I feel a little lost. I’ve had an mri scan and have 2 lesions on my t2 and a lp which came back clear. I’m having terrible pain and spasms in my right hand. Both my head and muscles ache too, spoke to the neurologist who dismissed MS. My Mum has ms (sadly passed away 18mths ago) my uncle also has ms. My own GP isn’t happy as I’m constantly tired and having terrible nerve pain. Dr said he couldn’t rule out M.E.
I don’t know which way to turn. I feel I’m going mad. Is it me???
No you’re not going mad and you are not alone but one thing I do know is that worrying won’t change anything and with these things it’s a long haul until you may or may not end up with any diagnosis/answers.
I’m where you are too and living in limbo. My neuro has been dismissive, although he is continuing tests as I have neuro symptoms and my mobility is very poor
I do believe ME and MS share many common symptoms but post exertion fatigue is almost always present. This can present a day or more later. Does this sound like you?
I am sorry about your Mum. It sounds like it’s been a difficult time for you
Thank you Jane. I know what you mean about worrying. I’m of the opinion whatever it is I cannot change. I think I’m just frustrated as I’ve gone from an active 37 yr old. To now struggling with everyday task. Plus I’m currently off work which I hate.
I think it’s just when I know my body isn’t right yet I hVe no answers.
thank you again xx
Hi The unknown is the worst part of it . When I was finally diagnosed it was almost a relief as at least you can put a name to it and des with it as best you can . Don’t give up trying to get answers . I got dismissed 3 times by my GP before he referred me and then it took 5 months to get my lumbur puncture results . Hope you get some answers Ant
How did you cope waiting 5 months for results. E.g work, everyday task etc.
Hi In truth not very well . But I kept working and didn’t change my lifestyle . The busier you keep yourself the less time you have to think. I have to say 5 months is nit normal. They lost my results !! Usually a lot quicker than that ! Ant
yes. I do an activity something like hoovering and then that’s me done. I’m drained no energy at all. I have a stressful job and am re evaluating that too as at present I’m unable to work.
i just don’t know what to do. It’s the unknown that frightening. But can’t do anything about it.
thank you. Xx
Thank you Ant. Fingers crossed we get some answers soon.
I was diagnosed with a negative LP. However I did have 2 MRIs which showed progression of lesions.Good luck x
We sound very similar and like you, I cannot work especially as work involves 12hr clinical shifts night and day in a very stressful environment too. It’s so frustrating isn’t it.
I try to distract myself with doing little tasks, reading, the children, cats etc and sitting outside in the garden. Friends popping in for cuppas helps too to keep your mind off things. The key seems to be knowing your limits (I’ve not been great at this up to fairly recently!)
The last thing I want to do is to wish you a speedy diagnosis of MS or any other disease but I understand the stress of Limbo. The best I can do is tell you that there are drugs that help with Fatigue. I also take Vit. B Strong Compound which, I believe, helps to unlock stored energy.
Would your GP be willing to prescribe either?
The medical profession always shies away from diagnosing a neurological condition until there is solid evidence. My last neurologist preferred to sent me off to talk to a psychiatrist rather that entertain the idea that it was MS. I went along with the shrink until I ran out of patience. He promptly said “Your not depressed” and terminated the interview.
The spanner in the works is the test called the McDonald Criteria. It’s a box-ticking exercise that is the best guide (to date) of whether it’s MS or not. And it’s rather complicated but you can look it up if you’ve got a day to spare.
You may not know which way to turn and feel you’re going mad but there’ll always be this Forum. Use us as a sounding board for your worries, theories or just to blow off steam. We all have a really Bad Days so we just park our Bad Day on the Forum, walk away and get on with living. Watch your Bad day turn into a Good Day.
You’ll meet some really great people.
I don’t understand? You have symptoms and lesions. Maybe it doesnt fit the macdonald criteria yet but how can the neuro say it isn’t ms? Definitively?
My lesions are non specific according to the neuro. And because my eye slight is ok , my balance are ok he said it’s not ms.
I feel the neuro was entertaining me as he said ‘Are you not worried about these symptoms as your Mum had ms’
i don’t know what to do as I’m currently off work sick.
Dr did mention trying amertripaline for the nerve pain but was reluctant due to me being so exhausted.
I’ve just started on Amitriptyline Welshie, it is helping with the pain but it does make me drowsy (just started a thread about it) xx
I really understand how your feeling limbo is the worst place to be,
Last month i was diagnosed with PPMS after previous neuro found nothing significant on brain and spine mri. I then went to see an ms nneuro who found ms lesions on both brain and spinal cord.
It might be worth seeing another specialist even if its only to rule out conditions. For me it was finding a specialist who i had confidence in.
Hope ypu get answers soon
Similarly in limboland so I feel your frustration. I know I have ms. I have lists of symptoms prepared for doctor appt going back 16 years, there are classic symptoms on there that I didn’t know were ms at the time. And yes, my sister had ms, so I think I was dismissed by a lot of medical people as being anxious.
Anyway, re: Amitriptyline
I took it for years and am taking it again. It really does help muscular nerve pain, but you sort of don’t feel that it is, you just gradually notice that you aren’t desperately waiting for the next dose of your conventional painkiller and when you decide not to take it, you find that you are taking more painkillers again. It can make you sleepy, but I take mine at 7.30 p.m. so I have less of a hangover in the morning.
It isn’t helping the nerve pain from my cervical lesion though, so I am taking gabapentin now as well which seems to work I think. At least, I slept last night for five hours and got six hours two nights ago which is a lot better than for the past two months.
It does take your body a little time to get used to both these drugs, so you will be more sleepy at first, but if you are off work now, then that’s OK. On balance, it is worth trying because you might find that you sleep better so have more energy and you are happy to trade a bit drowsiness in the morning for that.
have you been diagnosed with ms now if so how many hoops did you have to jump through. I believe my symptoms are more ms than m.e.
my mum was on gabapentin I remember and they worked for her but as I’m not diagnosed with ms I don’t know if the dr would prescribe them.
Thank you xx
No, not diagnosed yet. Dr will prescribe gabapentin for anyone with any pain, not just ms. I was offered it years ago when I hurt my head and as a possible way of controlling migraines. If you have actual lesions then there shouldn’t be any problems at all if you want to try it. They prefer us to take this sort of drug long term rather than NSAIDS as fewer long term effects.
Can you tell me more about the vitamin b compound? Is it prescription only and do you need a blood test to check levels first? How easy are the tabs to swallow?
I had lots of bloods done just before this TM event because I was so tired. Showed up a severe Vit d deficiency but I don’t know if they tested for Vit bs Anyone know if that is a routine test? (I specifically asked for the Vit d)
Googling it I see that one of the signs of a Vit b deficiency is swelling of the mouth and lips. I’ve had swollen lips for a couple of years on and off- had assumed it was a washing up liquid allergy, but wondering now.
Hi Cen, I’m in a similar situation, I’ve got 1 brain lesion, waiting for results from lp, (done last week). I have had all this done 10 yrs ago, and was told all was normal, but now I’ve got a lesion. I’ve only had brain and cervical scan, even though I’ve got terrible lower back pain and leg numbness/pain. I’m wondering if I should ask to see a ms neuro specialist. I am under north staffs, and they have a ms centre there, but I’m not under their team. I have tried amytriptyline, but it has caused me more problems with bladder as I have bladder retention, due to not being able to empty, causing frequency and infections. This limbo is horrible, just wish I didn’t have to fight all of the time, I’m exhausted enough. I know I’ll be in same position as you if my lp is clear. Xxx