Would love some support & advise please


This is my 1st ever post although I’ve been a member for a few months. So far I’m not fully diagnosed but my neurologist has given a diagnosis of ‘probable MS’ based on my symptoms.

My first symptoms back in 1988 were sudden weakness in my legs. I’ve had pins & needles, fatigue, bladder problems, eye problems & walking problems on & off. I also have an inherited heart condition & have developed some severe problems additionally with my heart & am waiting an urgent heart op. Over recent years my symptoms have worsened MS wise & following a pretty big flare up nearly 2 years ago was seen by my neurologist. However my lumbar puncture was negative (I can’t have an MRI because I have a Defib in my chest). This February I had another huge flareup. Vertigo, visual problems, balance problems, fatigue, severe shaking etc & saw my neurologist again then. Haven’t been able to have another Lumber Puncture because am too ill with my heart probs so no full diagnosis & no support services.

Am now unable to walk more than a few feet without severe shaking & am having unbelieveable fatigue. I would so appreciate some support & also anyone’s advice on how to cope with the awful shaking & your experience of this horrid symptom & vertigo too. I’m feeling very isolated as I can’t give the energy to stay in contact with my friends as need to rest all afternoon to cope.

Thanks, Susie

Hi Susie, I am new to the site and don’t have any answers I’m afraid, but what I can tell you, is that in terms of fatigue, I really understand. Fatigue / tiredness does not cover it, but they are the only words we have to explain the symptom. People ask “how are you” and you say “really tired” and you get various versions of the same response “yeah, I’m exhausted” , “everyone gets tired” , “I wish I could lay in bed all day” or my personal favourite “you think you’re tired, you should try having kids to look after”. Of course after a while, you end up answering with “I’m ok” or “not bad”. The fatigue is so frustrating, it makes you want to cry. I hope it helps to know that you’re not alone, and that others really understand. Vertigo is something I get bad once or twice a year. I can do nothing of any use til it passes, which luckily for me is after a week or ten days. I agree, it’s really horrible, it makes my confusion so much worse. One thing I do know, after having symptoms for coming up to 15 years now (not as long as you by a long chalk) is that when things are really bad, your real friends make time to contact you, and find out how they can see you without you having to go through any extra pain, or use any of the energy of which we have precious little. I hope you find the advice and support you need from this site. I can tell, from your post, that you are struggling, but you are a strong lady, you’ve been fighting for years, and that’s tiring, but don’t give up, help and support is out there (and on here). Sending you love and positivity AmieLouise x

Hi AmieLouise,

Thanks for your lovely message. I know exactly what you mean about people asking how you are. The fatigue side is really hard to explain. Mine is like every ounce of energy is suddenly drained away & no matter how long you rest it won’t come back.

I also have to agree with you on finding out who your real friends are. Serious illness really sorts the ‘friends’ from your real friends. I’ve found the real friends are those who are prepared to adapt their lives to support you & also not put pressure on you to do what they think you 'should ’ be doing. Sadly you may find the ones you thought you could rely on are the very opposite. It’s disappointing when you are going through everything that you go through to get diagnosed. It’s often a lonely place to be before diagnosis so it’s really great to have people to chat to on the forum. MS is a very ‘individual’ illness so it’s great to chat to other folk who are experiencing similar symptoms.

Very best wishes,