Hello. My name is Lois, I am female and 61 although 62 pretty soon.
At age of 25 I got a second bout of measles despite having had them as a child. This was in 1985. Up to that point I had always been relatively healthy apart from a battle with anorexia.
Anyway I got knocked off my feet by this virus and have never felt the same since. I want to cut a very long story short but will list all symptoms I can remember over the years if anyone would like to hear.
As usual with doctors most of them just look at each symptom as a single puzzle piece and never put them together to make a big picture. The majority of times I was sent away with vague answers or plain outright I don’t know answers.
One doctor in Jersey CI took me seriously (2013)when I expressed concerns of MS. Made a neurology appointment who made me an MRI appointment. Day of appointment came and I discovered I suffered with claustrophobia, had a panic attack and that was that.
I then had to move to U.K. and managed to get seen by another neurologist (2014) who refused my request for an MRI as she said it would be pointless if I suffer with claustrophobia. No offer of calming meds at this point and I didn’t know to ask. I was sent away with a diagnosis of vestibular migraine and somatoform disorder.
This last December my right leg buckled on me and I couldn’t walk so got sent into hospital for a few days. I was sent out with no diagnosis. I went to see my GP and expressed concerns of MS. Fortunately he made me a neurology appointment which came through fairly quickly but was in a location which was difficult for me to get to. Panic and anxiety caused me to cancel. I rebooked for a closer, more accessible hospital but am still waiting.
Symptoms which are regular now and particularly bad at night are tingling in feet, legs and hand. Mostly right sided. Also my right foot twists and cramps and at the same time my leg buckles and gives out. The cramp itself is not painful but the after affects are.
I regularly have vertigo, poor balance and feelings of my surroundings shaking. When I am walking and step onto a different surface I feel as if the ground is moving away and I am going to fall. I have a constant itchy spot on my inner right ankle. There’s more but these are my daily companions.
I was wondering if I should self refer for an open MRI as I have saved up enough for it.
Each day is a real struggle for me for so many reasons and I just need some answers.
Hi Apricot60,
welcome to the forum, Im pretty new here myself with a recent diagnosis. Im sure theres plenty of people on here can offer help and advice. take care
Hi Fatty Fish
Thanks for the welcome from another newcomer.
It was nice to hear from you.
I feel like a bit of a fraudster as I don’t have a diagnosis so I’m just looking for some advice which way to turn.
My gut tells me it could be MS as other things such as CFS, ME and Fibromyalgia answer some of the questions but don’t seem to be entirely accurate.
You have to be referred for MRI even if you pay for it.
it sounds like you have SPASMs, so you need to see the neurologist if you can afford an MRI then pay to see the neurologist privately, it isnt as much as you think, it is how i started and he has been with me now since 2007.
the issue you have is your AGE. If you read my journey it happened to me. BUT MS can be onset later in life with PPMS.
dont give up but i would go private. also ask for diazepam for your night spasms they will help, then if you go for an MRI you can ask for them when your have to go for one. The thing is with the tube deep breaths eyes closed go to a happy place. i never thought i would get through my first but hey i have had a lot more since and kind of dont bother me.
so if i was you, neuro private and go from there.
Thank you for taking an interest in my post.
When you mention my age, I don’t know if you realised but I think my symptoms started in my mid 20s so I have been battling more than half my life.
Regarding the MRI I’m afraid happy thoughts and deep breaths don’t do it for me. Even a minor MRI for my knee where I had Diazepam and was only partially in the machine was a very stressful experience for me. I had a 20 minute spine MRI recently with 5mg of diazepam and I just about managed it before the meds wore off, but it was definitely very uncomfortable mentally.
Not sure how I would go about seeing a neurologist privately, if you have advice I would appreciate it. Also I am on a very limited income so it might not be viable.
Regarding not needing referral for an MRI my research shows me that you can self refer so I’m pretty confident about that.
I thought it may be spasms that I’m having but I’m not knowledgeable enough to be sure. I have asked for Diazepam but our surgery will not prescribe, even though I’m pretty sure it’s the only thing that will really help sometimes.
