Feeling a bit hopeless.

New diagnosis and before diagnosis
1

Hi Limbolanders,

Hope you are all as well as you can be.

I’m feeling a bit hopeless today. I got my MRI results last week which showed some nerve damage which could be causing the problems with my legs (but I do have a curvature of the spine - so this is no suprise to me) but nothing else. A blessing and a curse! My neurologist said in the letter that it would be ‘sensible’ to discuss this and I am seeing him mid June.

Recently the problems with my eyes have been getting worse. I am constantly accompanied by flashing spots and LOTS of floaters which are very distracting.

I have also got back the weakness, fatigue, memory loss, nausea and worst of all dizziness! I am back at uni at the moment and trying to cope the best I can (but don’t feel like I’m coping at all really).

On a side note since I have been feeling poorly I have developed TONNES of spider veins everywhere (I’m 22). As well as some episodes of patches of bleeding under the skin. I know spider veins are quite normal but going from having none to being covered in them in the period I have been ill I thought was worth mentioning.

I am basically expecting to see the neuro in June and being told it’s not a neurological problem. Anticipating that, I went back to the Doctor today to take another route. What is it about Doctors that make you feel so stupid? My Doctor basically implied that he thought it was probably a ‘lifestyle’ problem. I asked him if there was anyone else he could refer me to. “yeah but who?” was the reply. I asked if my vit D was checked originally as I work for a cosmetics company and always wear a 40SPF and he is checking that (but I think to basically satisfy me).

I left and got into the car and just sobbed. I’m really trying my best to get on with things and continue with University. I am trying to be proactive and get it sorted and I’m being constantly dismissed. Daily life is so hard when you feel like you’re on a ship :frowning: I don’t know what to do and where to turn to next : (

Sorry for the rant - I know people have it much worse than me.

Emma x

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Sorry that you’re feeling so rough Emma :frowning: I think that you should give your neuro’s secretary a call and ask them to tell the neuro about your spider veins and subcutaneous bleeds - it may be an important clue to what’s going on. I can’t remember if you’ve seen an ophthalmologist? If you haven’t, then that’s definitely someone who your GP should be referring you to. That “lifestyle” comment was out of order - unless you’re out drinking and partying most nights, then he/she had no call to make that assumption. When you get some answers, I hope you rub his/her nose in it - and make an official complaint! I hope the neuro comes through for you. Karen x

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Thank you Karen :(. Would I not sound a bit silly ringing her and telling her? Or is that commonplace? I’ve never been under a consultant before! I have been referred to an opthalmologist a few weeks ago under the instructions of my optician but have had no appointment letter as of yet. I know it’s so frustrating especially as, like many of us since being ill ive made such a concious effort to improve my diet, take supplements, even drink more water! I’d love to go partying if I could stay awake past 6pm haha. It means such a lot to be able to rant on here :slight_smile: Emma x

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If you’re seeing the neuro within the next few weeks, then it may not be necessary, but if you are coming out in spider veins all over then I think they should know sooner rather than later. All you have to say is that something weird has been happening, you’re not sure if it’s important or not, but that you thought maybe that the neuro should know. I think you should chase the ophthalmology appointment. I don’t get why you can’t be referred to a local walk-in clinic though: better to see someone when your symptoms are active and there’s no telling how long they’ll last. Kx