Shirleysy11

[Shirleysy11]

Hi I'm a new be. Been under neurologist since last Nov. Lots of tests all clear got told I have Dissociation I was shocked. Can anybody tell me is that the same as FND I have brain fog and don't remember everything he said. My partner was with me and he said the neurologist mentioned FND. Previous to thus I was diagnosed with pernicious anemia so all my symptons seemed to indicate neurological symptons brought on by B12 deficiency I'm so confused. Please can anyone help

[Hidden]

Shirleysy11

Morning.

I empathize with your confusion. The world we live in with FND label is full of confusion. I am sorry to hear of your struggles.

I always start at square one which is what is known. Pernicious anemia is a serious condition based on what I know. I hope you have received proper care for that issue.

B-12 deficiency, which is how I interpret pernicious anemia is different than what some of us have which is just low levels (not in state of deficiency) of it. However, both can result in neurologic deficits.

Now the confusion. How did the neurologist make the leap from B-12 deficiency to dissociation? And, did the neurologist actually go on to clarify that that symptom would correlate you with having FND? I believe they are two separate entities but I am not a doctor or psychologist.

I would go back and start with the diagnosis given to you on paper at time of office visit. I go to further follow up by looking at subsequent in visit clinical notes which for me are posted by my doctors on line in my medical chart.

You may want a follow up in person visit to have direct conversation to find out exactly what your neurologist is diagnosing and what their facts are for that diagnosis.

After going through what you have already experienced in health trauma, the one thing I would not let happen is to allow the neurologist to give you the FND label without having done his job properly to investigate and rule out the myriad of possibilities of other causes that can be associated with your symptoms.

Do not let vague or psychiatric biases lead to FND becoming a diagnosis of convenience.

This community is best known source of knowledge, experiences, support and compassion than I have found in any doctor office. Many, many sufferers have far greater minds on this subject than me. You should receive many replies of great value.

Please keep writing. We are all trying to deal with these issues together and input like yours adds another dimension to the process.

Thank you for writing. Hope it is a good day.

Dan / Seattle

[Shirleysy11 in reply to Hidden]

Hi . My Pernicious anemia diagnoses was made by my GP but my neurological symptoms didn't improve so I was referred to a neurologist . I had MRI scan ,nerve ending tests blood tests and all came back clear. I have experienced much trauma through my life but when I became ill last August I was at my most happiest, so as you can imagine being diagnosed with FND was a shock, but I have to say a lot of my symptoms do match. I do hope it is the correct diagnoses. I'm supposedly getting physio and physio therapy . I was an extremely energetic outgoing person but I found my day to day life very difficult I have to pace my day

[Hidden in reply to Shirleysy11]

Shirleysy11

Thank you for additional information. Your last sentence tells story so similar to what many of us on this site have transitioned from in life.

Still a mystery is how do our bodies find themselves within realm of FND, which in some circles of medicine, is viewed as a crossover disease with our minds. As you can imagine, I struggle much like you might with diagnosis because I have permanent systemic nerve damage of unknown origin so they now associate that as part of FND. How did they do that?

I have problem with medicine blaming solely my mind for a very real physical disease particularly when they did not investigate all possible causes of condition.

Easier to get into FND box than to get out. That said, I know people can benefit from therapy and get relief from symptoms and make improvement. I am thankful for those benefits to others and hope it continues.

I wish you only the very best outcome and good health. Would be interested to hear how you progress if you post on this site going forward.

Take care and keep an eye how those docs treat you. You always should be treated with respect and thoughtful care for the symptoms you experience.