Anyway, many thanks for your comment and I am very appreciative to have your input x
PS I will definitely be checking out your story too. Very much looking forward to reading it x
hi i can trace way back to first symptoms, the issues is when it shows itself you were older i mean show itself so others can understand it.
The only person who can diagnose you with MS is a neurologist so no point in going for an MRI because it has to be read by a radiologist who then has to send it to someone. GPs are not trained to read. You said you had money to do it, so what i am saying if you have the money for an MRI i would ask the GP to refer you to neurolgoist PRIVATELY in your area which they can do. I paid for MRI waste of money. best spent on the neurologist first. IMHO. To see a neurologist privately it isnt as much as you think and you get a full 30 minutes and treated with respect.
Ask the GP TO REFER you to neurologist then find out who it is and contact them most are attached to NHS trusts and will have phone numbers.
Hi Crazy Chick, I see that makes perfect sense about seeing a neurologist first. I have been researching some that are accessible for me so am in the process of finding out cost. Thank you for that advice.
I think that maybe my symptoms have been showing from an early age but I had no idea about MS back then otherwise I would have badgered the doctors more.
Anyway I feel like I’m heading in the right direction now and I’m glad to have your input.
I’ve looked for your story but can’t seem to track it down. Would you be able to point me in the right direction?
Hi, I was just reading about your fear having the MRI & am sure that 1 or 2mg of xanax put under you tongue about 30 minutes or an hour should help you a lot more than 5mg of diazapam of that I’m sure of. Also MRI’s used to be very expensive but are very affordable now & I would say to phone a few places where their done & I’m sure you’ll find some place that will be affordable… Best of Luck…
Hope you can open it.
Hello, thank you for your comment.
I have never been offered the Xanax. It’s certainly something I will enquire about.
Thank you so much for telling me about it.
Thank you for sending that link. Much appreciated. I will let you know how I get on with it.
Hi Crazy Chick,
I’ve read your story. Very comprehensive and interesting. Also very moving.
I resonated with a lot of things that you mentioned.
I am beginning to be convinced that investing in seeing a private neurologist would make sense.
I was very interested by a lot of what you said. One thing in particular which I have not received any answers for is Olfactory Hallucination. I was tested for epilepsy to see if that could be causing it but I didn’t test positive for epilepsy. I was interested to read that you also smell things. I am fortunate as I only smell pleasant things, but very specific.
I am researching neurologists.
Would you suggest making a list of symptoms from when I think my problems started in 1985 or just stick with more recent events?
I would appreciate any help you could offer.
I hope you are coping in this heat.
Be as brief and concise in your symptom list as possible. Easier said than done, I know. Whatever doctor you see needs to know the consistency of what you’ve been dealing with.
CC gives excellent advice. I’m not in the UK, so I can’t help with the medical aspect of things, but don’t give up! I had obvious symptoms from 1980 and couldn’t get a diagnosis until 3 years ago.
Hi glad my journey blog helped. I agree with noras mum.
when i saw my neurologist i had made an image a body of ME. on my body i put where the issues were. So he could see literally my left side was comprimised and where.
He said it was refreshing not to be given tons of A4 paper full of symptoms to wade through.
Mine was left FOOT dead.
Left back in shower dead couldnt feel water on it
Left EYE issues
Left leg (thigh and calf) bad spams.
a few things like crawly sensations etc.
Oh and bladder spasms. UTI constantly
That was it basically so he concentrated on checking my left foot first and it was not good, i had stocking paralysis, so from knee down basically he stuck pin in and i couldnt feel it, right leg i kicked him lol.
so he knew what he was looking for.
Yes it was odd the issue of smell but eventually i was diagnosed with Transient Eplieptic Amnesia NOT to do with MS per se. with drugs it seemed to have touch wood disappeared lol but i do think it was odd but not connected.
the heat is killing me i hate it. my body goes on fire, anyway just go for good all rounder neurologist not one just specific for MS as it might not be that. xxxx
Thank you for your advice.
So you’ve had symptoms even longer than I have!
