Nuerologist appointment

[andyglasgow2016]

Hey folks

I have my 6 month check up with my consultant dr Murray in Glasgow tomorrow.

Will hopefully get some more help maybe but if there is any questions re FND I can ask on behalf of people please don't hesitate to comment

She is a specialist only one of 2 in Scotland also and is incredible and so encouraging.

So don't hesitate.... I'll do my best!

[Hidden]

Yeah Andy just one, are we going to recover? Can't seem to get an answer to that one. Thanx martin

[Lawley3 in reply to Hidden]

I was also going to ask that same question, and also can any symptom be classed as functional because my neurologist has put everything down to this disorder and some of my symptoms don't fit on the list that is on the neurosymptoms.org.uk website.

Many thanks

Louise

[Hidden in reply to Lawley3]

Hi Louise, I've got a list as long as your arm of symptoms I suffer from, I looked on the Parkinson's website and discovered I suffer from all of em, but apparently fnd has the same symptoms as ms and Parkinson's I can send you the link if that will help?

[Lawley3 in reply to Hidden]

Hi Mart,

Yes that would be great if you could send me the link.

My symptoms resemble ms but have a strange mixture of other symptoms thrown in! The neurologist also said some of my symptoms resemble m.e but also said this is a functional illness.

Thank you for your reply

Best wishes

Louise

[Hidden in reply to Hidden]

Hi Louise hope this helps

parkinsons.org.uk/content/p...

[Lawley3 in reply to Hidden]

Thank you Mart,

I will have a good read later.

Best wishes

[Danslatete]

How did you get on? Are both doctor in Glasgow? I live in Angus and I get no treatment at all for my issuses

[andyglasgow2016]

Thanks guys

I'm heading there for 1pm

My questions do entail... How many people has she taken care of and seen personally make a full recovery

Will let you know how it goes

[andyglasgow2016]

Hey guys

She was running late by an hour in her clinic but she was very apologetic. Was not an issue as said its better to feel like you have someone who cares rather than a drive through rushed appointment.

I asked re will people make a full recovery...

Could see it was difficult to answer but her response was helpful...

She said to function as much as possible. She has seen many people come to a point of returning to work and managing their symptoms ....

She's only seen a small amount in her clinic come to that point but she is relatively new to this field also.

So was encouraged to stay positive and keep doing what I'm doing

I try to swim 8 lengths 3 times a week...

I have gone from a wheelchair to using sticks and a wee boot scooter ... She was thrilled with my progress and encouraged me to not give up.

I'll go back again in 6 months

I know I am a blessed victim of FND coming to where I am as I witnessed several others going in and out of her clinic who were far worse than me. It's not about a game of medical top trumps because we each face our own battles.

I battle daily with social work to get help to have a suitable and safe shower installed ... But I go to swim to get showered... May seem a solution but it's frustrating

Never give up guys and be sure to thank those who stick by you such as family! They too are victims of the umbrella of FND

Please feel free to private message me as I want to support others through this or answer any questions

God bless

Andy

[Hidden in reply to andyglasgow2016]

Hi Andy, I'm very interested to learn more about FND. I see a young neurologist at the Ninewells on Wednesday. The last neuro I was under, in Aberdeen, decided that many of my symptoms were functional after doing a whole raft of tests. I feel he was wrong. I don't understand how they can call it functional if a person can't function with it?

Either something is of the mind - in which case we should be seeing a psychiatrist rather than a neurologist - or it is brain related - in which case it surely warrants treatment of a similar type to those offered to MS or Parkinsons sufferers?  After all Parkinsons is usually only diagnosed through a process of exclusion rather than specific tests showing up positive.  And people with Restless Leg Syndrome can be treated with Parkinsonian drugs so why not FND sufferers too? 

Sorry to ask these questions after your appointment but I am genuinely baffled at how some are diagnosed with MS or PD where others get the diagnosis of FND despite having almost the same symptoms and poor outlook? Just because lesions aren't discovered it doesn't mean that some aren't hidden in other parts of the body. Three consultants in different specialist areas have told me that there will always be a small minority who don't fit the diagnostic criteria but still have the disease because these criteria are only decided on by a committee of specialists after all. I hate the thought of people being left on the shelf with such a non diagnosis. 

The neuro I'm to see has a special interest in Parkinsons so she may not be able to help me because I strongly suspect my problems are autoimmune in origin as I am hypothyroid and have had RA a few years ago. 

Maybe some people here need to see rheumatologists or endocrinologists or immunologists as well as neurologists in order to get a proper diagnosis and real help? There are geneticists who say that Scotland has a poor track record for serving those with rare diseases and I'm starting to see why. 

However I am going to take a leaf out of your book and start swimming everyday as it's obviously helping you a lot which is great. 

[Melstarz in reply to Hidden]

I believe you undoubtedly... We all have the same symptoms... Thyroid, vertigo, inflammation.... They call something "functional" when they do not see damage to structures....however (they do not have the ability to see damage to things like nerves) we still do not have advanced medicine to truly say there is no structural damage because our technology is NOT a perfect science and perhaps they are not performing the proper test but instead just performing the most common and most typical which our cases certainly are not....I agree it's very deceptive and frustrating to call something functional when it causes such severe dysfunction...they should call it dysfunctional neurological disorder really.... I truly suspect this to be a genetic/ blood disorder issue. My mother...father..sister...and two aunts and one uncle all have the same symptoms...only the youngest get diagnosed with FND.... Until eventually they are diagnosed with MS, Thyroid Disease, RA, Sarcoidosis and Cancer. I am watching this cycle happen right in front of me. I have had doctors tell me that the tests they do to diagnose have to read levels that are high and typically in a young person or someone who is fighting the condition the antibodies or whatever they try to find might not be bad enough (yet) for them to see it. In a world where seeing is believing it's hard to get anywhere. I urge everyone to find a Dr willing to rule out all possibilities. I also urge everyone to get a full nutritional panel done. My B12 consistently drops due to now being diagnosed with pernicious anemia....without B12 your nervous system is unable to "function" it causes tremors and all kinds of very disabling symptoms and honestly most doctors don't have a clue that your brain and body cannot function without B12. Sorry for my little rant here but I hope this can help anyone.