Terrified it is MS

I’m 35 year old male and suffer with health anxiety. 3 weeks ago I had dizzy spells lasting seconds but this continued til doctor said I had labrynthitis. I then had a headache on the right side of my head behind my eye and was really light headed which has continued til this day. I am now suffering with burning sensations over my back, both legs, and right arm, weakness and severe fatigue My right arm falls asleep in bed since I can remember and now its painful and wakes me up alot. During my manic episode due to these symptoms I went to A&E they did ct scan that came back normal and some bloods that also came back ok. I also had headache, that sent severe pain down my spine that lasted a week a few years ago. Every symptom got worse, anxiety is on over drive. Had to go back to doctors that said they would refer me to have an urgent mri but the wait is long. I then couldn’t breath or swallow but not in an anxious kind of way so had to go to a&e again and they did a neuro examination in which she said it was ok and unlikely to be my worse fears. Since then the symptoms are unbearable, I can’t sleep, eat, and I’m constantly researching ms to re assure me but it’s not working. I’ve been put on mirtazapine 30mg to help my mood because the uncertainty and pain is unbearable and I would rather end it if honest. So now I’m waiting for the mri scan to be done but I know the outcome. For the last 5 years on and off I’ve had the ms hug with headache and have been to the doctors only to be told its anxiety. I just know the difference between anxiety and something else. The burning is insane, my hands and feet are freezing, I cant sleep or function, my relationship is under so much stress and I feel guilty I’m feeling these thoughts. Is this ms or anxiety or both??? I would like the old me back. Please tell me it’s not like this all the time??? I can’t handle that. Also to read it’s more aggressive in men and the symptoms I have and history with ms hug is unreal. Some one please help! I’m desperate.

Gosh you are anxious aren’t you?! I thought I had priority on that one as I have been anxious about having MS for just over 20 years now ha! I thought I had made it when the Older Adults consultant said I had a positive scan with multiple lesions (all on my brain) but oh no - Neurologists know there stuff, He wants at least one more lesion, a lumbar puncture and a few more boxes ticked. And I think I will go to my grave still not knowing. Now I am scared I may be dementing so you see you are not the only one! So firstly you have absolutely NO evidence you have MS yet. Like you I had a hunch and some symptoms - the electric shock down my spine, pins and needles, shaking finger - that sort of thing. Clearly a CT scan will not show up anything re MS so that means nothing and now you are waiting for MRI, which is good. You WILL have to wait patiently for the scan or go private. And you will have to wait patiently for the results. We all have to. You really need to try and stop this self diagnosis. Possibly you do have MS but maybe you are completely wrong. I do have a significant problem with my mental health and I need to take medication for that. This includes a mood stabiliser, anti-depressant and something for generalised anxiety. In your shoes I would be talking with my doctor about how I could best manage my feelings of anxiety/possible depression until you at least have a clearer picture of what is going on from this round of investigation, This whole thing could carry on for years especially if you cannot let it drop if your results come back clear, In my case I was unable to let go of it because clinical signs were found upon examination and I had a lesion and other small spots on the scan, So it has always been with me through every ache and pain I have had, I hope this is not for you. Perhaps foryour partner’s sake you need to find an external source of support to deal with this as families can find it very hard to deal with - or so I have learned from experience. Good luck,

Hello Apay.

Yep, your mind is in overdrive and even though there may be a good reason for your symptoms, your stress levels are through the roof…You dont need me to tell you that I`m sure!

Try some CBT or or kind of mind over matter lessons.

You`ve done the Dr Google thing, so let it go…stop reading more…this is making you worse and worse.

It took a long time to diagnose my condition. I know the angst that goes with not knowing.

Going private for an MRI runs into around £800…and even that could be more now.

Try to find a way to control your thoughts.

