Please can anyone help , I need to talk about my symptoms to anyone,,,,

Hi , I’m 44, I’ve been really ill. I have been diagnosed with FM, although my symptoms have FM , I’m more like MS, in fact nearly all my symptoms point to MS , I don’t know anything much About MS. Only the symptoms I don’t know anyone that has MS, but do know people with FM. I’m due to see a endocrinologist in March and a neurologist in March .

Was diagnosed by a rheumatologist in January. I have so many symptoms of Ms. Really would like to speak with people find out if they are like me. As I feel so confused and MS is so scary I want to know so desperately because at least I may be able to get help. The scariest things have happened to me but don’t know of these symptoms happening to people with FM.

I have been watching the blogs on my FM site to see if people experience the symptoms I have , I haven’t come across any yet. I’m getting desperate the two specialists I’ve spoken to have given me all but ten minuets each of their time. I’ve had little conversation and I don’t know how to go on.

My doctor hasn’t given me anything for FM. I’m on beaterblockers but that’s only be use of a extreme eposode I was taken to hospital for. I don’t actually know many people on beaterblockers for FM. I know this sounds crazy but I actually feel ok at the moment.

People with FM feel ill pretty much most of the time. So what’s wrong with me. I was unbelievably ill, doctor thinks I’ve got epilepsy. I had extreme upper pain couldn’t speak burning sensations peeing myself couldn’t move, loss of limb control extreme fatigue blurred vision I have eye problems. Legs don’t feel like my own somedays but nothing to what I have had, my legs just give way when I’m walking down the street then just feel disconnected like there false legs lol.

Burning sensations on my right calf. The worst thing was this crushing pain in my chest my hole posture changed and I was hunched over and my chest felt like it was caving in. I had air hunger and I looked pretty terrible I lost a stone in three weeks.i had convulsive shaking I looked like I had an epileptic fit. Before this came on I had a vibrating feeling inside me, like a mobile phone going off inside me on buzz.

This went on for months then I started forgetting things this like I say all happened over months before this seizure like eposode it’s been nearly two months and I feel like I’m recovering . Oh I wish I could get answers I’m so worried that the specialists will miss something and have wrongly diagnosed me. Pleeese help x

I paid for a private neuro appointment and then tests were carried out on the NHS quickly, my advice if you can is to do this and hopefully get some answers.

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Hello and welcome :slight_smile: I found it very tricky to read your post on my phone so I’ve asked a mod to put some line breaks into it to help. I’ll reply properly later on - either when there are some gaps or if I get to my laptop before that! From what I read, I picked up that you are very anxious so it might help to know that MS is not a medical emergency. Most of us live a normal life span and rarely if ever get anything wrong with us that neurologists are too bothered about! Karen x

Flippin’ 'eck! Now that was quick!!! Thank you mod/admin :slight_smile: I’ll have a proper read now :slight_smile: Kx

Hey Rizzo, sometimes, just like to show that I’m paying attention. The coffee helps.

Stewart (admin)

Thank you , it’s the siezure type eposode that scares me, it took so long to get better. But thanks . I’m due to see the nuro on the 20th march , x

I think there are two things I can advise that would help you. The first is to stop panicking. You are going to see two more specialists and they should certainly be able to work out what’s going on between them. Also, the hospital discharged you - it is very unlikely therefore that you have something urgent or life threatening wrong with you. The second thing is that it is difficult to work out when each of the symptoms started and how long each lasted for. The neurologist will prefer a concise, simple list to work from so I recommend that you write everything down in order, focus on the main things, and do a sort of time-line. In general, you are more likely to have a productive appointment if you are calm, well prepared and can give the neuro the information he/she needs objectively and without waffling - a bit like you were another doctor discussing a patient! There are actually a fair number of things that might have caused your symptoms, some of which are relatively easy to treat. The fact you are now on the mend may even mean that it was a one off event and will never happen again. So try and keep an open mind and get prepared for your appointments - hopefully you’ll get some answers very soon. Karen x

Re the seizure - the beta blockers should help with that - at least until you see the neuro and he/she can say whether you need them any more or if something else might be better. Kx

Hi Jo,

saw you had posted on my thread but thought it would be better to say hi on yours. I can see you are not really in a good place just now but hang on in there.

The burning pain you mentioned would seem to be in line with FM. My hubby had a friend with the condition and said she was in pain all of the time with some times worse than others, and it was a burning pain. I don’t really know a great deal else about the conditon to be honest, and i’m still learning things about MS on a daily basis.

I guess its just a case of having to be patient which i know is not easy at times.

Hope you are ok (ish)

keep smiling,


Samm xx

Thank you , I was really anxious yesterday about it all. I’m usually calm n composed but I’ve had such a hard time with it all. I’ve lost one of my jobs as a support worker but managed to hold onto my carers job. Think trying to stay calm has sent me off it a bit as I don’t have anyone much to talk with besides my Mom. She has been an absolute Rock, she is 77 and is the most loveliest person . I can’t say to much as I don’t want her to be ill or worried over me. Although she is always there and helped so much. I have two kids one 25 one 16, both sitting exams so don’t want them to worry too. So yep I’m kinda bottling it up , so I prob sound pretty neurotic at the moment . But thanks guys for listening , most people whom know me know I’m not a sickly type moany person but this has really shook me up. Think it’s been hard too found it so debilitating , I have been freaked out by what I’ve read if MS, hoping I don’t have it but guess there’s a close change due to what most people in my life are saying, and freaked out over what’s happened. One friend thinks I’ve had a series if mini strokes. Another thinks I’ve got epilepsy brought on by something , these are balanced support workers seeing and knowing about conditions , x

I don’t know what to think really but, what I know of MS. It does sound close to that. , been diagnosed with maybe the wrong thing can be upsetting too because I may be looking at the wrong thing and be treated for the wrong condition