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Hasn’t kicked I. Yet usually up to 2 week based on previous experience. But have been very unwell this week have had to go to bed a few afternoons 😔 it’s a poison so maybe my body reacting, one thing I am noticing is it feels like it’s moved so no longer just effecting my neck my biceps triceps calf’s and buttocks are twitching like crazy .
Regards john mcExactly got to get the dose right b4 putting you on 12 weeks. Does your Neuro use EMG ? That’s where they connect the needle to a sensor connected to a laptop . Imo it’s a must as it identifies which muscles are most active to inject .
Regards john mcAnna
Yeah some of the receptionists are as arrogant as the neurologists .They start low so I don’t think I am getting the full benefit. One thing I will say is the pain is less. Around Xmas I was ready to throw myself under a bus 😔
Yesterday he gave me the high dose so am hoping it’s better at stopping the spasms .
Pretty sure Peter will use EMG guided Botox.Best of luck . I’m pretty amazed these Neuros are so arrogant. Let them walk in your shoes for 24hrs let alone live with the condition 😔
Regards john mc
Anna
Even though they say every 12 weeks I’ve just started in January and had a small dose mid jan , mid February and md March then a big dose yesterday (350 units ) .
If your Neuro won’t speak to you go elsewhere. I heard there is a nice guy called Peter Puhl who’s at the SAN . Not the central coast but only a half hours drive.
Regards john mcIt’s interesting in 2015 I was experiencing muscle twitching in my biceps, triceps etc .not sure if it’s related. I spoke to Dr Google ( worst thing) and googled muscle twitches amd what was the first thing that popped up ? I Kay awake most nights thinking I had it . Eventually saw a neurologist who did nerve conduction studies and dx me with something call BFS . What a relief but now wonder was it the start of it but thankfully it settled down and only get the occasional twitch .
I do find myself wondering why they found and repaired the widow maker .why was I spared . The last year has been miserable with lots of pain and frustration the widow maker would have been nice and quick but often think I am to go on to bigger and better things .
sorry me again meant to say nearly 6 months back in may i was referred to a geneticist by a Neurologist for something else and I read her letter and she commented that I likely had dystonia in my neck back then probably hadn’t triggered as I had no pain and that was a zoom call during lockdown and she could pick it then but of course was ignored .
Hi my name is John Mc and have just joined the group this week and heres my intro.
Im a 59 year old ,married with 3 grown kids . I have still not been dx conclusively but seems like a dx of elimination than something conclusive .The problem Im facing is with xmas /ny plus wait lists I wont get to see a movement disorder neurologist will late Feb . Im sydney based . I tried to get into St Vincents but was told they get 40 referrals a week so looking at late march there. Whilst I not no ironman Ive always been very active with home renovations , an avid cyclist , gym goer etc . In 2018 i was scheduled for a trip to Ireland and then Croatia to see my son skate in the world championships ice skating . A week b4 I was scheduled to leave I had a pain in my back so went to a psyio who took one look at me and said you have shingles so there was a race around town to get a GP to get the anti viral drugs apparently critical they are taken in the first 72 hours . Luckily I was caught in time so off I went on my trip but when I returned I felt a lot of fatigue and was told it was proably post viral fatigue . Then I was tested for Glandular fever which they said id had at some stage . Bloods were normal so they decided to start looking at my heart . I had a scan late 2018 but didnt follow it up . Then in February I did and they said they wanted to have an angiogram . During this procedure they found a 95% blockage in my LAD aka the Widow Maker . They also found another 50% further down and another smaller 80% around the back . Tne net result was I had 3 stents and they were convinced they had found the problem . I wasnt convinced as I had been cycling the day b4 with no issues . But the fatigue continued . Then they started on my lungs and sleep apnoa . So did the sleep studies and I had mild to moderate so they started me on CPAP still the fatigue continued and I think they started to think I was a nut job . So they started me on this medication called modafanil . I may as well have been eating smarties . Then duromine again useless , they then thought I had narcoplexy . So back to the sleep studies but all showed negative . Around mid last year I developed what I thought was dry eyes so went to many specialists evening to the dry eye instititute but while she noticed my water and oil layers werent optimal she said they were better than hers and she is early 30’s she said what she was seeing shouldnt result in the discomfort I was experiencing and that otc eye drops would be more than enough to provide me comfort. she did elude to a condition that emulates dry eyes where neurons fire at the back of the eye making the same symptoms of dry eyes. After the heart stuff I was put on a pletora of meds so being a real cause and effect guy decided it was the meds causing it as it stated literly about a month after the heart stuff. So me being a cause and effect guy decided to stop taking some of the heart meds to test. I know I Was taking a risk but was desperate again nothing made a difference. One day a mate was doing some electric work for me an it was getting dark he asked me hold a torch he was working on a fan . So I spent the guts of 45 mins looking up holding a flashlight (the trigger) I then tried to straighten my neck but it was always pulling up and back . Off to the Pysio and got all these muscle strengthen exercises (3 months ) wasn’t getting any better . One day I was flat on my back doing the exercises and noticed my pinky finger on my left side and half my ring went numb . So off to A&E first who sent me home then the GP again who after doing tests with tissue paper and cotton wool decided to send me for an MRI scan. The results were pretty non conclusive just the usual wear and tear for my age similar to probably 80% of the population but I reckon this was the moment he started to take me seriously so gave me a referral for a Neurosurgeon at St Vincents . She examined me and said your not a candidate for surgery and she was 99% the hand numbness she said it wasn’t my neck but elbow trapped nerve . So she prescribed more psyio , acupuncture , pain specialist as at this stage my neck is agony. I went for the nerves studies and she was 100% right pinched nerve in my elbow so will go back and see the GP in the new year. Maybe a small surgery at most . Because of my neck problems Ive been resting my head on my hands and then my elbows on the table likely causing it .
What happened next is either luck , serendipity or something but she said it was on her mind something was bothering here when I walked away but she calls me on a Saturday morning . Shes a young mum with 1 year old . She says I know what you have , she had seen it once in perth about 7 years ago she said you have Cervical Dystonia and likely you don’t have dry eyes but blephrospasm . And the fatigue it was then it all started to make sense so my wife and I started researching and came across your site.
Apologies for the large Intro but I just felt it was important to show my journey to this point. There is just enough awareness in the community or the medical fraternity about this condition.
The only time id even heard of dystonia was my 82 year old father in law has parkinsons and has dystonia is his left foot causing it to curl up (I thought is was shortening of tendons or ligaments but hes had deep brain stimulation so is a lot better back playing golf and cycling like a maniac -
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