Just wondering if anyone else feels this way.
No matter what I come to them with, they tell me it’s not ms related. But often when I read on the ms society website, it says it’s a symptom.
Can anyone relate ?
Hi EmilyR
I’m sorry to learn about issues you are constantly having with health professional you are seeing.
Are you referring to appointments with your GP or neurology dept / MS nurse?
If it is neurology or MS nurse, I would advise you to see your GP as some what can be seen as MS symptoms can relate to another medical condition. I have been told not to assume that all symptoms will relate to MS even though they might be listed as MS symptoms. Your GP should be able to list of other possibilities. And it might take more than one appointment till you GP exhausts all other possible causes of your symptoms. Also, if your GP comes to agreement that it most likely relates to MS, he/she might be able to send a letter to the neurology to support you and even able to offer another neurology department depending on your location and availabilities.
If you are not getting anywhere with your GP who is not giving you any support or investigate what is causing your symptoms and is disregarding the possibility that what you are experiencing relates to MS, it might be probably time to seek a second opinion or even change the GP.
Prior to my diagnoses, I was visiting my GP on numerous occasions even twice a week as I was very unwell. I did not know that is happening to me the treatments I have been given did not work. I even had ambulance coming to my home couple times in one week. I was even considering changing my GP at the time, but I remain persistent and in a long run I’m pleased I stayed registered with my GP. It was a rocky road.
Stay persistent, do not give up.
Wishing you all the best
Thanks for your insights.
I’m referring to when I actually see my neurologist or when I email the nurses about things. They just brush it off. For example an increase in fatigue and persistent migraines or something I would describe as MS hug.
I’ve had all these things investigated by the GP, who thinks it could be related to MS. When I ask the Neurologist, it’s a flat no- nothing to do with MS.
I have a recurring under eye twitch that lasts for weeks on and off, apparently it’s absolutely nothing to worry about. I was in hospital being investigated for chest pain and when you read the symptoms of the MS hug, it sounds very very similar to what I had, I tell the neurologist and he said ‘ no it’s not the hug, the hug would last for weeks, not just for 3-4 days ‘.
I had tingling sensations in my foot a while ago, lasted for several weeks and the neurologist and nurses told me that it’s not MS related.
I’m not looking for symptoms or anything like that but it’s frustrating.
My GP is actually more helpful and does investigations and then says to contact my neurologist and then the neurologist / MS nurses just fob me off.
Last year I had recurring muffled ears. I saw the GP and an ENT specialist, who found no issues with my ears and raised the possibility it could be MS related. I also had tinnitus- spoke to my neurologist / MS nurses and they told me it’s definitely not MS related.
Not really sure why I’m asking this but are these new symptoms, when was your last MRI scan and when Is the next
Hey Hank. These are just some examples of things that have come up in the last couple of years. The eye twitch I still have, as well as the migraines and fatigue. I had my last MRI about a year ago. I did have a brain MRI ordered by my GP 3-4 months ago because of the increase in migraines, but that MRI wasn’t reviewed by my neurologist-so they weren’t able to compare it to my other MRI’s. In general, disease activity has been stable and very few lesions, thankfully. But it doesn’t tell the whole picture.
I switched Hospital Trusts. Like chalk and cheese.
However, I still go to Urology Dept. of original trust. Got talking to Urology consultant and without directly criticising the consultant I was under, suggested if I went back, should ask for Consultants X or Y (might go back because of travel distance to the new one).
So, not all trusts are the same and not all consultants are the same. But you’re right: don’t just “settle”. If it feels wrong to you, it probably is wrong.
Graeme
Thanks GC. I never actually see the same consultant if that makes sense. I’m under a certain consultant, but always see a different member of his team. I haven’t seen my consultant in 2-3 years.
I have considered switching as I’ve moved further away from my hospital. But the one I’m with is supposed to be the best one or one of the best. Queens square in London.
Sadly, medical gaslighting is a fairly common problem.
Very sad and unfortunate for all of us but I think those with MS can get a large range of symptoms most of which the medics can do little or nothing about other than note and track. My one big one is problems with my right leg and not being able to walk for long or very far. The other problems are to do with bladder and bowel. With my main symptoms I try to self manage and e.g have yet to go down the Botox route. Sorry to sound negative but life with MS is such that it doesn’t make much difference whether the medics identify symptoms as being caused by MS or not.
I do think you should ask about getting another MRI at the centre where you were diagnosed. I get an annual one with the idea being that any new lesions could be grounds for changing my DMT to something more effective.
Try Charing Cross Hospital (Imperial College NHS Trust).