New here and confused and irritated. I would like to share my story and timeline to see if anyone else has had the same thing. Sorry if is really long.
My symptoms started about 3 years ago with my head fogging up occasionally. As this kept getting more and more i started losing my sense of smell. By January 2013 i began getting stiff on my right side. (Every symptom I tell you only affects the rights side, left side is 100% normal) by may I started a faint tremor ( was told not diagnosed with essential tremors on my left side at age 14).
In June my wife and I had moved back to our home state to help with family. Starting in August my head was almost completely fogged and inwas progressively getting more stiff. My smell had been almost completely gone minus smelling certain ingrediants in foods. It was so far gone i couldn't even smell a skunk. My stiffness was now on my neck, shoulder and chest area.
Instarted having difficulties with my right leg in October. My tremor had slightly worsened and my foggy head was now full time. This is when I decided to see a doctor. My testing started in December. So far I have had an ultrasound on my thyroid, MRI of the brain and spine, EEG, and tons of blood work. Everything came back normal. I was even tested for the rarest of metabolic disorders.
Started seeing a neurologists in Jan. 2014. I was then told it was young onset parkinsons. Next visit I was told it looks like CD. I said ok what do we next. The Neuro said lets run more test. I then was able to get into a movement disorder specialist. She said it looks like FND and gave me the Neurosymptoms website to look at. At this point my wife and i were relieved it wasn't PD, the website didnt offer any evidence of FND for me.
This will bring me to today with a list of symptoms and what i have been told so far. I have seen 3 neurologist. One said CD, one FND, and the last said he doesn't know. I have seen 2 neuropsychiatrist. One said it was organic (parkinsonian type issues) and the other said he didn't know. However there was no evidence of stress, anxiety, or depression causing these issues. CD out the window.
Symptoms now (again only affects the right side. Left side is 100% normal)
Hard time understanding
Hard time talking sometimes
Loss of smell
Loss of balance
Stiffness starting at the base of the skull running down the whol body
Problems swallowing
Slowed movements
Abnormal gait
Right arm doesnt swing
Charlie horses in my toes
Resting tremor right hand and wrist
Poor memory
Tremors of the jaw and around the mouth
Very poor sleep
Only dream about once a month
Light drooling while awake
Muscle spasms (majority on right side and a few on the left)
This is all I can think of now. I'm sure I missing one or two.
All these have been progressing slowely with no stopping. I have a day or two when the symptoms are not as bad, but never go away completely. My physical therapist also thinks it is PD, but no one cares what he thinks except me. He worked on me for 2 hours a week for several months and has seen all my movment issues.
Any comments on whether anyone thinks this is FND or knows someone with FND that has these same issues? I was told by a pathologists it could be functional parkinsonsim which apparently more rare the PD itself. Any help is welcome.
Sorry for the long post and thank you for your time,
Lee
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LeeMcConnell
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Ive read your message and can really sympathise with you. Whilst our symptoms aren't the same, I think we have some definite similarities. I'll tell you my story and see what you think?
I'm 32 now, married with 2 young daughters. On 24th January 2012 (the day after our wedding anniversary) I was simply walking across the kitchen when I had a severe shooting pain down my right leg, I was rushed to hospital with suspected Claudia equina but mri of spine was normal. I could hardly move right leg and was unable to walk. Slowly improved over following weeks for episode to repeat. Then my right arm became effected.I began having absence seizures, pain at the Base of the skull, difficulty speaking. The waiting list for a neurologist was so long we paid for a private consultation, was told there and then he thought it was fnd. Was left rather deflated with the diagnosis. Like you at onset was not stressed, depressed etc. An mri of the brain later came back normal so fnd diagnosis confirmed. Since then I have a tremor, and find making a fluid movement with my hands causes jerk, so putting a key in the lock for example is particularly difficult. Speech is a totally pointless at times and I have daily fizzing, popping, twirling in my head.
Like you, I am 95% right side effected. Although in recent months my leg has been a lot better but other things are worse.
Anyway, sorry for going on. I hope I may have helped in some way.
Thanks you so much for responding. The one confusing thing I have to ask is do all people with FND have episodes? I have read a ton on the matter as well as blogs. It seems almost all have episodes.
I would love to have a clear day. Even if it was for only a couple hours. My symptoms didn't start all at once. They started of small and are gradually progressing. The only symptom that went away was i had bad muscle spasms for a couple months and now they are minimal and smaller, usually effecting a finger or bicep.
I have been told if I accept it i will feel better. I have tried accepting it, but there is something in the back of my mind saying there is something more to this.
I really appreciate your help and will keep you posted. My Drs. have stopped helping me at this point. My last resort is getting into Barrow or Mayo clinic in Arizona. Hoping my PCP will get me the referral.
Thanks you so much for responding. The one confusing thing I have to ask is do all people with FND have episodes? I have read a ton on the matter as well as blogs. It seems almost all have episodes.
I would love to have a clear day. Even if it was for only a couple hours. My symptoms didn't start all at once. They started of small and are gradually progressing. The only symptom that went away was i had bad muscle spasms for a couple months and now they are minimal and smaller, usually effecting a finger or bicep.
