In January 2023 I had about 4 weeks of 'strange' symptoms - including numbness, pain, buzzing in my arms, spasticity in my legs and toes, dizziness, blurred and double vision, insomnia, memory issues and headaches. All of these symptoms were intermittent - would last a couple of hours and then go away, and sometimes come back in a few days and sometimes not.
This was followed by 18 months of fatigue - 60% what I'd define as really run down and tired feeling, but 20% genuinely so tired I couldn't do even the most basic things.
I had a neurology consult in August 2023 where they told me not to worry about anything because the symptoms - except for the fatigue which was only at run down levels then - had gone away.
I've now this June had another 3 week episode of what feels the same to me. The same types of symptoms - but intermittent again.. And the really bad tiredness is back with a vengeance.
Went back to the GP they they seem to think that I shouldn't worry because all of this is intermittent. Basically said that if it was something serious like cancer the issues would be there all the time and she said that these could all be psychological or brought on by stress. I think she's also placing a lot on the fact that the neurologist said there was nothing wrong with me - but the neurologist saw me for literally 10 minutes and the only diagnostic she did with me was to make me push on her thumbs.
I'm worried about MS - it feels to me like I've had two distinct episodes, within 18 months of each other, and characterise by vision, cognitive issues and fatigue, so I'm considering getting a private neurology consult. But also I know that I have struggled with mental health for my entire life, so if the fact that I experience only temporary eg numbness really does mean that this isn't likely to be MS I don't want to waste my time or money (or be made to feel crazy by another HCP which is never fun!)
I'd love to know if when people who know they have MS have an episode what the duration of their symptoms are - both how long the episode is and how long an individual symptom would last - it would help me make a call one way or the other.
Thank you!
E.
Still undiagnosed (not so good news) I have been seeking a diagnosis of MS since the late 80s on the NHS but so far haven't gone very far
I have finally been seen by the memory clinic, where the person who saw me didn't seem to have any obvious answers for me. I don't think these memory doctors like to stray far from their script. An example of this was the question 'Have you stopped doing things you loved to do?' and my answer was that I had. Had I been less confused, I might have elaborated a bit and added that the reason I no longer work with coding, building websites and running an online retail business, is that I have forgotten how to do all these things The doctor took the answer I gave her as a pointer that I was depressed!
She sent meon to a dementia neurologist who I got to see in early December last year (sort of indifferent news as he has now passed meon to somebody else). I read the letter the neurologist has sent to the next person and it includes their findings. The current diagnosis is of cognitive and memory issues that are most likely caused by a lifetime of untreated ADHD combined with a brain injury caused by a cardiac arrest and time spent in a coma in 2016.
So.. my issues continue and I still could have a long wait to move on to the next stage in my journey. I checked online for waiting times for an NHS diagnosis of ADHD for adults in East Sussex and the average time is about 5 years.
Hi, first time here. Have had relapse remitting MS for about 20yrs and after a tricky start despite the odd flare up have had very few major issues for around 15yrs. Last year or so I have had the feeling of lots of minor increases in symptoms/ mini flare ups but in the last few months I have seen a massive increase in pain, cognitive issues, fatigue etc that just seem relentless. Have undergone a variety of tests (unrelated to MS) all of which come back as without issue and GP’s current best guess is depression and or IBS. I don’t feel depressed but I am in constant pain which is sapping my energy now. MS nurse is trying to get a consultant to see me (last few yrs all appointments have been phone calls only). Anyone have any words of wisdom or comfort
Hi Everyone
I first asked a GP about my symptoms back in the late 80s and he told me he suspected a central nervous system disorder after doing the usual neurological tests GPs can do. He referred me to a neurologist.
The neurology appointment and consultation arrived early 1991 and he repeated the same tests the GP had done then said he was all for sending me for further investigations. He then asked me to wait in his side room while he took a look at my medical notes in case he missed something.
After 10 minutes or so he told me that after reading my notes he had decided that since all my symptoms were most likely due to mental health issues (anxiety because I was mum to 2 children with special needs),he felt further investigations weren't needed. I would no doubt get the same response now as I am currently caring for my husband who is terminally ill.
In the 30+years since, all of those symptoms have got a lot more noticeable and others have been added.My current GP knows about the new symptoms but I'm still know nearer getting a diagnosis than I was 30 years ago.
I have had friends accuse me of malingering as I have no diagnosis (dumped friends now) and when I was in a coma following a cardiac arrest four years ago, hospital staff told my husband and my son on different occasions that they thought I was a hypochondriac. I can only assume that this is on my medical records as I hadn't talked to any staff at that point.
I am currently working from home as a writer and also run a bunch of on-line stores so it's not like I am just a lazy so and so.
I'm really posting to say that acceptance without fighting for a diagnosis has simplified my life so much and I am a much calmer and happier person for doing this.
Hi all. Hope everyone is doing as okay as can be! I've had these new symptoms for about .. 2-3 months now.. they're driving me insane.. My jaw/teeth clenching together. I'm not knowingly doing it. Just happens. Starting to really hurt my jaw and teeth from the strain and pressure of it. Also my eyes have been automatically squeezing closed. Sort of a similar feeling to when cutting onions (minus the tears and stinging) but that urge to squeeze the eyes shut. Does anyone else experience these? Thank you!
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