Saw the Neurologist at 9 months in... Here's how it went

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Saw the Neurologist at 9 months in... Here's how it went

Postby Gamindsoc1509 on June 19th, 2014, 7:47 pm

Hi All,

So I saw a wonderful neurologist yesterday called Prof Stephen Reddel in Sydney. Who was recommended by a fellow bfs'er John Mccarthy

Summary of my experiences up until today.
Me: 24 year old male. Mild history of health anxiety. (I get stressed about specific symptoms or issues and go through a period of panic. Usually does not last more than a month and is not always an issue. Comes and goes). In everyday life aside from this, I am not depressed at all, very motivated and positive mood, minimal anxiety and not much stress. I also have essential tremor.

Mid September 2013 - Coming out of a bad 3 month bout of being unwell. The flu, which led to bronchitis, which led to two fractured ribs from coughing and finding out I had a vitamin D deficiency. I start getting random twitches in different parts of my body everywhere for a week or so. I googled it. Found MND started to get a bit stressed especially considering the fact that it didn’t go for a while.

Oct 2013 – Started with a full blown panic, watching my body all day. Feeling twitches here and there in different places. I understood the likelihood of me having MND were small however was still concerned about the small possibility.

November 2013 – Saw a highly regarded neurologist called Dr Raymond Schwartz. Poor bed side manner. Dismissed as anxious immediately. Only checked reflexes and sensitivity, told me to get on with life. This was not helpful to an anxious person, as he didn't do the full routine tests and also wasn't listening or happy to let me ask questions.

Nov 2013 to Feb 2014 – Went through a period of trying different things. Vitamind D, Mag and Vit B did not help. Saw a physch and we worked on some better thinking methods. My body wide flutters settled into the form it is still currently in which is. 24/7 twitching in feet. Random twitching in calves daily and then random body wide twitches daily. Other hot spots do not happen often and only usually last 3 days max. Started having tightness in my right leg constantly which also concerned me. This with a very stressful period for me.

Feb to today – Got on with life, wasn’t overly stressed day to day. The less I focused on the twitching the less I noticed it. The only way it affects me is because of the fact that my feet where the twitching is are more proned to cramping. Affects me doing martial arts or certain stretching positions. The tightness in my leg became more random rather than daily. Doctor believes it’s compensation tightness from my ACL reco on the other leg 2 years prior.

Wanted an 8 or 9 month follow up to truly be able to let this whole issue go.

June 19th 2014 – Walked into the office with Prof Reddel. He started off by wanting to know about me and letting me talk. He was happy for me to ask questions and was happy to answer, he was also happy for me to provide him with all the info I found necessary to say even if he did not find it necessary to hear.

He got me to sprint down the hall then moved through a series of strength tests. Heels, toes, walking in line, body wide strength testing, reflexes and also scanned me for fasciculations of which he could only find a few at the time. I showed him a video of the fascs at their worst. Asked me if I wanted an EMG and I said if he truly didn’t believe I needed one I wasn’t going to waste our time and he said I do not. My clinical was completely clean.

The interesting bits of info I learned from him –

He told me he did not even want to diagnose me with BFS. He doesn’t believe I have a syndrome because it’s too common to be labelled as such. He said 50% of neurologists get BFS at some point in their life. In the main he sees in this order with the issue. Neurologists > GP’s > Physios > Office Workers (on computer all day, access to too much information). He stated some people become over sensitive about their bodies and start feeling way too much. The stress and anxiety makes it worse, then you get stuck in a vicious circle. He said if I walked in with full body wide fasics visible all over my body, he might label me with BFS.

For my own sanity, I asked him how often he saw someone with just twitches that then had MND. Or how often he’d sent a patient a way who went on to get it.

He said in his career of 13 years as a neurologist he’s had 4 patients who came in with only twitching as what they saw. Of the 4, he found weakness in all of them with no upper signs so he couldn’t clinically diagnose them but all were suspected and were followed up. Of the 4, 2 went on to have MND, one had a serious vitamin B12 deficiency and 1 had some other neurological issue (can’t remember). Every other MND patient has been quite clear from the start, that it was what they had.

He was a fantastic neurologist and I’d recommend him to anyone else in Sydney. Oh and he had a “BFS” issue around 8 years ago as well that lasted for a couple years and still comes and goes now and then. You just have to learn to dissociate the mental connection you’ve made between twitching and MND.

Thanks all.
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Re: Saw the Neurologist at 9 months in... Here's how it went

Postby mwagner on June 19th, 2014, 10:17 pm

Fantastic post. This will be helpful to so many...
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Re: Saw the Neurologist at 9 months in... Here's how it went

Postby Yuliasir on June 19th, 2014, 11:16 pm

Great! hope you woud accept the idea that your case is completely benign.
Remember what the doctor says: MND patients usually have suspicious signs on the clinical exam, even before EMG, or they are evident from the very beginning in this or that way.

So both the doctor with bad manner and with the good one told you the same - go on with life.

The key point is that neurologists are not pshychologists or psychiatrists. Of course I agree that it does not help a lot when doctor dismisses you in 5 minutes after simplest tests, and it is clear that we all are looking for doctor who talks and listens to us and examines us carefully, but generally there was a true message even in a bad-mannered doctor visit: we are not neurological patients but need psychological treatment, anti-stress program, change of way how do we perceive our body and what do we think about our future (that sence of doom which all of us face sooner or later and with which we have to live until our really imminent death). Neuros do not provide such type of medical care and they do not have any means to help us properly. Psychologists can and psychiatrists too, but it is really funny how all sick people are reluctant to visit the doctors they really need. I read tons of stories by the way in which ALS victims - even with the evident and worsening deficite - resisted the idea to see a neuro and even thought that this could be a transient condition. And here I see that some of our fellows even in a deepest need of proper treatement do not do anything believeng maybe that their fear would go away by some kind of mumbo jumbo or maybe becasue of the fear of stigmas associated with the word 'psycho'.

So follow the right course my friend, and relatively soon you will feel like all your ALS fears are just a bad dream.
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Re: Saw the Neurologist at 9 months in... Here's how it went

Postby Red Raider on June 19th, 2014, 11:51 pm

Thanks for the post!!!
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Re: Saw the Neurologist at 9 months in... Here's how it went

Postby nrwtwitcher on June 20th, 2014, 5:38 am

Thank you for this post. This is really a reassuring text!
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Re: Saw the Neurologist at 9 months in... Here's how it went

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