I have been told if I accept it i will feel better. I have tried accepting it, but there is something in the back of my mind saying there is something more to this.
I really appreciate your help and will keep you posted. My Drs. have stopped helping me at this point. My last resort is getting into Barrow or Mayo clinic in Arizona. Hoping my PCP will get me the referral.
I have a friend who was diagnosed when in hospital with Stiff Persons Syndrome, she now has PD. There are some videos on You Tube which show some of the symptoms.
I was given a med trial to rule out stiff persons syndrom. It made since at the time to to my muscle almost freezing from stiffness. The meds did not work so that was thrown out.
I will definitely check out those videos and see if maybe there was something we missed. Meds don't always work the same on people. Maybe those didn't work on me? Thanks for responding.
I am pretty confidant your fnd diagnosis will continue. Just from everything that I have read and heard. I have said this so many times people are probably tired of hearing it, but I believe what you and most of us have is a yet undiagnosed type of movement disorder. I have been diagnosed myself with dopa-responsive dystonia and possible fnd type symptoms relating to my movement disorder. Best diagnosis I can hope for at this point and can live with it. I have responded very well to anti-seizure drugs. Very well. Also take sinemet, which is where the levodopa comes in. Without my anti-seizure meds and sinemet, I am in a almost total vegetative state. Locked in my body, with only my mind moving. And yes, much of what you say makes total sence as far as different symptoms. Each of us is a little varied, but share many similarities. The problem with us being diagnosed easily or at all, is that we don't fit into their neat little boxes of what we have. That is why I think we are a long way off from ever having a clear diagnosis of this movement disorder. Keep searching for the right Dr. I do not know if you will find any help at the Mayo. But every chance you get, share with what you have learned from others with this condition. I have been blessed in having a very supportive family, and Dr.s. I will pray for you. God Bless, Cathy
Thank you for your response. I am happy to hear you have such a supportive team and meds that help.
I will not give up on searching. It's been a 50/50 draw on the diagnosis. I have not officially been diagnosed with FND. I have been told is PD by half the people I have had contact with and half say FND. I have even spoke to a pathologist on another forum. We have been discussing my issues for several months now. She told me that the only way to confirm Its not FND is by doing a L Dopa challenge. No one seems to want to do that.
I have spent a year and a half researching FND and nothing seems to fit. I will accept what diagnosis I am given as long as they take all the measures to ensure its not PD.
My Neuro has told me I have 8 different diseases. I was told my symptoms are EXACTLY like PD symptoms and was offered to go on medical leave. Next visit it was Wilson's disease, the conversion disorder.
I believe the reason is my father-in-law has PD and that has shown up on every report. My neuro and the MDS i saw were on the same office and are friends. Those are the only two they say FND. Out of the two neuropsychiatris i one said PD the other said i don't know. The other person that said PD was my DPT. He worked on me for 12 one hour sessions and said it is PD.
I'm begging my PCP to give me a referral to Mayo or Barrow in AZ. Something isn't right and none of my neurologist can tell me why it's not PD it just isn't. Sorry for this long post but I am happy you responded. I can assure you there is some not yet know movement disorder that we or others may be suffering.
Hi Lee, I think it is important to remember that MRI is not God,even though many neurologists seem to use it in this way.There are many things that often do not show up on this;inflammation in encephalitis,MS in early form,alzheimers etc.Structure often shows abnormalities that are attributed to natural aging of the brain.If you read about Parkinsons it states that it is a physical diagnosis and no imaging can confirm it.A 'clear' MRI does not rule out a multitude of illnesses.You could maybe ask your doctors why they feel it is functional and why an L dopa challenge would not be worth trialling to rule Parkinsons out.Take care x
I never depend on an MRI, unless a a brain tumor appears. I have also had the pleasure of educating myself for the last year and a half.
I have asked every doctor why they feel it's FND and not PD. None of them tell me why. They always say it's inconsistence. When I ask them how is it inconsistent, they say it just is.
In every drs note they say something about my father in law. In has dawned on my that they more than likely think I'm making up these symptoms. My symptoms starting one year before his diagnosis and the psychiatrist said im 100% normal.
They won't do the L dopa challenge, because they say it won't do anything. They don't know till they try.
Hi Lee,I am so glad you have spent time researching and are well informed-we all need to be.Knowledge is power as they say.I have just been on a diseases that mimic Parkinsons website-some interesting stuff there-I am learning all the time!I can only suggest that you keep going at them from the let's rule some things out angle.I really hope they will relent and do this for you.
Thanks for replying! I try to find as much information as possible. I am making a list of all my symptoms and check marking which ones are marked under all the FND sights and PD sights.
I have also been looking at MSA which I have a lot of the symptoms for. If you don't mind my asking what website are you looking at for the PD mimicking illnesses? I am a sucker for learning.
I am waiting to hear from my insurance to see if I can go to mayo. I found a dr that specializes in PD and FND. Fingers crossed.
