Sorry for long post, thanks in advance, It first started 2 years ago. Where I would get dizzy during exercise, I did the usual increase water whilst at gym and have more calories before exercising, still no change. Although it was only happening during exercise, so wasn’t effecting my personal life much. A few months later, it was happening during the day, dizziness would last 2 weeks - 2 months, sometimes only a week. I got concerned and went to GP. Unfortunately my mum got diagnosed with breast cancer in the days prior to my appointment, so they said that was the cause. I was stressed and anxious. Ever since they put that on my medical records, every GP in that practice say the same, anxiety. I went to see a mental health nurse. To just be complacent which basically ended up as councelling for my mum’s health. I feel it’s totally normal to be concerned about your mother’s health. And 3 months later she was given the all clear! The symptoms were nothing to do with anxiety. As they were happening before/after mum’s diagnosis. Now I get Dizziness which can sometimes leave me staggering, clinging onto shelves in a shop at one point. Muffled ears Tinnitus Internal tremors Issues swallowing at times (not often) Pins needles, in extremities. Severe/mild headaches. Lack of coordination at times and off balance Leg weakness. My GPs are all aware of this, although he didn’t want to read my list of symptoms he just glanced over them, they read previous medical notes and say anxiety again. That’s it, It took me months of begging for help. For them to give me a blood test, which came back fine, and another few months to see ENT (which did a simple hearing test) and they sent me to balance physiotherapy, although my balance is perfect when I do not have symptoms. I am certain this is not anxiety. They tried telling me it’s a panic attack, although I have no Increase in heart rate, and a panic attack lasting 2 months… I don’t think so. When I haven’t got symptoms, I am totally normal 23 year old, no issues what so ever, these symptoms can last a week to 2 months. And the dizziness comes on suddenly, they then slowly reach a peak, gaining different symptoms, and slowly diminish. I make another GP appointment, they see me 1-2 weeks later and when I arrive, I’m normal again, because of 2 week waiting list, they do basic tests, knee jerk reflexes, which is fine, and say anxiety then I’m sent on my way… I do not go to doctors anymore I just suffer in silence, my family know about it and partner, and clearly see it when I’m getting symptoms, but I try so hard not to show symptoms now, which is impossible, just because I feel a hinderence and hypochondriac although my family believe me. I don’t see GP anymore because before I enter the doctors room, they have already seen my medical notes and diagnose me before ive entered room. So pointless me going to be told the same thing. I’m basically waiting for it to get worse, for ambulance treatment or something (which is awful thing to say I know) just ran out of options. I don’t want MS I just want answers. At first I asked for a ECG as dizziness during exercise, and they refused. So I highly doubt I’d get a MRI done. I also got access to all my medical notes, yesterday, all my medical notes state anxiety. And nothing on my symptoms other than dizziness. Although every time I go I mention every symptom. Sorry again, and thank you just frustrated.
Im not an expert in MS, I am just at the beginning of tests following the results of an MRI for what could or could not be MS but I wanted to reply as I feel for you as I too have the Anxiety label attached to me.
I was an outgoing person until my mid 20’s when all of a sudden and for no reason at all I was extremely depressed and suffered with Anxiety, the symptoms are awful and as soon as I accepted one symptom was anxiety, another would come along. The next 2 years were a bit off a blur, I worked, carried on as normal as I could but it was horrid, I was a regular at the Doctors, they prescribed antidepressants but I never took them, probably a big mistake! but I came out the other side and although I dont think I ever went back to how I was, I learned that my symptoms were or thought they must be anxiety. Im now in my 40’s, my anxiety is nothing like it used to be, I know how to deal with it, I hardly go to the Doctors but if I did, even I would say, I bet its anxiety and they would often nod.
So why am I on a MS forum, well for once I wasnt labelled with Anxiety and to be honest it wasnt a symptom I even thought could be anxiety, Id hurt my arm and MS or anything else hadnt crossed my mind so the results of my MRI came as a total shock.