Boudsx

I’m just trying to educate myself on everything ms. I know i can’t do anything about it but it does stop me from doing things like work etc as it’s all I can think about. I’ve been to my doctor and I’m on miztrazine which is helping the low mood and panic. It’s the same with everyone I guess I just need to know so I can get on the meds. I’ve been going through this (flare up) for over 3 weeks with no give its just draining. Not sure what else it would be if not ms? 20 years that’s a long time to be waiting, I dont know how it works with time frames and your next scan to see if there is a further lesion? I’m starting cbt thursday and trying to stay positive but it’s very hard to get it out of your head when the pain in there to remind you 24/7 as I’m sure you are aware. I eat healthy, don’t drink or smoke and I gym so not sure what else I can be doing better. I’m naturally stressed all the time which is not ideal cbt will help. Anyway thanks for your response, its nice to talk to others in the same position. A

I would pay for private but not sure I’ll have the money. You just think of the stigma attached, and read all different kind of stories and how it can seem quite bleak. Also want to educate myself. So reading on here helps but then doesn’t help. I have CBT Thursday and on some meds for mood which has helped so an extent. Just would like to know as life seems to be on hold for the time being. :frowning: Thanks for your response.

Hey Apay,

How did your CBT go? How are you feeling?

Any news on when your MRI is?

I know it’s all so scary as I feel exactly the same. Being getting quite a lot of symptoms too and it’s they don’t seem to be shifting. They are constantly there and are also getting worse.

I hope that the CBT helped and you have a date for your MRI.

Sarah

Hey Apay - as others have said stop reading Dr Google. Or if you have to only on reptubable sites for reliable evidence based information. Like NICE guidelines for MS which is the doctors bible or NHS sites are good.

Whenever I am stressed or anxious - which I’m sure applies to a lot of us I phone the Samaritans- not because I want to kill myself but because I want to talk to someone about what’s going on. It is a free number even from mobiles and they are available 24/7. Can’t solve the problem but usually feel better after the call

keep safe and really hope things improve for you

Min xx

So OK Min forgot to put the telephone number on for the Samaritans !!! It’s 116123

xx

Hi sarah, thankyou for your response. I know exactly how you feel. I’m on a waiting list for cbt, could take 2 months so it’s currently a no go and could do with some distractions, strategies, break down methods like day by day instead of thinking about the end result. I was put on mirtazapine so I could sleep but had to stop taking them after a week as they made me feel awful. I’m quite sensitive to what goes in my body, so doing in natural. So mood has returned super upset, thinking the worst outcome. I had such a good day yesterday is regards to mood and pain etc. Last night I couldn’t sleep and had sleep paralysis which is horrific. I can no longer bath as the heat flares the pressure in my back and makes me feel like I’m vibrating. I’m trying to be so positive but I just feel as if I won’t be able to continue going skiing running drinking, hot holidays etc. Its all too much and I’m a bad partner atm just being a recluse being sad. I have a private neuro appointment on weds 3pm with the same doctor that was doing the nhs appointment but this is just for the examination and then will have to wait for an MRI. When is your mri? How far are you with all of this? Unfortunately I know my outcome deep down. I had to right up all my symptoms for the neuro which cemented everything urgh:( How are you coping ? Sorry for the rant. A

Hi min, thanks for the message. It is easier said than done with dr google,and what I’ve read in unfortunately stuck in my head. I’m trying to distract myself. I have called the samaritans a few times, they are helpful for listening. I don’t have many friends unfortunately. So needing that 2 way conversation :slight_smile: I’ll have a look at the nice website, thanks for suggesting and reaching out. A

I’ve been getting blurry vision in my right eye it comes and goes. Urgency to urinate. Numb right hand when I sleep waking me up 6 or 7 times last night. Weak legs and shakey feeling Random headaches coming and going Stiff sore neck comes and goes All limbs feel like lead weights. Super shakey. Brain fog, couldnt spell much yesterday when trying to work. I do have my mri scans tomorrow morning head and cervical spine privately. I haven’t seen a neuro properly yet and get the results sent to my gp in 2 working days! Not sure how it works, I’m guessing the doctor will read me the report. I still have my appointment with nhs in may to see a neuro. Not sure how to play it, Or how it works I just need answers as a lot of people on here. A

just out of interest, how much is it costing? Have you checked it`s still on?

