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Feeling broken physically and mentally but medically fine

I think I’ve hit breaking point. My body feels like a split personality: I feel physically and mentally broken but somehow everything has stayed together.

For the last few months I’ve never felt so ill and it all started quickly. The fatigue has been so intense. From the moment I wake up I feel exhausted until the point of where I can’t stay awake anymore and fall asleep at the table, on my work laptop - anywhere. I just can’t fight it. I’ve had painful pins & needles in my arms and legs, eyesight loss and numbness / weakness mostly concentrated down one side of my body. My back has the feeling of goosebumps / tingling all over my spine. My thinking and memory had made me feel like I’m going insane. I can use my bank card in one shop and then use it again in 10 minutes and completely forget my pin. The detail of conversations I have with my family just seem to get lost in my head. Perhaps it’s been the fatigue making the concentration difficult. My weak leg jerks and sometimes just freezes when walking and I can’t get it to move. Sometimes I can physically see the muscles twitching in my arm, leg and hand under the skin (like a baby moving in a pregnant woman). My legs are numb below my knee and I get stabbing / burning pains. I even put off being intermate with my husband because I’m so numb (and exhausted).

But despite feeling so unwell and all these symptoms, every test I’ve had so far is clear. I know this is good news but it’s also difficult to understand. My bloods and MRI scans indicate that everything is fine and dandy but I feel quite the opposite. There’s no medical evidence why I’ve very suddenly become so unwell. I’ve gone from being able to run 5k regularly to hardly being able to walk more than 10 minutes without being exhausted and nearly falling over because of my leg. The neurologist said my scans were normal so I guess I don’t even have a dot showing. I got the impression he was expecting my brain to light up like a Christmas tree but it seems quite the opposite. He told me he suspected MS initially but I guess that’s no longer the case?

I know that clear scans are a good sign, but how can I have felt so unwell and continue to have issues but there’s nothing. My job has severely suffered over the last few months whilst I’ve tried to carry on the best I can.

I’ve never suffered with depression or anxiety but I’m now starting to question my sanity. I’m generally an upbeat, ‘glass half full’ type of person but I feel this has started to crush me. I think I’d of taken the clear results more positively if I was feeling back to my normal self but I’m not. If it was a couple of weeks of feeling rubbish I’d probably put it down to ‘one of those things’. The fatigue is lifting but I’m still numb and I have no answers. How can you try to get back on with your life when you’re in pain and can’t feel your legs? The neurologist has suggested a watch and wait approach to see if things get worse or improve in time. He’s been really good and listened to me but there’s no clinical findings so I fully understand his approach.

I know there’s nothing anyone on here can do, but I feel that this forum is about the only place people might understand how I’m feeling. If you break your leg the people around you know what’s wrong but with this it’s not something people understand. Im sure people around me think I’m making it up and should be looking on the bright side.

I’m feeling like an absolute emotional wreck, again something that’s also rather alien to me. Hopefully I will get back to my normal self soon because quite honestly, I never want to feel like this again.

Thanks for being my agony aunt.

Did you have a MRI on your spine as well of your head as you can get legions on your spine. One thing that you can do is if you still feel very ill go back to your doctor and ask for other tests, as there are other illnesses that have the same symptoms as MS it seems that you have the all clear for MS which is good. Good luck Kay

Hello

Has anyone suggested Functional Neurological Disorder (FND)? Have a look at What Is FND - FND Hope International

Or Antiphospholid Syndrome? See Antiphospholipid syndrome (APS) - NHS (also known as Hughes or Sticky Blood Syndrome).

And have you had blood tests for Vitamins D and B12?

I’m so sorry you are suffering as you are. It must make you feel very alone with it. You are very welcome to this forum. Unfortunately, getting an appropriate diagnosis can take some people a very long time, and make them question their sanity as their symptoms just don’t fit together with clinical evidence.

Best of luck.

Sue

A scan is only a scan. It is part of the diagnostic process, and usually a very important part, but the scanner is no more infallible than any other human artifact - neurologists were diagnosing people with MS long before MRI scanners were invented. SO yes, for sure, it’s good and reassuring news that your scan didn’t light up like a Christmas tree, just as you say. But that doesn’t suddenly mean that there aren’t real problems that your neurologist, like you, will want to get to the bottom of. Maybe it will be a matter of watching and waiting, maybe there will be more investigations at this stage. But don’t despair - people aren’t suddenly going to conclude that there’s nothing the matter with you. Time, as they say is the best diagnostician. Even if you don’t know what’s the matter right now, time will usually tell. Alison

Please contact Access to Work; Get support in work if you have a disability or health condition (Access to Work) - GOV.UK loads of help available. Like taxis to and from; you only pay equivalent public transport fare; helper worker to do parts of your job; because of your illness you find difficult.

You do not need to be diagnosed to get this; loads more available.

George