Please dont think Im suggesting what you are experiencing is anxiety, Im certainly not but the mind is a very powerful thing and anxiety is horrible, its symptoms often mimicking lots of diseases and conditions, so having that anxiety label doesnt help, it makes it so much harder and Ive felt like Ive been dismissed by the doctors many times too. Why not go back to your doctors and take a member of your family or your partner with you, tell them you are struggling, maybe make a diary of your symptoms too. Ive had symptoms that Ive just ignored too as I felt stupid going to the docs with them, only time will tell if I was being stupid or not. Im waffling now I know, but I think what Im trying to say is please dont suffer in silence like I did, take any help the doctors will offer you, that was where I went wrong.
I hope everything is ok
I forgot to say, what ever you do dont consult Dr Google, its enough to make anyone worry
Thank you for your reply, you were not waffling at all firstly I’m sorry to hear about your MRI results my anxiety levels are pretty ‘minimal’ now apparently, I got discharged from mental health nurse. And I didn’t warrant any medication, which I think I would refuse anyway, call me stupid, but I hate it when doctors prescribe drugs for anything without finding the root cause lol, same applies for antibiotics haha, maybe that’s because I’ve studied in the medical field for animals (probably knowing too much is probably a bad thing) They did however give me beta blockers, to ‘settle my heart’ which actually made me feel terrible, so stopped taking them. So it’s surprising they are saying it’s anxiety and are not throwing medication at me so it can’t be ‘that bad’ although these symptoms are awful, at the moment I am typing this wondering why im even typing this haha, because I feel totally normal, showing zero symptoms. Yes the mind is a very powerful organ, it’s crazy. It does play tricks on you, and I think the more you think about them the worse they get. Now I’ve grown so used to different sensations that I don’t even blink a eye lid during the , I just ride the wave obviously at first I thought I was at death’s door. It’s more sheer frustration now, and not being able to do certain stuff I used to, until symptoms pass. How I’ve not had a single day sick from work is beyond me, if I feel rough my friends understand and will give me a lift to work as I do not trust myself driving down the motorway feeling as if I’m spinning. And I work in a office, so I get to my pc and hardly move during it. I do a lot of daily meditation (call me mad) just to make sure I remain peaceful although I couldn’t be anymore chilled even if I tried but again that makes no difference, I’ve actually woken up before like my feet are rattling and shooting shaking into my head, then I wake up pretty much full blown symptoms. I do however sleep really well, no issues with appetite just the odd swallowing issyes etc which also makes me feel like it’s not anxiety. God knows. Thanks for your reply, sorry to keep waffling myself.
Thought I’d add, do you maybe think you may of has MS since mid 20’s and it wasn’t actually anxiety after all? Just to throw spanner into the works. Again thanks for taking time to reply
Ha ha yes Ive thought about this too! It would make a lot of sense of the things that have been going on over the years. Ive already seen a Neurologist and I got the impression my balance and reflex tests were fine, so waiting on blood results and another MRI now but for once Im actually hoping this is all anxiety related
I have my fingers and toes crossed for you, maybe these results could put your mind at ease once and for all
Thank you. I really hope you get some answers too.
It really sucks waiting, limboland is no fun, I can’t believe that your GP is not putting you forward. I had a doctor who was very reluctant to send us to the hospital. Instead of going through him I went to the locum she went through every test first then got me to the hospital for my periods. I had a hysterectomy total one my doctor was not pleased he said I didn’t need it, I lost it,both my mum and I did a breakdown of all my problems, he then said maybe I did need one.
With my MRI showing results of demyelinating disease, I was put forward to see a neurologist. (I didn’t ask for it my eye doctor did) Is there anyway you can get to see another doctor, if you have some worries they should put you forward to the hospital.
I maybe wrong (probably am) that you may come across a worried and anxious so they want to treat that first, then everything else. Also you can ask the doctor to listen to you that although you may come across anxious but that you want something done about the symptoms that you have, not more medication.