Of course I had very little knowledge of MS in the past otherwise I may have pushed earlier for a diagnosis.
Yes I will be concise. I will collate all of my symptoms over the years and look for a reoccurring pattern so that I don’t overwhelm with too much information.
Thank you
Thank you again for your advice.
It seems on the whole that my symptoms are generally right sided.
I seem to get numbness but not so numb that I can’t feel anything if that makes sense. Like I’ve been given local anaesthetic but it hasn’t fully taken.
Also feelings of UTIs with bladder pain but no UTI present.
I noticed in your blog that you had optic neuritis but you mentioned the scars from that can heal and not be visible.
I had an episode with my right eye which came on very suddenly and was excruciatingly painful. It lasted about 2 days and then gradually eased over the next 6 weeks. I didn’t go to the doctors as anxiety was stopping me from doing so many things at that time. About a year later I had an opticians appointment and asked them to check for signs of optic neuritis. They said there weren’t any. Does that indicate I never had it or if I did have it it may have healed?
Sorry, I’m not expecting you to be my doctor here and have all the answers but it seems like you are well clued up!
Interesting you say to find a general neurologist, I was thinking MS specialist. Maybe I should rethink then. My fear is I end up with someone who is more interested in the fact that my leg goes dead and explores that route rather than seeing what’s going on in the brain!
Hi OK i saw TWO MS SPECIALISTS on top of my man. He suggested it as at the time wasnt MS savvy like a specialist should be.
Well that was a waste of money. First one never even saw my notes, after a quick check over he diagnosed me with M.E. lol.
Second one diagnosed me with Functional neurological disorder. He again hadnt even seen my notes. 2 weeks after seeing him i got a letter of apology from him saying that he hadnt seen my notes, but since seeing me had and there was too much evidence on there to diagnose me with FND, and wished me well on my journey to finding out what is wrong.
I say general neuro, as my first one was, he is the one who stuck with me and finally got me diagnosed. I have primary progressive MS, it is SPINAL MS, with Optical Nueritis. It doesnt necessarily show up in the brain. Most of my main lesions were on my spine.
Yes what you wrote makes sense. the think is with MS numbness you feel numb but know you have a limb. MS is usually only ever one sided. Years ago when i applied for DLA, my doctor who came to the house, did a good check up and did check my eyes, and she said you have pale opetic disc or simlar which indicated i had optic neuritis at some point.
even after having definate ON recently i was told my optic nerve was ok. so who am i to argue. BUT the 2 VEP tests i had showed i had bilateral ON at one point and the second one showed i had worsening ON symptom down to the lesions between brain and optic nerve. Again who am i to argue. I just sit there and nod my head.
what you wrote is what i would tell the neurologist. right side weakness, numb feeling, bladder spasms, eye issues with pain lasting 6 weeks.
let them decide what tests to do. Like i said everyone is different as you dont seem to have clear relapses perhaps like me they could look at PPMS but again i am not a doctor, i know you want answers and its easy for us to focus on one thing, but a general neurolgoist too wont be OBSESSED with MS. but will hopefully look outside the box.
Thank you so much for all your input.
It is very helpful for me that you are able to answer my questions and point me in the right direction.
My symptoms are certainly nowhere as severe as yours but severe enough to cause concern.
Ok, a general neurologist it will be then.
I really feel that at the age of 62 it’s time for some movement on this problem.
I will post when I have any updates
An update.
So it was December 2021 that my doctor arranged a neurology appointment for me, and I am still waiting. I received a call recently from the hospital to say they have huge waiting lists but a private company are now taking on some of their patients as NHS patients and would I like them to consider me. That was a month ago. I was told the company would call me to screen to see if I was a suitable candidate for them but nothing so far.
Also I have just recently received a diagnosis of autism so I think that explains why I have panic attacks in mri’s.
I haven’t progressed with getting a private neurologist yet as a move and one or two other things have amped my anxiety levels up and I just can’t cope with doing that at the moment.
I am having difficulty finding a doctor that I gel with in our practice so haven’t had the confidence to ask about being referred privately just yet