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Feeling really down & confused ...........

Hi Everyone

Apologies for going Anon … I used to come on here ‘many moons’ ago but as I’m not diagnosed I left.

I’ve had problems for 6 years now - getting progressively worse over that time. I saw a Neuro for a while, but he said he couldn’t see me any more as he’d been told by hospital managers to reduce his follow-up appointments. He asked a colleague of his (a Rheumatologist) for a 2nd opinion and this guy diagnosed me with ME.

Since then my problems have got worse. I now have numbness in my lower left leg, ankle & foot. Slight dropped foot. Muscle stiffness in that same leg - a neuro physio friend couldn’t even bend my ankle upwards, the muscle was like wood. I have needed to increase my pregabalin to 200mg due to the pain in both legs (tight, gripping pain). My fatigue is awful. I had 3 bouts of dizziness/nause last year & although that has subsided I often feel ‘lightheaded’.

I now need to walk with a stick outside due to my balance + difficulty walking with the leg stiffness. My walking is limited to just going round the block. I only go shopping once every 4 or 5 weeks due to the effort of doing it, and once I’ve got there on the bus can only manage 2 shops maximum.

When I was with my Neuro about 2 years ago, he had another doctor with him who suggested to my Neuro that my symptoms were looking like PPMS.

Because I’m not seeing any medical people now, I went to my GP & at first he suggested that it might help me if I found a job!! . Thankfully my neuro-physio friend was so appalled at that she came round and did a complete history and physical examination and wrote a professional report for my GP. Anyway, he’s now changed his mind and wants me to have a 2nd opinion at the National Hospital for Neurology in Queens Square, London. It took him 5 weeks to even write the referral letter & now I’m still waiting for an appointment date.

Sorry this is so long…I’m just feeling very low tonight. I’m finding it hard with no answers and no-one really interested, despite my life having changed beyond recognition. I’m thankful for this new referral but the waiting…and waiting…

I’m sorry if I’ve come on the wrong board, but thank you so much for even reading this - I’m grateful xx

Hello there, I’m sorry that you have been left without anyone taking your problems too seriously. You don’t say whether or not the original neuro did any tests like an MRI, an LP or evoked potentials. If you had any of these, were they negative? This may have been why you were discharged but that does not mean that there is not something wrong, there obviously is! I am so sorry that you have had to struggle on your own for so long - your GP sounds pretty useless too! Thank goodness that you have a friend who is a neurophysio - it sounds like she may have saved your bacon! Luckily you now may get the help you sorely need. The waiting is an absolute pain but at least you are in the system now. Keep your chin up if you can and just take it day-by-day, it sounds like you are going to one of the best places to receive help. Keep us posted as to how everything goes. Btw, welcome to the board! Teresa xx

Hi Anon

Theresa is absolutely right about one of the best places being Queen Sq. I was bounced around 3 NHS hospitals and 1 Private hospital over 5 years before insisting my GP refer me to Queen Sq. They diagnosed me in 4 months. So keep your chin up knowing that you are going to be seen by a professional at what Ive heard say is the best hospital for this crappy disease in Europe, if not the world. Best wishes, Steve xx

Hi Anon…

Thank goodness you have finally been referred to somewhere good & where you’ll find out what’s going on!

Very, very hard living with these symptoms… but I think even harder when you don’t have a name for it! At least when you get diagnosed you know what you’re dealing with.

Like Stevie I have heard that Queen Sq is the BEST place to go and hopefully you won’t have to wait too long for some definite answers.

You are very welcome to use this board… so come back and tell us how it’s going. Also remember you can call the Free MS helpline (number at bottom of this page)… it sometimes really helps to talk to someone and you don’t need to have a diagnosis to call them.

One day at a time eh?

Pat x

Thanks so much Teresa, Steve & Pat for taking the time to reply …it helps so much that you know what all this feels like. I think the fact that the pain and fatigue has got worse over the last month or so and my walking deteriorating, that the limitations are making it all feel more real. Without a diagnosis I’ve been in denial about things, but now I’m having to realise it seems here to stay .

Teresa, yes I had an LP back in 2009 + MRI of brain & spine - all of which were normal at that time. I had a VEP which was ‘borderline’ & an SSEP which showed ‘marked difference in amplitude between the left & right leg’. But that’s all - so yes, I can see why the Neuro discharged me at that time, especially as I was walking without any aid then.

I’m so thankful for this referral to Queens Sq. I’m wondering how I will get there 'though as I live in the very south-east of London & I think the travelling will involve a train & London underground . Not sure how I’ll manage that, but think I would be happy to go by camel if it means getting some answers!!

Thanks so much for your encouragement - I’ll keep you informed xx

Hi Anon. im East London/Essex borders so Central line to Holborn then short walk was fine when I could walk!! Now that I cant walk wife drives me which is ok in motability car as no congestion charge and blue badge helps with parking. There is parking in Queen Sq. tho sometimes we have to drive around for 10 minutes before we find a space. If you haven’t got car/badge, Russell Sq station is also close by but Im not sure what line thats on. Good luck, Steve

Thanks for that info Steve. I don’t have a car, so I’ll look on the Transport for London website to see the best way (with the least walking!) to get to Holborn or Russell Sq.

Can I just ask - when you were referred to Queens Square did you have to wait long for an appointment?

Thanks for your help.

Hi Anon, sorry to hijack question to Stevie… but you could get a taxi from Holborn to Queens Square. Very close.

Pat x

Thanks Pat. I’ve looked at the TfL website and found that I can get to Charing Cross by train then to Holborn via the Tube. I’ll then take your advice and get a taxi to Queens Square. Seems straightforward on paper - I may ask someone to come with me!

I appreciate everyone’s advice and help. I’ll let you know the outcome when I get the appointment x

Just a warning. Beware TFL route planners. I have dental treatment every few weeks at Kings College Hospital. TFL route planner took me on buses, overground and trains taking hours. All I needed was train to Clapham Junction change overground to Denmark St. total 40 mins. Only found this out on appointment number 4. They don’t always give you the easy option. Have a look at the hospital website as they often have the best routes.

Good luck

Hi Anon, it may be worth giving them a call and seeing if you can get patient transport. Adds to the time as they do pickups and dropoffs along the route but there’s no way I would have got there on my own. If your GP can fax them to say you are unable to get there on your own you should be ok.

Mags

Hi Anon

I think I waited about 12 weeks for initial appointment.

It maybe an idea to contact the hospital as there are a lot of people there that get picked up from home and dropped back afterwards. May help you? Best wishes.

Steve

Thanks Dinks, Mags & Steve for all your advice which I will definitely take on board. I’ve been in contact with my neurophysio friend & she says that if she can get time off work on the day the appointment is for, then she will come with me - how great is that!

She knows the hospital, therefore may know the best route from here. Anyway, I’ll bear all your suggestions in mind - I really appreciate your help xx

It will be great if your neurophysio friend can go with you! Teresa xx