I had a problem with one of my doctors in the surgery he didn’t listen and said that my thyroid was normal, which it was but the other times it wasn’t. He said it was more likely that it was diabetes and asked for a test.
I was furious, so much though I went to one of the partners and told him the same thing that I said to the other doctor (my blood test was negative for diabetes) but the doctor ordered another thyroid test and asked me to come back a week later to get to the results. I was right I did have an underactive thyroid. (it’s been six years now)
Don’t think that the doctor would do an MRI first thing but maybe you can get appointment with the neurologist who will do some tests. If you are not feeling well you have the right to get a second opinion, and as it is such a nasty illnesses that it needs to be treated as soon as possible.
There for I would fight for the second opinion with another doctor or specialist. Good luck and I hope you will feel better soon.
Thank you for your reply. Really appreciate your help, with the anxiousness this never used to be the case, but I’ve sort of developed a mild case of it because I’m concerned about symptoms, although during the symptoms I don’t get phased I’d still like answers though and would be lying if I said it didn’t concern me to some extent. But I feel if they actually did listen and went down avenues to sort it, then I wouldn’t be concerned so much, I recently found out I went to doctors in 2014 for dizziness. I was 17 and then I didn’t go to doctors at all until 2017 … so it’s not like I go there as a hypochondriac I feel I only go for real things effecting me, hence why I go often now (not this year yet) I will certainly fight for a second opinion I think, but feel it’s pointless as I’m not showing symptoms at the moment. But I do need to see a neurologist . Thanks again for your reply, sorry if this is blunt or has mistakes, I’m slyly replying at work haha
It really matters that you go to the GP now because it can take a long time to get an appointment for the neurologist so you may even have another relapse of symptoms. And if you go now they may find with a MRI that you have an old legion. And they have to wait around for another one but if you go when your having one they have to wait again for another relapse anyway, so with going now it maybe a quicker diagnosis. Kay
Thanks again for your reply, I will make another appointment, I know it’ll get me no where, I’m also sure that if I ask for a MRI they will more than likely refuse, because I asked. I also don’t want to cause a scene for them to do a MRI and there’s nothing wrong. Lol it’s proves them right. Although I’m sure there’s something going on whether it’s MS or not. Thanks again
I think you need to see your GP and directly request a referral to a neurologist. You shouldn’t be asking for specific tests (ie MRI), because those would be ordered by the neurologist, should your history and physical examination warrant tests.
And the tests they order could be different from what you assume. Yes, they may include MRI, but also nerve conduction studies, evoked potentials, lumbar puncture, ECG, blood tests, any number of things.
You seem to have settled on MS as needing to be ‘ruled in or out’. But that isn’t what a doctor (GP or neurologist) would do. They will listen to your history of physical symptoms and do an examination, then consider a) whether there is something neurologically awry, and then b) what that something might be.
So your initial goal is to get your GP to consider that there might be something neurological wrong with you. In your situation, this is the sort of thing I’d do. Make an appointment with your GP. Don’t get stressed about disproving anxiety as a cause, just list your most frequent or seemingly most significant physical symptoms. Don’t suggest potential diagnoses, just ask for their help in getting some answers to what appear to have a neurological cause. Ask for a referral to see a neurologist. If the doctor refuses, ask why. Then write a letter to the doctor concerned, pointing out what you feel are the most relevant symptoms and asking for his/her reasons for refusing a referral. In writing.
I think you will get a referral to a neurologist. The neuro will then be able to take a comprehensive history from you and do a physical examination. Then the tests will come.
Best of luck.
Thanks for your reply im settled on anything neurological being ruled out if I’m honest. It’s getting on my nerves, in the end last week I went to minor injury unit during a funny episode, they think it’s my heart, GPs still won’t see me for 2 weeks, but hey need to keep fighting for something
I hope it goes well for you and find what is causing all this bother.