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so confused! MRI results - updated!

So I just phoned my neurologist to see if someone can explain my last mri results to me and I was able to soeak to my consultants secretary who said basically she is not qualified to give me results but they have sent a letter to my G.P, which is fair enough but it seems from the way she spoke it was as if I am being passed onto my gp now! anyway I phoned my gp and the receptionist said they have received the letter which says everything seems normal but she wants me to come in and see the gp! I am so confused now, is that it, should I just leave it now until maybe my symptoms get worse? I am going to see my gp Thursday anyway xx I am new to the forum and just looking for a bit of advice :slight_smile: I have been having several symptoms for a couple of years namely extreme fatigue and brain fog these were the only symptoms until about 10 months ago when I started to get a fuzzy and numb feeling starting from my left shoulder blade and stretching over to half of my right shoulder blade and also having problems with my words (finding the right words) and my brain fog and confusion etc became much worse around this time. I also started getting shock like feelings in my toes when I wake up in the morning (only in some of my toes), my GP referred me to the neurologist who said she things it is chronic fatigue syndrome but she will do a full blood work and mri of my brain and neck but she also discharged me as she thought they would all be clear, 4 days after the MRI she phoned me to come in and see her the next day. I went to see the neurologist who said she discharged me prematurely as I have a small amount of white matter lesions on my brain and she was going to refer me for cognitive function tests and to the ms nurse and also a new mri with contrast and of my full spine this time. I have had the cognitive function test which says I have some mild to moderate cognitive slowing especially with the word finding and also visual memory and also problems with executive function and in the summary she has said my results would seem like it could be m.s or chronic fatigue syndrome. Today I got my second MRI results over the phone from the receptionist at the gp who said I have no new lesions on the brain and no abnormalities on my spine, my problem is since the mri I have had what I would say is new symptoms and I dont know what to do, should I just leave it and what till I get an appointment with my ms nurse or let the neurologist know and also if my spine mri was clear does that mean it cant be M.S? sorry for the long ramble thank you

Hi there,

I’m replying as I see no-one else has yet, though I feel I’m not the best person to answer some of your questions. I have had a couple of mri’s, one with amd one without contrast. I have lesions on my brain but not on my spine. I was diagnosed with relapsing ms in March this year.

if I were you, I’d chase up the ms nurse appointment as if you do have it, the quicker you start treatment the better.

Good luck with everything whatever happens x

Hi Emmakay, thank you for responding :slight_smile: I just feel completely in limbo, I would just like to know whether it is or not as what ever it is I need some sort of treatment as I dont think I should be feeling like this at 33! also my brother has relapsing ms, he was diagnosed 2 years ago and my symptoms are very similar to his, although he doesnt have the cognitive problems! fingers crossed I get to see the ms nurse soon! also how many relapses did you have before you were diagnosed? I find it hard decided whether a symptom is worth letting the neuro know about or not xx

Hi my name is Kathy Rock I’ve had a mess since 2003. Your best option in my opinion is to find a neurologist that will give you an MRI with contrast to the brain thoracic and spine. Also Studies have found that MSS genetic and if anybody in your family has it you should get in as soon as possible because early detection is your best defense they have come out with some amazing medications that are keeping the attacks to a very minimum letting you leave a pretty normal life I know it’s scary and if you ever want to talk or ask questions you can reach me [Personal details edited by Moderator. Please use PM facility] wishing you the best Kathy

Hi Rookie, my brother has relapsing ms, he was diagnosed 2 years ago, and he was the one who first told me to talk to the doctors about ms as I have a lot of the symptoms he has. I had a second MRI on the 21st of july of my brain and full spine with contrast and i havent developed any new lesions on my brain since my mri in june, and apparently my spine has no abnormalities, but I havent recieved my letter yet, the gp receptionist told me on the phone, what I am confused about is if I dont have any abnormalities on my spine could it still be m.s? and also since having the second mri I have started having some new symptoms, basically the fuzzyness and numbness I had in my shoulders and top of my back spreads down my both arms, and I have also had numbness in my sides and from my knees down to my feet, in this period my word finding problem has got worse also. I also had an electric shock like feeling go up my leg 2 days ago which made my left leg give way and made me drop to the floor, but it was only one and after my legs have been feeling heavy. I have had other symptoms and in the heat my symptoms become worse but I dont know if its worth telling the neuro this? she referredd me to the ms nurse about 7 weeks ago, but I am still waiting. I am quite a positive person, and I am not worried if it is m.s, I know there are lots of treatments now, I would just like to know what it is so I can get on with things and deal with it. thank you xx

Actually Kathy, MS is not as straightforward as just a genetic disease. See https://www.mstrust.org.uk/a-z/risk-developing-ms

If you have family members with MS, you are slightly more likely to develop it, but even if your identical twin has it (with who you share your genetic code), you still only have a 1 in 5 chance of getting MS. And with a non twin sibling, the risk drops to 1 in 37.

There are lots of factors which combined may make you develop MS, but these will include the environment you grew up in (including the country of birth and country of upbringing), gender, age, viruses encountered, genetics, and a whole range of other influences.

You are right about the availability of disease modifying drugs which can massively improve your long term prognosis. Assuming you have relapsing remitting MS.