Good luck #

Boudsx

It was £398 for 2 areas. Was a non peak time. Was £398 for each scan during peak. Each place has a different peak and non peak time. Thanks Bouds

So results came back. On my mri they only found 2 tiny dots or my frontal lobes that don’t look of any concern and degenerative c2/c3 vertibre which could be causing my headache and neck pain. Apart from that, nothing else was said. I didn’t have my lower back scanned just head and cervical spine but apparently nothing to be seen apart from the above. However still having symptoms so I’m guessing further tests. I have however tried to get a second opinion on this and they will get back to me as not sure neurologist is an ms specialist.

Hi, never thought there would be peak and off peak rates for MRIs! Like getting a bus!

So you`re still no wiser…hang in there chuck.

Boudsx

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Just an update, I have a lumbar and thoracic mri tomorrow afternoon as nothing was found on my brain and cervical. Had an eye exam as one pupil is bigger than the other at times but said he couldn’t find anything actively wrong with the eye or vision. So can’t see optic nerve inflamation. Legs feels like are cramping and tight pretty much all the time. And the hand numbness is still waking me up 7 times a night. Everything else seems to have died down. Doctor prescribed amitriptyline for pins and numbness in had during the night! Think I might just give them a miss for now as I suffer with side effects of pretty much everything ! Any else suffer from optic neuritis? How did it resolve ? Also as my brain is clear and they find on my spinal cord then it will likely be ppms I’m guessing.

Let us know the results of the new tests.

Boudsx

I’ve had the results back and they don’t make sense as all in neuro language, I have some slight disc bulges causing a lesion in one area. However cord signal normal and no other VISIBLE issues of concern. So back to square one. Have given my images to my neuro for my appointment (telephone) in may. I know with ppms it’s quite hard to find lesions or diagnose. I didn’t use contrast due:( Anyways still feeling the same as I was, if I had felt better I would have dropped it! Anyone any good at breaking and understanding neuro reports ? I’ve tried to google but still no sense. Thanks A

Hey there

I’m in the same shoes. ( excuse my english, i’m not native speaker).,i’m a male 34 years old from North Africa studying in Malaysia

so basically i was diagnosed with disc bulge in my back in 2017, i got so stressed because of it because i didn’t know what it was exactly so it scated me , and started to have those weird symptoms, burning sensations mostly, in my legs, thighs, arms , chest , and stomack, pins feeling somtimes in my head or hands, it’s so random. so i told the Dr and he told me we need to do MRI so we can rule out MS, i did MRI for my spine only and it came back clear, he game anti depresants and asked me to come back after 3 months, i didn’t come back to him because i didn’t trust him

so my symptoms continues for one year, i went to another neurlogist and i told her abouut my story, she told me u did MRI and your symptoms don’t have the pattern of MS, so just let it go and she asked me to check a pyshchatrist because it might be stress !

so now we’re in 2020, i still have the sympotoms , mostly sensory, no eye problems, no weakness, nothing serious but mostly sensory sensations, i have neck stifnnes too since 2017. and lump in the throat feeling but i ear and drink normally. and i think it’s related to mucles contraction.

so i don’t know what to do else, thinking of checking a 3rd opinion, i’m living in hell. i miss my old healthy self.

so Apay, you’r saying that Drs are saying you don’t have MS regarding all those symptoms ?

Hey Bahaa I sorry you’re going through this unsure time at the moment. I think a lot of it could be stress that could be adding to your symptoms. Did you go to see a psychiatrist? The neuro hasn’t said anything to me I just had the report through from my private scans explaining the findings but all In neuro language so i don’t understand it. However it does summarise and say nothing of concern apart from some mild disc bulges. So who knows at the moment, have an appointment with a neuro on the 6th of may to go through them properly with symptoms. It could be a lot of things whilst do you my research, however doesn’t make it any easier to deal with the not knowing. If you’re that panicked I’d go and see a neuro and get re scanned, will maybe put your mind at rest but defo see a psychiatrist is could just be stress. It might not be!