In limbo and scared

Hi
I may not belong in this sight as I don’t know whether I have MS. I have all the symptoms, but clear brain MRI. Doctor says can’t be MS but has no other answers. Have explored all forms of migraine as a life long sufferer but not responding to any meds. Some days I feel good for 49 and can kick a ball around and enjoy my job, then I have an overwhelming sense of fatigue, double vision, poor coordination, everything slows down, affects speech and thinking. I have a constant tremor that gets worse when I feel worse and I get temporarily worse when I have a bath, hit shower or feel internally hot. My tremor can sometimes be notable to others and sometimes only to me. Some days I just hurt all over. Some days it intensifies my headaches and some days I get dizzy spells. I’ve had a numb patch in my leg now for a couple of years! I get a pain/tight pressure in my chest too.

May not be MS but don’t know where else to get advice. I may just not be coping with getting old!

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I am sorry that you are having such a miserable time of it - that sounds horrid.

And it doesn’t sound like just being 49 either (a distant memory for me, admittedly…)

There are plenty of people on this site who know from personal experience that it can take an awfully long time to get to the bottom of what ails. That is frustrating, but it does seem to be a feature of hard-to-pin-down neurological symptoms. They say that time is the best diagnostician. I hope that turns out to be the case for you.

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Hi kerrylhoward247

You certainly have a lot going on right now - and we understand how that feels. Trying to get an answer to “What the heck is wrong/going on with me?” can be a frustrating task, but stick with it, and this is a good place to vent/get some advice.

Can I ask what, if any, blood tests you have had done? Various deficiencies can cause some of these symptoms.

Aging certainly travels with a pack of not so welcome friends along for the ride just when other friends you would like to hold on to head south; and a number of conditions can cause these symptoms, unfortunately most require a fair bit of crossing off the list until you find the one that is left.

Was the MRI requested by your GP or a Neurologist? Was a spinal MRI also requested/conducted?

Visually Evoked Potential and Sensory Evoked Potential tests could help get a better overall picture. My VEPs showed that I have had Optic Neuritis at some point in the past (took a lot of rummaging down memory lane to discover that this was about the time I was getting ready to sit GCSE/O-Levels 40 ish years ago! At the time it was put down to too many late nights studying/needing glasses).

Before I was dx with MS, I was also referred to Rheumatology (various conditions there, auto-immune, connective tissue and vascular, that can have a similar list of symptoms to those above); also Endocrinology (Thyroid etc.); Pain Management Clinic(s) - you’ll end up with a who’s who of your Local Health Authority!

Hi just want to welcome you c
I have lesions on my Brian but still in limbo have had a clinically isolated syndrome

Thank you all for your responses.

Theresa, whilst I was in hospital the doctors requested an MRI but the neurologist was not wanting to pursue as she was convinced it was all migraine related. It was the doctor that requested a non contrast brain MRI as there were so many other concerns that were not responding to pain relief. To be honest I found the neurologist quite condescending, as someone who has suffered with migraines from early childhood.
It felt like she thought I was being dramatic.
I’ve been down the route of meniers about 10 years ago but that got ruled out as another form of migraine. I’ve always been ‘accident prone’ and went through a stage of complete blackouts in my teens which they thought was epilepsy but that got ruled out, instead they think it’s to do with my spine. Then 2 years ago, I was off with long covid for three months and since October this is the third time of being so fatigued and in pain and increased tremors etc etc. They have ruled out hormones, as although perimenopausal, the medication has made no difference. I have an underactive thyroid but that is under control. I am Factor V Leiden, so prone to blood clotting!
All I want is to know what it is I’m asking my body to fight. I love my job and want to be able to focus on that.
Reading everyone’s stories, it seems like such a battle to get listened to and diagnosed, one way or another.
Xx

Hope you get answers soon. I am factor V Leiden too never known anybody else with it.

Hi @kerrylhoward247
Sorry you’re having such a horrible time. As others have said, there are so many conditions that have crossover symptoms with MS, and a few that are worsened by heat, as you mentioned. I’m currently being evaluated for Postural Orthostatic Tachycardia Syndrome which can make having a shower or bath feel like you’ve just run a marathon. Also awaiting MRI results due to a lot of the symptoms you just mentioned.

I guess i’m saying this - these symptoms are not in your head, they are real. So keep going. I’d start by making a list of all your symptoms and roughly how long you’ve had each one and discuss it with your GP. If they are dismissive, try to see another GP. I had symptoms for 20-odd years until by chance I saw a locum GP at my practice a couple of years ago who suspected Fibromyalgia (because she was on the local council’s Fibromyalgia Board!), and got that ball rolling. Now waiting to see if I actually have MS, but it could also be other things, too many to name. And hey - I am also 49, that ain’t old :rofl: just feels like it sometimes. I’m not a neurologist, but it’s also worth bearing in mind that MS doesn’t show up on an MRI in 100% of cases. You mentioned you had a brain MRI, what about spine? You know your own body, it’s demoralising and frustrating as hell and can take years but don’t let them dismiss you.

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Thank you Gilders, reading everyone’s posts make you realise just how frustrating it appears to be for everybody before someone finally takes their concerns seriously. I’ve been referred back to neurology but it’s in triage, has been for 3 weeks!
I’ve been off again for the past week, extreme dizziness and more pin and needles this this time. It’s exactly the same but some aspects are, especially the fatigue and response to heat and for me the headaches and tremors!
I just want to know what I’m asking my body to fight and get on with my life.
I’m not depressed, although being poorly and off work gets me down, I’m not stressed, although playing a waiting game might make me! add this is my no means just migraines, I’ve had those all my life.
How does everyone help their families stop worrying about you before there is even anything to worry about?

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Really sorry to hear how it’s making you feel, but I get it. We’re in a similar boat right now. The only reason I got an MRI was because I collapsed 3 weeks ago and spent a few days in hospital. They did a neurological exam, which I failed, that’s the only reason an MRI was ordered. I’ve been going to the GP with MS symptoms for 20-odd years, which they latterly said was Fibro, but i’m not sure.

Regarding what to tell the family/kids - i’ve been playing it down as much as I can, I want to know what’s going on before I say anything. But it’s difficult when you walk like you’ve had 6 pints, slur your words and are constantly strapped to a BP monitor (requested by cardiology after my hospital visit)… at the moment i’ve just told everyone it’s a Fibro flare. Work is more difficult, because I was off for 3 weeks i’ve had to tell them the whole story so that I can work from home and keep HR off my back, they’ve obviously had to see the hospital and GP letters for confirmation. So I really hope we both get some answers soon, take care and let us know what’s happening :orange_heart: