concentration probs. Told EEG at 10 months was normal but notes say mildly abnormal with slowed waves. I feel that so much evidence is being ignored here because of the 'clear' scan. I certainly do not see my spasticity symptoms anywhere on the neurosymptoms website !

I have had a recent relapse due to UTI , that turned into sepsis, going through many of the previous symptoms of 3 years ago and leaving me with more spasticity and worse balance amongst other things. Had to fight GP tooth and nail for a referral to neuro. It seems that they were under the impression that I had already had all the tests possible ( 2 ! ) and that all had been ruled out so it was all down to FND !

Encephalitis was suggested at 5 months after illness due to stiff neck preceding movement disorder. MS was not ruled out as it doesn't always show up early on in the disease - only when sufficient plaques have formed.

To quote the neurosymptoms website ; 'diagnosis should be made on evidence of positive functional signs rather than normal test results' and 'there should be no change in reflexes'. Had to check my back for a 'village idiot' sticker when I left the neuro's office as 'FND' ! neurosymptoms.org/#

It seems that this category is being used as a convenient holding pen for some of us until further evidence comes to light. Problem is, once put in this box it is incredibly difficult to get a GP to take you seriously when further symptoms occur, plus we often appear not to get access to medical benefits such as physio ( I was denied by neuro ).

It appears to be being abused as a quick cheap way of offloading difficult to diagnose patients in some cases rather than being diagnosed according to the website criteria.

I wish you the best of luck and health,

Angela x

[Hastapasta in reply to angelite]

did u get a diagnosis yet

[Denise1968 in reply to angelite]

Hi Angela

I have spasticity in my right leg..Following an ms type relapse after C vax which took mobility for a while. Been two years now. I had a Second relapse of all the same symptoms 18 months on from c vax.. my right arm now feels different and I get intermittent weakness in legs and arms roving aches and pains and intercostal tightening. I recently had an MRI scan, no contrast..I'm awaiting results but if it is clear il be fnd'd just like you. What other symptoms do you get with relapse?

[Pacita]

Hi Andy,

I was diagnosed the same way. And have hyper left knee reflex, absence upper body reflexes, babies reflex and uvula tilted to the right. But as I've had two blood tests for MG, a normal EMG and nerve conduction test plus two normal MRI's been diagnosed as functional. As my main symptom is muscle fatigue, not weakness (although I suppose it is weakness if prolonged activity of over 5 rep's depending on the day) I don't think the hoover sign would be helpful.

[VivienneWaterworth in reply to Pacita]

Pacita, muscle fatigue sounds more like some kind of chemical imbalance such as low B12 levels, low Magnesium, low calcium etc. Even if they are in the lower half of normal range, they can be a severe problem for some people, especially B12 levels in the lower half of normal range.

I have unreliable reflexes...some way over-reactive to the point of continuing for up to 5 minutes, while some are almost non-existent. It means that if a doctor goes tap tap tap around my body, he will have no idea what my reactions are because all the over-reactive ones get mixed in with the almost dead ones.

I have seen a neurologist for 10 years or so. NEVER see a neurologist at 8:00am on December 27. His first cup of coffee will be getting cold on his table, he won't have recovered from yesterday's hangover, and he will resent having to get up so early, so soon after Christmas Day!

I've had lots of neurological tests since then, organised by my doctor and/or orthopaedics, including a sleep deprived EEG designed to trigger an epileptic seizure. It triggered a seizure but nothing showed up on the screen at all. If I hadn't seen it with my own eyes, I would not have believed it!

I have also had lots of CT scans and MRIs of my head and body over the past 10 years. Lots of quite interesting things, but no cause for FND symptoms. So I have FND, plus other neurological problems from compressed nerves in my neck, mid and lower back.

[Tewa]

I have similar questions. I don't understand why positive sign of a neurological condition beginning over 6 years ago, are not in my medical history notes. When I read the drs notes, I ask myself "what about this or that, which is not included.?" Then it has made it sound like I don't have anything. The pain management support counselor I went to for help, said it is called"cherry picking" where the filter(viewing the patient as having a psychosomatic disorder) is causing some drs to not document positive neurological signs..then can attribute to psychological condition.. And..even when a specialist has documented positive signs, it is not having an impact on making a clear diagnosis.

[cathys20]

Good Morning, I have no Babinski reflex, have not for years my feet simply do not move at all with stimuli being applied. Also do not have a definite diagnosis of fnd, but I have what most of you have. I have a movement disorder, dystonia, with possible fnd type symptoms at times, I love that.

I have said and I will say it forever, if the Dr. you are seeing does not think you are fitting into one of his pat diagnosis's you will probably get a fnd or a conversion diagnosis. They have no room in the diagnosis, for do not know. We have to fit compactly into their diagnosis options and pass all those type of tests if not, watch out, that is when the labels come and rude behavior may follow. Nasty stuff.

Stay strong, if you are in the states and you don't like what the Dr. is saying be bold and go to another one and another until you get one that is open and is willing to look and see who you are and what you are going through, not looking for a label to put on you. Praying for God's best for you, Cathy

[Thirza]

It concerns me greatly that so many people are being diagnosed as having FND on a daily basis. So many are being left to cope with this diagnosis by themselves and that can be devastating. As so many of you say so many clues as to what is really going on are ignored and so many of us are reluctant to see a neurologist again as the comments they make are so inappropriate and unhelpful. I believe many hereditary neurological disorders/diseases are being overlooked. For those of you with no reflexes, fatigue, leg/foot weakness, hand weakness, numbness, tinnitus , throat and swallowing problems check your wider family for similar symptoms. Some forms of hereditary neurological disease starts with fatigue and few outward signs that can be demonstrated. Slowly over the years other symptoms become more troublesome i.e. dropped foot and arthritic changes as the long nerves cease to work and the muscles are unable to remain stable causing stress on the bones of the extremities. The nerve conduction test can be normal in some instances as can having only very deep tendon reflexes. If a neurologist doesn't specialise in the diseases/disorders that are caused by a genetic fault then they are unlikely to diagnose them. Genetic testing is expensive and doesn't always lead to a diagnosis as there are over 60 different types. A minefield don't you think ?

[Tewa]

I can relate. I have had positive tests as well: VEP, 3 EMG/NCT, HLCA, MG titer, Endoscopies. BST documenting Oral pharyngeal Dysphagia, Dysarthia, anrthia, etc etc. Recently, a third episode of respiratory muscle weakness..this third time leading to acute respiratory failure with hypoxia. My neuro still will not give dx of Myasthenia Gravis, even though I was dx'ed in the past with MG, Mestinon prescribed.. I am hoping to see another specialist, an MG out of state. I refuse to give up as this is worsening. Keep on seeking help for yourself. Do research, take printout-outs to all drs appts. Advocate for yourself no matter the response. I fully understand your frustration. I wish you success.

[Hastapasta]

did you end up getting a diagnosis