Hi I’m new to this site
i have an appointment to see DR Oliver Lily at spire tomorrow and I’m feeling very nervous.
im 32 years old and have been unwell on and off for 2 years now with no diagnosis. I had an MRI of my head done on the 20th December (due to having pressure in the left side of my head) which has shown several deep white matter changes (could be due to demyelination or vascular) abnormal and refer to a neurologist.
Since 26th December I have been really ill and was admitted to A&E a week last Thursday by my doctor with the following symptoms (I have had a few of these symptoms on and off for two years and was like this for 3 weeks in March through to the second week in April 2016).
Constipation
Pins and needles hands
Numbness in left side of face
Cold hands and feet
Numb feeling in legs
Feel like I’m walking on foam, and when stood feel like I’m swaying.
Burning sensations in legs and face
Muscle twitching in right arm
Pressures in left side of head
Severe eye pain, both eyes-stabbing
Blurred vision in left eye, eyes feel like they shake side to side.
Brain fog, jumbled up words, not making sense, trouble thinking clearly.
Muscle weakness in legs and arms and very pain full.
Urinating a lot more.
Been going to the doctors on and off for 2 years with joint and muscle pain/weakness.
I have also seen an eye doctor who said my nerves were inflamed in my eyes.
i have email over my dr letters and reports so dr lily can review my scan before my appointment tomorrow.
just feeling very nervous and not sure what to expect, has anyone else seen DR Lily?
i have been referred via the NHS but my appointment is not till march with a neurologist at Seacroft hospital.
the reason I have gone private is because after my A&E visit 2 weeks ago I had a follow up with a general Neurologists at LGI 4 days after and they tried to tell me I was having a migraine, but they can’t explain a few of my other symptoms, I’m not convinced.
My urine today dipped by the nurse at my GP surgery also showed protein, I’m going to the toilet a lot but don’t feel I have an infection.
thank you.
i have no idea if you have ms, i hope not.
it is good that you have had an mri and are going to see an nhs neurologist.
the technical term for going for a pee a lot is “overactive bladder”.
good luck and do NOT get stressed.
update us if you can
carole x
I hope not too,
thank you for your reply.
Hi, I havent seen Dr Lily, but I have heard excellent reports about him.
He is the top MS specialist at LGI, so you`ll be in good hands.
pollxx
I haven’t seen Dr Lily but I too have heard good things about him. (I saw Dr Ford in Leeds… she’s good as well.) Good luck, and don’t forget to take a list of questions to ask him - written down, as it’s easy to forget stuff in the stressful environment of a hosp. appt and then you come out of the appointment feeling that you hadn’t got your point across, or tackled the things that are really worrying you!
Hi all
i had a follow up with dr lily on Friday and he has diagnosed me with fibromyalgia, although I’m happy that I have a diagnosis finally after 3 years I feel apprehensive, he said fibro does not show on an MRI where as when I had my MRI scan done in December it showed several deep white matter changes, I had the worst flare up I have had in 3 year at Christmas and only just pulled out of it in the middle of march, still feeling the effects of it now. I know dr lily is very good but I can’t help think he may of missed something etc and I don’t want this to get worse to be told in a few years time yes sorry you have been missed diagnosed, you have MS, I would be heartbroken knowing I could have had treatment to help earlier.
please can anyone advise, should I get a second opinion? I think my general GP is sick of hearing from me and don’t know where to turn.
thank you
Hi there Just read your update, I’m going through diagnosis process as well at the moment, I was just curious how the consultant explained the leisons, what did he say was causing them. Thanks James
Hi james
sorry to hear this. I asked him about the several deep white matter changes and he said as I’m young, 32 years old he’s not concerned. I didn’t have the courage to challenge him anymore, I just think that he should of done further tests to rule out MS.
thanks nina
Hi, over the years of being a member of this forum, I have often read that fibromyalgia and MS can mimic each other.
As I said in an earlier reply, Dr Lily is a top man at Leeds.
I would doubt that he would miss MS as it is specialist subject.
If you are unhappy with his diagnosis, then I think a referral to somewhere higher would be in order. But this would involve your GP.
Sorry I cant suggest anything better.
pollsx