Hi,
I’m not sure where to begin or know what I’m allowed to say, but I will start saying I don’t know much about MS. I’m here because of what I’ve been experiencing physically over the past 7 months and I don’t know what to think or do. I’m a 38 year old male and I have always been active with regular exercise and on the whole good health and strength.
7 months ago I started getting unusual feelings like weakness, especially in my legs. I pretty much ignored this and tried to carry on, but found it to be more regular and had this feeling often like I hadn’t not eaten to the point I bought a blood sugar testing machine. No issues there.
Then I started to develop a problem with swallowing food. Like my esophagus wasn’t working as food gets stuck halfway down causing discomfort and pain. I even had a gastroscopy which revealed nothing sinister, but does not measure muscle function so that issue is still ongoing.
During this time I have had terrible tingling in my spine, neck and back of my head. This is something that comes and goes but is an awful sensation and is often accompanied by periods of exhaustion. I’ve never had this in my life before and oddly have times I feel much better as if nothing is wrong. It comes back though and one day can be so different to the next. I still exercise using weights but find doing half as much as normal can bring on the exhaustion for days.
I also experience jerky movements which is worse in the morning. It’s hard to explain the sensation, but my movements are not as they once were. Especially movements excerpting force or stretching/reaching.
I also get muscle spasms in my neck and chest regularly. Often when I’m not doing anything or laying to sleep. I’ve noticed I get small spasms in my face that are not visibly noticeable, but I can feel them.
I’ve also found that for at least 5 months I have to wake 4/5 times per night to go to the toilet. I never had this previously or perhaps just once in the night. It is not as bad during the day.
All of these things have significantly impacted my life. From work to every day activities. When these symptoms are at their worst it’s very difficult. Especially the tiredness.
I’ve spoken to my GP numerous times about all of this. They seem to focus mostly on the swallowing issue and for all of the other symptoms they just keep giving me blood tests which come back clear. I’ve had more blood tests in the past 5 months than the last ten years. I’m grateful for checking, but I know my own body and I feel that dots are not being connected and I’ve even been told that these symptoms are simply an unknown. It’s very frustrating because I know something is not right and from having a brief look online there is clearly some red flags and testing available instead being told by my GP over the phone that they simply don’t know what it is.
As I said at the start I don’t know a lot about MS. I only know very brief details I have read on this website and the NHS, but it was eye opening to me to read given what I am experiencing. I have suspicions that I might possibly have MS, but my GP says nothing about the symptoms I’ve expressed multiple times to the best of my ability. I just have numerous blood tests. They all come back clear. I then get told after the blood results sorry it’s an unknown. It leaves me thinking how can this possibly be an unknown?!
Thank you for reading. I apologise it is so long. I wasn’t even sure if I should post anything, but I actually feel quite alone like no one is listening. I’m a guy in my thirties, normally fit and healthy without any abnormal concerns. I don’t want to feel like this physically, but I do. Knowing something isn’t right for so long, but being completely helpless to do anything to find out what it is weighs heavy. Thank you again for reading.
We aren’t Doctors on here, but people with MS, so can’t diagnose. It does sound like MS could be a possibility and quite probably something neurological, even if not MS.
Go back to your GP and TELL them you want a neurological consult. They almost can’t say no because to do so would be negligent and they pay a lot of money each year to insure against negligence claims. You’ll need a head & neck MRI and if they’re feeling bold, they need the consult & MRI to be marked as Urgent.
Ideally, write to your GP surgery (mine has an email you can use for asking for appointments - I think they all do) because it is unambiguous compared to a voice call. It may take a couple of months before you’re in front of a neurologist and getting a diagnosis (their definition of Urgent…) but if you’re lucky, some GP’s will order the MRI, so that first contact with Neuro is post-MRI, thus saving a couple of months in another queue.
Let us know how you get on.
I can relate to this but I was ‘lucky’ in the end. two GPs at my surgery were horribly dismissive one putting it down to my anxiety (he actually said “oh yes you have anxiety, I’d better be nice to you”) the next one said to ring up again if I had another fall - even though when I had falls I couldn’t get up off the ground, even with my husband’s help. He also told me to buy a blood pressure monitor and take my own blood pressure. A few months after that I developed double vision. Thankfully when I rang the surgery this time I got a different GP who listened to me and treated me with respect. She even invited me for a face to face appointment! after which she referred me for an urgent MRI. The rest, as they say, is history. I can’t say what your symptoms mean but I definitely think you should persist. Hopefully there are other GPs at your surgery who will be more help. I think the idea of emailing your surgery is a good one I don’t know much about 111 but would they be able to give advice? I wish you the best of luck with getting a proper diagnosis
I am very sorry to read of your experience. That must have been awful for you.
Bless you for sharing and for your encouragement. I’m not saying I want to be diagnosed with MS or anything, but knowing something is not right and having no answers and what feels like nowhere to turn is awful.
