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New on here - scared and feeling lonely

Hi all. Sorry this is a long post I’ve been lurking on this site in the small hours for a few days now plucking up the courage to register! I seem to be slightly older than other new posters - late 40s and feel I should be strong enough to deal with whatever life throws at me but just know I can’t right now! I have been having severe vertigo and balance problems intermittently for many years and had various options diagnosed. In the late 1990s I got a diagnosis of BPPV and had the Epley Manouvre done. The spinning and vertigo did clear up for a few years but my balance was still shot. Over the years I have been back and forth to the docs with various balance symptoms which appear to reoccur at broadly 9-13 month intervals with spells when I feel normal in between. There have been changes at my docs in the last 18 months due to retirements and I really thought the ‘new’ GP I saw last December had it cracked -silent migraines. I was prescribed propranolol and got on with things until I suddenly had a major dizzy spell which left me with a numb head and tingling arms. Suspecting a reaction to the propranolol I was taken off them. But the tingling in my arms and numb head didn’t subside. Feeling to be made I was a ‘bit of a freak and making it up’ and following yet another change of GP I just got on with things as best I could and then around February this year everything just seemed to clear up so I forgot about it. Roll forward to about three weeks ago and the whole think flared up again only worse - very numb feet, a tingling sensation in my forearms, calves and lower back plus across my scalp, forehead and into my nose, the best way to describe it is like having an army of ants crawling over these parts of my body. My balance is shot and I had someone on the tube today say to his travelling companion that he thought I was drunk I was weaving so much when I walked. Plus the tiredness is a real challenge as I feel I need to sleep so much, keeping up a normal appearance at work is hard. Anyway I went to my GP last week (now no permanent docs at surgery, just long term locums) who looked at me like I was mad, said it didn’t sound serious or like BPPV had flared back up and sent me for blood tests. While the nurse was taking my bloods I caught sight of his notes - suspect MS, do routine bloods but call in once results back. OMG!!! Not yet plucked the courage to tell anyone else (not even hubby) and know it may not be the final diagnosis but having now looked at various things on this site I know it could be a possibility. Is it normal to hide this at the start? How do you tell the person closest to you what you saw on screen? Should I say anything to my boss or try to cope and pretend I am not feeling so rough? I’m not prone to self pity and have a ‘glass half full’ attitude to life but seeing those words really hit me hard. Sorry for rambling and for reading this to the end.

Hi Susie, I’m going through the limboland of diagnosis myself (first neuro appointment in just over a week) and just thought I’d say welcome and well done for registering here! It does take courage to take even such a small action, but by doing that you are really supporting yourself. I’m surprised that GPs hide these things! I’m curious to know what mine has written, though he said possibly ME/CFS to me and has referred me to the neurologist. I’m being quite open with my hubby - it helps that the GP said something, at least. It has helped reduce his anger and frustration at me for being so forgetful and tired all the time (not to mention the other long-ish list of symptoms that hubby doesn’t necessarily notice). I can’t comment on work as I’m self-employed, working at home, but don’t pretend to feel better than you do, that doesn’t really serve anyone, does it? Wishing you well and good luck with the diagnostic process…I wish you patience for that too! :heart:

Hi Susie, what a worry all this must be for you, I’m a relatively new poster on forum also, and am undiagnosed, got my first neuro appt soon. It must have been such a shock for you to have seen the GPs notes suspecting MS, but there could be a number of other reasons for your symptoms and hopefully your GP will be thorough and help you get some answers. It seems that to get to a diagnosis of MS is a long process of eliminating every other possible cause so you might not get some answers for quite a while. It is a very worrying and lonely time, you’ve taken the brave step of posting on the forum which is great but it maybe would help to talk to someone? Only you can decide that but I found it helpful to confide in my nearest and dearest. Like you I’ve a glass half full attitude to life, it defo helps to try and be positive, be kind to yourself and take care, Lucy x

Thank you for posting, Unfortunatley the Doctors are rubbish when it comes ot this, they wont tell you what they suspect they will run the tests, If he suspects MS and sent for bloods he would refer you to a nuro. What important right now is not to worry about what was written, the brain is so complex it could be 1000s of things. I know its tough but everyone here will help you. You cant prepare for a dx of MS or anything else really, these types of things are ones of which we deal with it when it happens. I would tell your husband though because he will support you, If it wasnt for my wife I dont know how I would have coped, I only told a couple of my friends and a few members of the family. And when I finanlly told everyone all I got was, is it hereditry, because people are selfish. Smile and each day your not dizzy is a great day. good luck

Hi Susie

Try not to panic, as you’ve probably picked up on here, MS can be really difficult to diagnose. At lease your GP is pointing in the right direction for getting things sorted out for you, I hope you will ask for a referral if your bloods are all fine (I was initially tested for B12 deficiency when I told a gp I had difficulty walking), it was later when I feel that my osteo wrote to surgery insisting I needed an MRI.

Good luck and remember, if it is MS it’s not good BUT it could be a whole lot worse! Blood tests won’t lead to an MS diagnosis anyway but it gives you a starting point with this doctor

Take care

Sonia x

You are not on your own, I am an older visiter to this site too and had loads of help and support. Its a great place.

xx

All. Thank you so much for reaching out and taking the trouble to reply, it is a great comfort. Took a half day today to catch up on jobs, got home sat with a cuppa and went to sleep! I fear it will be a Long road to get answers but at least I feel there is support out there now. Still pondering on when/how to tell hubby but I know I need to - perhaps this weekend. Hope you all gave a restful weekend.

I’m sorry I don’t have anything factual to contribute, just that I am sending you hugs and good wishes.

I agree with Tom C, I would definitely tell your husband. It will probably make you feel a little better and less lonely. He would probably hate to think of you going through this turmoil all by yourself.

Take care of yourself xxx

It is a blessing that we don’t know what the GP suspects half to time we go to the surgery! And we mostly never find out, because whatever they suspected goes away or turns out to be something harmless or fixable or both.

You can’t put the toothpaste back in the tube, obviously - you saw what you saw and that will prey on your mind, of course. But the process of getting a dx of anything is a process of elimination, and there are often a lot of things to be eliminated along the way that would have kept us awake at night if we had had any idea that they were on the suspect list in the first place. It soudns as though your GP sees MS as one of thost things that needs to be considered in your case. That is NOT a diagnosis. You know all this already. But it is a different matter persuading yourself to take comfort from it, I know. Please do try, though. At least it sounds as though you have someone on the case who is looking at your troubles a little more broadly. I do hope that you get to the bottom of it all soon. In the meantime, please try to pace yourself emotionally and let the thing play out without it taking too much of an emotional toll on you.

Good luck.

Alison

All

Thanks again for to those that have replied.

A bit of an update - I have private medical insurance and have opted to see the neurologist privately after my GP advised the wait could be as long as 16 weeks in my area so hopefully I will get that first appointment in before Christmas.

I’ve had to tell my boss after I ended up sobbing at work and am telling husband tonight - yes, I know, it has been a long time coming but I wanted to feel composed enough to tell him everything, including about the symptoms he just doesn’t realise I am suffering (he knows somethings up but I do try to put up a good show and hide what I can - stupid, I know, butI guess that was the way I was brought up!).

Except for the odd glitch, emotionally I feel a lot more at ease with whatever the diagnosis may end up being - I can’t change it either way - if it isn’t MS then I know it is something but one step at a time.

Take care all, have a good week.

S

good luck and take care,

Catherine xx