And btw it’s a bad idea to put your personal email on an open forum. There is a method of contacting individuals via private messaging. I suspect your email address will be deleted by the moderators.

Sue

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Amy,

i am also 33 and this hit me like a tonne of rocks this year. I work as a health professional and I’ve suspected ms for a while, once I got a neurology referral I was basically diagnosed within a month. I haven’t had what I would call a ‘relapse’ that other people talk of. I had a numbness in my leg 2 years ago, that I could feel but didn’t stop me doing things. I had a 24 hour poorly episode last year that I look back on and think probably was a relapse. I am lightheaded and off balance every day, I can’t run miles like I used to, I get very tired and have urgency to go to toilet. I feel that I have mild cognitive problems.

at the minute, my brain has multiple lesions but my spine is clear. I take tecfidera which is no problem at all.

id say tell the neurologist everything! It really needs noted down on your record so there is a comparison in time to come. It can also help to put the jigsaw together for your diagnoses x

Hi Emmakay, In my mind I have sort of accepted it probably is ms, but the neuro seems to be stuck on chronic fatigue syndrome, I have the feeling she wants to exhaust all options before deciding, but my I dont understand why I would have lesions on my brain if it is Chronic fatigue? I dont really know if I have had what you would consider relapses, although I have had weeks of extreme fatigue over the last 4-5 years that literally floor me, my brain fog is very bad at these times when I cant focus my mind on anything, i get confused, cant find words and find it hard to carry out conversations and just recently I am finding it hard to spell where as I used to be excellent at spelling. Then in the last year I got the fuzzy feeling and numbness on my shoulder blades all of a sudden which lasted a good 5-6 weeks and then after the fuzzyness faded i started to feel like i have a damp sponge inbetween my shoulder blades. I have also had an electric shock feeling in some of my toes as soon as I get up in the morning bit only for a minute or so and I have bouts where it is very severe and then I will have weeks at a time when it is less severe. Since my second MRI on the 21st of July the fuzzy feeling in my shoulders has come back and spread down my arms, and I have also been getting numbness and fuzzyness from my knees down to my feet, I also had an electric shock feeling go up my leg the other day which floored me, and the for a couple of days after that my legs felt heavy. Also I tried to go back to the gym and when I work out my feet and shoulders get the fuzzy feeling but very severe and also on the treadmill I can no longer run at all, as it feels like my legs and feet dont lift up and i can hear them literally slapping down so loud onto the treadmill where as I used to be a very good runner! how long did it take you to get an appointment with the ms nurse, as I am still waiting? also I have been told I have very brisk reflexes and a positive hoffmans reflex but the neurologist sort of brushed that off and didnt explain it to me, do you have any idea what that is? thanks xx

I have also had reacurring ear problems for the last year, 5 infections, tinnitus and fullness in both ears and some loss of hearing I also have hypermobility disorder which causes stiff painful joints and all of my joints click so sometimes cant differentiate if my pain is muscle or joint pain

Do you know why neurologist has referred you to ms nurse if they have diagnosed you with CFS?

the day after my diagnoses, I found the number online for the nurse and called prompting my appointment.

i convinced myself I had ms, I was prepared, but to actually be told- man I was wiped out. I went on my own and dealt with it ok face to face. But driving home is a blur.

i used to run too- but I don’t have the strength or balance now :-((

the exaggerated reflexes I know are linked with ms (e.g. Knees ankles arms)

i think the Hoffmans is the same, something to do with hands?

i am not sure why there would be lesions, but if neurologist thinks there can be another explanation, that’s a good thing.

i hope you get answers soon. I’ve read a lot of people that take a long time to be diagnosed. I am lucky it was quick once I got the referral.

Hi Emmakay, sorry for taking so long to respond, we went to centerparcs for a week and wifi and reception was awful :slight_smile: The neuro diagnosed me with cfs at my very first appointment before she had my MRI results, she then phoned me when she had the results to say she had prematurely discharged me and wanted me to come in and see her, which is when she told me I had a small amount of white matter lesions on my brain which looked like they could be demyelinating, she did say though she doesnt want me to think it is ms as it may not be but there are new treatments for ms that are excellent (which made me think she didnt want me to go away stressed until she could actually give me a diagnosis) she said she wanted me to see an M.S nurse just to see what they think. All of my appointments and results have generally been really quick, just the waiting for the ms nurse appointment seems to be taking ages! Can I ask do you suffer alot with trying to find words? I seem to be having a lot of problems with that at the moment, where as I used to never have any sort of problem like this, while we were away we played scrabble and I literally could only manage 1 or 2 words and had to give up, which I am finding so frustrating, I am also finding that I am forgetting how to spell! xx

Hi

I do hope you had a lovely break away- for myself- that sort of thing really helps me!

I find that recently I do forget words, and names of people that I probably shouldn’t even remember but I used to be very good at recollecting such things. My spelling is still quite good though.

My main issues are balance and co-ordination, closely followed by fatigue and urgency to go to the toilet.

I hope you get the nurse appt soon.

I chased mine, I was seen quickly but I had to wait a few weeks longer than I was advised for the medication to be sorted.