In all honesty I did have anxiety at times. Who wouldn’t when you have no idea what is wrong. I’m not anxious now as it’s been so long. I’m just frustrated and also battling each day. What I call good days now used to be every day for me. I still carry on and get everything done that I need to, but in a physically struggling fashion. Thank you again.
Also, at one point I wondered if it was muscular or trapped nerve and told my GP I was going to see a chiropractor. I was desperate to find out what was wrong and thought it was a possibility. My GP just told me to not bother and save my money. He didn’t say why and gave no other alternative as to what my problems are. I never saw a Chiropractor either. This is part of the frustration that I’m the only one trying to find out what is wrong with me.
Thank you for your reply. I’m certainly not looking for a diagnosis here, but someone who might understand what I’m experiencing and what I should do. I actually did email my GP reiterating the symptoms and explaining that people are encouraged to talk to their GP… particularly men that tend to ignore things… and I told my GP that I cannot accept what I’m going through as an unknown. He responded by booking yet more blood tests even though I’ve had so many. To my mind blood tests do not show everything. They simply rule certain things out. I’ve consulted with my GP at least 8 times since February about this and I get nowhere. I know I’m not right in myself. I’m trying everything to feel physically better, but it doesn’t work.
Am I right in thinking from what you have said I should just come straight out and tell my Dr I want to see a neurologist? Even though he knows my symptoms clearly, but has not even mentioned the possibility of anything neurological, MS or anything other than drawing a blank saying it’s an unknown.
It’s extremely difficult living with these symptoms and it wasn’t sudden, but gradual. My whole life has totally changed as a result. Thank you again for responding.
Yes.
Your GP has already been borderline negligent by being so dismissive of your suggestions. I had a conversation with a consultant and dropped the N-word and suddenly got a flurry of activity. If the GP is fobbing you off, use the phrase “just so we understand each other, if I suggest X and you reject it, and it subsequently turns out to be X, that would make you negligent for not pursing it, wouldn’t it?”. You have nothing to lose, yet they rely on Joe Public not having the balls to be so bold.
OK, I’m going to do this and if I’m not getting anywhere I’m changing GP. I cannot continue to have my experiences dismissed. The GP knows I’m a busy person with work and being a father, so is aware of the impact this is having. I’ve said it until I’m blue in the face.
One thing I thought of is recently he said “the mind is a very powerful thing” this is after telling me my symptoms are an unknown. I had no idea what this was even in reference too, but I’m starting to think I might be being fobbed off as if it is somehow in my mind. It isn’t.
Thank you for your advice.
Hi james
Sorry to hear about how you are being treated by your gp
I had exactly the same situation for around five years being dismissed by my gp saying i was making it up and it was all in my head.
They almost had me believing them but i knew something was not right and that i knew my own body so had to persist.
I sat down with the gp and told him that i had better things to do then visit the gp all the time and that before this happened i never visited the gp.
He agreed to send me to neurology just to shut me up.
This year i received my formal diagnosis of rrms , its horrible but at least i know whats happening.
So what im saying is you know your body and have to live with whats happening so persist with your gp until they send you to neurology.
Stay strong
Wobbly
Thank you so much.
You’re exactly right. You know something isn’t right. You keep saying it, but you are dismissed. I definitely doubt myself often by thinking well my GP is saying it’s nothing and then my symptoms quickly remind me I’m not OK.
I’m not saying it is MS. I don’t know. I only know what I experience pretty much every day and how much more limited my life has been this year. It can’t be nothing. I will persist and hopefully find out one way or another.
Thank you for sharing your story and experience. I’m so sorry it took 5 years.
Hi James. I’m kinda in the same position. I’m seeing the GP later today and so worried they will dismiss me. However I have said in my e-consalt email to GP that I can across MS symptoms on NHS website and I was shocked with the similarities.
In fact, I was so shocked I woke my husband up and showed him and the first thing he said was ‘well you know what u have to do, see the doc straight away’.
I hope your GP treats you better this time.
Good luck
It’s very difficult. You know something isn’t right. You explain over and over and get dismissed. I really don’t understand the mentality behind not checking? If the symptoms are listed the drs should try to rule it out.
I hope it goes well with your GP. I talked myself out of contacting mine today. It might sound ridiculous, but it’s like a fear of repeating myself and getting the same response and left with no progress forward. This week I’ve found very tough with the tingling sensation and the tiredness. It’s the bank holiday and perhaps by Tuesday I will build up to talking to my GP again. It’s pretty sad that I’m reluctant to speak to my closest medical professional.
Good luck with your consultation and hopefully it takes you a step forward to answers. Thank you for replying and sharing.
Hello James,
Did you ever get to the bottom of your problem and how are you feeling now?
Thanks 