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Need to vent

Most of you old timers (said with much affection) will recall my story but just a quick recap.

I had various neuro issues and saw a neuro a few times had 2 MRI’s bloods etc;. Neuro was an absolute ass if you remember so got referred to charring cross.

Saw a general neuro there who thought ?MS who then referred to MS specialist. They thought ?MS but as most of my symptoms were mild/improved we suggested 6month review. I was due to be seen beginning of april. I then recently was told my MS specialist had gone on a one year sabbatical and was being referred to Dr Omar Malik and should get an appointment within 1 month of when I would be seen but if I don’t to call the secretaries. Was fine with this as I know he’s a good neuro. I still hadn’t had an appointment through yet so rang the secretary to be told I don’t have an appointment and won’t have an appointment for Dr Malik as he’s not accepting any more patients. They’re trying to get another neuro but they don’t know when or who that will be.

Just frustrated - I really don’t think it’s good enough or good service provision - particularly as I went as a second opinion.

I had since Jan had fatigue and then 2weeks ago had neck spasm (again) and pain radiating through ear and neck. Was motion sick and felt generally like when I moved I was over moving/swaying(does that make sense). I saw the GP as at first I thought maybe it’s an ear infection but ears were good. My symptoms have improved but its just frustrating as it would have been good to see the neruo to get things documented and get opinion on whether it is looking still ?MS (as MRI had non-specific lesions), whether I need another MRI etc.

Anyone else under charring cross having issues with their appointments etc

Reemz

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Hi Reemz, I - and many others - had a potential battle on our hands recently when our MS Nurse retired and no initial steps were taken to replace her. From the start my nurse has always been a fantstic source of help and support and our first point of contact - not just for people with MS but also for MND patients. I didn’t hesitate in bashing out a comprehensive letter to the Chief Exec of my local NHS Health Trust outlining exactly what an MS Nurse Specialist does, how crucial the service is and a detailed explanation of how MS can affect us, our families and ultimately, our lives. I wasn’t the only one to do this and ms charities were also involved. Have you considered taking the situation you now find yourself in to a higher level? We shouldn’t have too, but sometimes we have to stand firm and shout a bit louder to actually be heard. Debbie xx

Well that sucks :frowning:

Dr M has increased his hours at Hillingdon so I guess he’s had to clamp down at Charing X :frowning:

I don’t see how they can’t get you in to see someone else though. Maybe see if Dr M’s secretary can persuade Dr Nicholas’ secretary to fit you in somewhere? Dr N gets rave reviews and I’ve always found Dr M’s secretary to be really helpful.

I hope you & they can work something out.

Karen x

Sorry to hear of all this Reemz :frowning: All I can do is send a hug and hope you get some help soon. Sam xx

Thanks guys. I’m grateful for your support and advice.

My partner feels like I’m pinning too much hope on the neurologists and should seek to see other people or go private as I’ll get an answer quicker (though he has no suggestions who). I’ve tried to explain to him that even if I went private it’s not really going to get me an answer quicker as I’ve had all the baseline tests done. Unfortunately neurology isn’t black and white and time is the telling factor as a lot of us know. He also thinks that maybe I’m to keen to think it’s MS - even though I asked to see a general neuro as my second opinion and it was he who said he thought it might be MS, and the MS specialist felt I’d had all the obvious stuff ruled out and it was sounding like MS - not me. He even thinks me coming on the MS forum is me thinking it’s MS when I’ve tried to tell him actually it’s somewhere more where you get support and can talk to like minded people in a similar situation - some do end up with an MS diagnosis but there are some that don’t and stick around.

I’m open to other diagnosis but in light of the neuro’s not having any other idea of other diagnosis, or me as other stuffs been ruled out, sticking with an MS specialist seems the most sensible option to me but I guess my partner sees this as me thinking this is MS when quiet frankly I don’t know.

Partner feels like it’s a waste of time going back to see the neuro as they’ll just say it may or may not be MS lets wait and see so whats the point in trying to get seen earlier when you’re not really going to move forward.

To me I really thought it was all going to get better - all go away when I was fine towards the end of last year. But I have had more symptoms - majority of my symptoms I’ve tried to battle through and cope with on my own (thats not to say that’s been easy - the fatigue at one point really did make me question whether I should be at work as I couldn’t figure out what I was seeing and having to really focus and it was scary).

I guess I feel its important to get symptoms documented by the neuro - though I didn’t go for an LP (it would only give me a probable MS diagnosis and no DMD’s), it might make them think it’s time for another MRI as it’s been a year since the last one and who knows maybe that might give more answers. The new symptoms might make the neuro think this isn’t MS it’s sounding more like something else?

My feeling is I know this isn’t going to go away by itself (I’ve realised that now), and even if I don’t get a diagnosis immediately, doing something to help myself move towards an answer is important. I don’t want to try and sturggle and cope with things getting worse and then run into serious problems and not be in the system. At least it also feels like I’m doing something.

I’m not trying to say my partner isn’t supportive - he’s great in many ways- and will be my rock when I’m not feeling well and things have flared up. But he has no idea what the symptoms feel like, how many people don’t get a diagnosis or go many years before diagnosis of their condition. But now after everything my partners said, I don’t know I guess I feel a little disheartened and now am questioning my self. Should I be doing something else/seeing someone else. Should I not bother chasing up to be seen by the neuro?

Sorry for blabbering on guys.

XReemz

I think, if I were you, I would want to see someone whose expertise and judgement I trusted. If they say to wait, then fine, but I would also hope that they would advise me what to wait for, what to do if and when that happened and what to do in the meantime. I also think that having new symptoms recently makes an appointment timely. That’s just me of course. However, how much you were mentally agreeing or disagreeing with me as you read may give you some insight into what might be right for you. If you could afford it, going private would obviously be quicker, but given Dr M’s problem with new NHS patients, I would go for Dr Nicholas if I were you. Then there is a chance of being transferred to his NHS list ongoing. Karen x

Hi Karen

thanks so much for your advice. After reading your post and having a think, I think I will ring Charring X on monday and speak to someone - either the secretary or someone higher up and try and see if I can see Dr M or Dr N if of course if he can’t - don’t mind waiting a bit to get the appointment. I think new symptoms does deserve another appointment and being left with a we don’t know who you’ll see or when is not really good enough.

I’d love to be able to go private and though we’re not strapped for cash we have a wedding to pay for and a house to buy and a pan to have kids in 2-3years which are expensive. I guess also working for the NHS I feel slightly annoyed if I can’t get the help I need through them when I’ve worked for them for so many years.

But first step I think is to ring on Monday and see where I go from there.

Thanks a lot Karen.X

Reemz

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