Dan / Seattle

[Hidden]

Hi Shirley, you are lucky and I mean that in a nice way, as many of us have found on this website that we have been left by Drs, drugs that don't help thrown at us, negativity from all sides, fighting for years just to get a diagnosis, I know we all get the FND one but when a dr just keeps sending you to a phychatrist over and over, ignoring the agony as if it's not there, I could go on and on but it's pointless. At least your nuerologist recognised your symptoms and acknowledged them instead of ignoring them and telling you something totally wrong causing more upset and confusion. I have read on here about the lack of B12 and recently got tested, although it said I was ok I am still taking 1 a day, it certainly can't harm me as much as the anti depressants did. There is a site on here I looked at, perinicious anemia so I pressed that one and have been reading what people have been putting on their symptoms, although 'this is more for you then me I still look for anything that might help me. Very good luck and reading. Best wishes Lisa. 😊😊😊😊

[Shirleysy11 in reply to Hidden]

Thank you Lisa-Anne for replying . You are correct what you say I was one of the lucky ones .The neurologist looked at many diagnoses and I had various tests which all came gack fine. FND is a very difficult condition to understand and until I've got my head around it I will find it difficult to explain it to my family and close friends. I applied to PIP last Nov was turned down I'm appeal the decision as I know have a diagnoses Zi only hope the panel assessing me will understand FND. I have pernicious anemia and the symptons are so similar to FND. best wishes to you too.

[Hidden]

When I first applied for pip I only got the mobility as my partner had to answer questions for me as was in seizure, it took long time to get them to come to house but I couldn't get to them, a charity helped us to fill in forms again referred from my new dr. It's called health in mind and they found charity to help us, 2nd visit was apparently a lady who understood my symptoms and I was finally awarded last December. It took a lot of help and fighting from my partner to get it but he never gave up. FND means nothing, most people including professionals have never heard of it. The forms you have to fill in your worst day as they don't understand diagnosis. Ex. Am unable to drive, bath on my own, unable to cook or even remember to eat, forget medication, struggle to get out of bed, unable to turn in bed, unable to walk far without dragging leg, wheelchair for appointments as in seizure, and live everyday in pain. If you don't write this is how it affects your daily living they don't understand and first time I got 2 points. After help doing forms properly I was awarded top. Please get any help you can for these forms as I was told the people who check our forms don't understand what we have either. Wishing you all the luck in the world as I believe we deserve it for a non existent quality of life. Best wishes Lisa. 😊

[Shirleysy11]

Thank you fr your advice regarding PIP. What part of the U.K. Are you.

[Foxy2baby]

Hey new as well. I was diagnosed with pernicious anemia earlier this year in April of 2018 I started having speech changes involuntary movements spasms I was falling brain fog and it almost appeared like I was having many seizures. They told me my anemia was so critical but they only put me on B12 sublingual. The involuntary moments kept getting worse I had to see the neurologist and they done all types of tests and they said I should see a rheumatologist which I'm waiting to see. But I just saw a movement specialist for the first time and they diagnosed me with fnd. I was shocked I'm still shocked because I truly feel as if something is really wrong not stating that this couldn't happen but I think there's a medical issue that is not being addressed. The Specialist even told me she didn't feel my permissions an email was being treated properly I mean I've never even happy 12 injections. I get so cold which make my spasms worse my temperature drops people are starting to notice my speech changer work and behavioral changes as far as mood and it often appears like I'm drunk or I'm on something so I find myself trying to hide my symptoms the best way that I can. I am walking better but I do still have to use my Walker periodically but I don't use because I'm afraid that they're going to let me go at my job and I just feel emotionally drained body hurts all over I feel like I'm thinking slow I just don't know what to do and I have no support I truly do sympathize with you and hope you are able to find answers just as well as I am hoping for myself

[lily82 in reply to Foxy2baby]

Hey. Have a good look on the net for studies about the connection between B12 deficiency and movement disorders. Here are a few to get you started

ncbi.nlm.nih.gov/pubmed/273...

tandfonline.com/doi/abs/10....

"Both adults and infants deficient in vitamin B12 may present with chorea, tremor, myoclonus, Parkinsonism, dystonia, or a combination of these,"

When I went to see a movement specialist recently- they ran a bunch of antibody tests, also B12 and folate, as deficiency can cause movement disorders. And of course cognitive issues too. Please try and get a second opinion!

I'm genuinely shocked you've been given this diagnosis, when Pernicious Anemia can cause so many neurological symptoms.

[lily82 in reply to Foxy2baby]

Also, do you know there's a HU Pernicous Anemia community on here? You could post on there, see if anyone else has suffered with movement issues.

[Foxy2baby in reply to lily82]

Thanks a bunch