MS or just all in ya head

Brain and nerves
1

I've got all these weird symptoms that two of my GPs spoke to me about and said I need to see neurologist for as they are often linked and one mentioned MS. I stupidly said to the other that MS had been mentioned and when they sent the referal letter out they put in that 'I thought' I had MS. So I gets an appt with a neuro and first thing she says is you think you've got MS I see by the letter why? I was a bit dumbfounded and to be honest I get scared of going to Drs of any kind and tried in my numpty way to put her straight but this as everything else went in one ear and out of the other. So she asks these questions without so much as looking at myself or my partner at the time and was so dismissive of all that was said to her. She examined me and said I'd hear from her. Anyway I never got an MRI which she suggested and as we weren't happy with her rudeness and approach asked my GP for a second opinion. They've let me have one and I've just come from the appt. I'm so upset you wouldn't believe. His very first words to me was so why do you want a second opinion after seeing my college. My college has sent me a letter blah blah blah. Straight away I and my ex partner who took me knew it wasn't going to be good. I am disabled and have been for 11 years know since giving birth to my son and being unable to walk. Anyway those probs aside which I know and understand like the back of my hand are completely sorted as far as pain relief and me understanding my body so well that as soon as I open my eyes I would know what sort of day i was going to have.

Anyway my appt today, was let me see what my college had to say as he referred back to her letter to him.

All I said was I just want to know what's wrong with me as all these odd things going on I feel like I'm going nuts to which he said and that's it. It's all on my head! Asked me if I'm down and low in myself. To which I was so tempted to say no mate I'm on top of the world in constant pain can't do loads of 'normal' things as I use to with my children or myself and then on top of all that I have all these weird random things go on. I was very good I didn't get sacastic, I just replied yes and as he started with and this is the problem. I'm not the person to help you. You need to see someone else about your feeling and once your feeling are sorted out these things will go!

So in other words all this is in my head! He then said I will give you what you want which is an MRI after he relised I hadn't had one before even though his college had stated I had!

I'm so upset. Keep bursting into tears and just don't know what to do and where to go. I don't see any friends or relatives anymore as they don't believe I have this going on and then he says that today.

We were and still are totally gob smacked!

Has anyone else experienced this sort of thing? Is there any way I can go private? I know it will cost but will be worth it to find out what's going on? If it's MS it's MS if it's something else it's something else I really just want answers so I can hopefully get the right advice or treatment.

PS sorry it's so long winded.

2

Hi AJF, I was largely dismissed, when I first started having weird neuro symptoms, you have my sympathy. While you know that nobody here can diagnose you, there'll be loads of us who know what you're going through.

Yes, you can go private, I did it, when I was told there was nothing wrong with me. I was finally diagnosed with MS, in 2004. While it's a huge deal to know that you've got something progressive and incurable, it's worse to NOT know. Ask your GP to refer you to a neurologist, for a private consultation. You will be asked about your experience, you will be given very simple, straight forward tests of strength, coordination, walking ability(if any). Typically, a consultation will be 45-60 minutes. If you're in the UK, you can then be placed back into the NHS, for any further tests, deemed necessary, I don't know how it works elsewhere. If at all possible, see if you're referring Dr can send you away from wherever the 2 previous, appalling Drs are based. I always advise anyone with ongoing health problems, especially undiagnosed, to record as much as possible about symptoms, dates, worries... anything else you feel is relevant. Whatever you're dealing with, answers will help, as you know. Good luck.

3

Thank you so much for your reply. It's an odd one as you don't want to be having anything but you know your body and what's what don't you. Not that you can diagnose yourself, just to know there is something or things amiss and you go to these people for help and you get treated so badly. As my son said to me, I thought it was a second opinion not all about what the first one said/wrote or in her case didn't. We're going to look into private now even though he's 'giving me what I want' his words an MRI which I haven't asked for anyway. Seeing these comments and questions on here makes us realise I'm not alone but you do feel so lonely with it don't you!

Can I ask? Did you or do you have any pins and needles and if so how long does it last or happen?

Hope your enjoying this beautiful day x

4

Hi, I really feel for you. I was diagnosed with M.E back in the 90's. Then with hypothyroidism. Even with both these diagnosis I've been treated like I should feel fine and that it's all in my head. Recently because of a couple of new symptoms I've been referred for an mri. Typically I'm feeling quite well at the mo and the mri will probably show normal results. However, I definitely have bad days/weeks and I know they're not in my head. On good says I squeeze the best out of life and truly appreciate feeling well. MS never used to be believed until mri showed evidence. Just believe in yourself and keep fighting. You deserve to feel well, or at least be believed x

5

Check into lyme disease and the co-hosts such as bartonella. The symptoms mimic ms. A family member has dealt with not knowing what was wrong with him for a long time. The doctors first thought ms but tests came back negative. They finally discovered it was lyme.