HI Lee,I did a general search for parkinsonism and was looking at the aging care.com website.I remember researching all things Parkinsons deeply whilst ill but have of course forgotten a lot of it as my memory is now pants!I have experienced some aspects of this myself,amongst some dystonia and myoclonus fun during my illness!(theres a post somewhere with the details if interested )Thankfully the worst of my symptoms were a transient part of what appeared to be inflammation.I reckon my dopamine must have been through the floor!Didn't have depression though-my head felt as always,just marvelling at this body that was busy doing its own thing!With regard to the fluctuation of symptoms,my main ones are always present,with muscle fatigue worsening with increased activity as expected.I feel that I am in a fortunate place-I am 99.9% sure of what I have had and of the fall out I am dealing with now-I am just unable to name the causitive agent.If it were not for freely available info online I would be a much more worried person.I can now make peace with my condition even if not with the way I was treated but I can remember how emotionally exhausting the fear of the unknown is. Weirdly as I am typing there has just been a news flash regarding findings of lewy body dementia in Robin Williams-even the rich and famous can fall through the net of diagnosis.I wish you a fruitful and informative appointment and look forward to hearing how you get on.Take care,Angela
Lee, I'd suggest joining us in the Facebook group and discussing there as quite a few have similar symptoms. If you go to the Home page of FNDHope.org and click on the Join Facebook button and admin will contact you. We also have plenty of members in US states who can advise on good practitioners.
Lee, Symptoms of FND/CD can varies from person to persons it very much sound like to me that you have got a type of FND/CD. What I find that helps me is to try and keep as busy as I can for as long I can manage then rest. If no one has explain what FND/CD is it's when the brain tells your nerves to do something and then on it's way it gets scrambled that is why most of us have some sort of Seizures on a day to day basis.
I own a bakery with my wife and mother in law. Staying busy is not an issue lol.
I have read extensively on the non epileptic seizures, paralysis, and limb numbness. I have never had any of these. I know that is not the reason I can say it's not FND/CD. I am just saying it just all doesn't fit.
My wife is all for FND and believe me i would rather have FND than PD. She also believed it was FND. As time has been going on and the way the progressing is, FND no longer fits. I have not seen any evidence of FND progressing in a parkinsonian type way. I'm not saying it's impossible, just i can't find any evidence. Even the pathologists I have talking to for the last 6 months says that doesn't seem like FND.
Most reach a point that they do not care what the illness is called or how it gets fixed just that it does. Many doctors think patients should be relieved because they don't have PD, cancer, stroke, etc. But relief only comes once there is a relief from symptoms. People want their lives back.
Have you discussed with your doctors the possibility of an overlay. It is not entirely uncommon for the body to develop functional symptoms after the onset of an organic illness. Also, we are finding more and more patients who have responded favorably to sinemet. I don't think this is a drug doctors normally want to put patients on especially long term, but it is definitely a conversation worth repeating. Perhaps best to discus with your physician who is leaning towards PD. Another thought for you and your physician is yes Sinemet is used for PD but it also has other uses. Perhaps a low dose would help your brain send and receive signals and help your brain "re-learn" correct movement.
-Any members who have had stroke like symptoms we always suggest they make sure they have had a ProThrombin Time test. This will check your blood to see that it is not clotting too quickly.
I am very much at the point where all I want is to be normal again.
I would rather have FND then PD any day. The fact there are to few signs that point to FND, and the fact that all the drs that said its FND won't tell me why they think it is. They just say it isn't PD. I am no doctor but I read my doctors notes. I have all the signs pointing to PD. The notes after every visit says seething about my father in law having PD and it was said to me in my psychiatric Eval. Maybe I have sympathy PD. My symptoms differ greatly from my father in a law and my symptoms started before he was diagnosed.
My doctors have told me i mimic PD to a T and have all the right criteria for it. Yet they won't do a L-Dopa challenge to rule it out.
I have had an MRI don't and now sign of stroke or TIA was found. I would be willing to do more test if I havent already covered everything under the sun in previous tests. I have 28 pages of test results from generic to the rarest metabolic diseases. I have been told by a large number of people that New Mexico isn't that good in the neurology department. Most people I have talked to had to leave this state in order to find out what was wrong with them. Luckily I pushed enough buttons to get out of NM and get into Mayo in Phoenix, if insurance will pay that is.
Sorry for typos. Did this on my phone and autocorrect thinks it knows best. Also it does not allow me to go back and correct without erasing the whole thing.
You probably have organic Parkinson's or a neurological disease. I think this FND is just a farce, an excuse, when these doctors have no real answers as to what your illness is. Remember they are not God, though most like to think they are, especially neurologists. I've no time for these people. They use the term FND to cover up the real diagnosis of psychosomatic illness. A neurologist told me that. Anyway, they can only treat a few neurological diseases, I can't think of one they can cure. I treat myself by listening to my body. Lots of rest and supplements help and a determination to get better even though I'm in my seventies. Keep trying other neurologist. Don't be fobbed on by a doctor whose head is in the dizzy heights of FND.
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