PPMS symptoms??

Primary progressive MS
1

Hi Guys,

Sorry for posting yet another thread like this (as I see so many have posted the same thing before).

So I am 25 male and have been seeing a neuro for the past year, regarding symptoms I’ve had for the past 18 months, they came on suddenly beginning with: bowel problems, blurry vision (not double more so floaters) and a tight hamstring.

5 months later, it was like I was plugged into a powerpoint, I even turned around to see that no-one had given me an electric shock, it gave me tight hands, forearms and legs that I still have albeit slightly less intense as it was back then.

I’ve had 3 MRI’s which have only found one non specific white matter lesion in the frontal lobe and potentially one in the cervical cord, although the latter MRI’s couldnt find it, a negative LP, negative SSEP, negative VEP X2. Numerous blood tests and slowly have felt that my movement isn’t the same, although I haven’t done any exercise since this all began an have gained alot of weight!!!

I am just at a point now where I just don’t know what to do, my neuro discharged me and the GP wants to feed me anti-depressants or recommend physio! on what I don’t know because everywhere is bad, I have pins and needles everyday, my legs feel like they’re fading and in generali I just feel like I am giving up.

I honestly don’t know what to do anymore. I am desperate for some answers… I’ve been told I don’t have MS but if not what else could it be?

I haven’t had one single day of reprieve and it’s been well over a year, I can’t say things have gotten any worse but, they don’t seem to have gotten better either.

My question is, could it still be possibly MS?

2

Hi MCG

Welcome to the board, haven’t seen your name crop up before but if you’ve been on before please ignore my ignorance and blame it on my poor memory. I’ll be very honest and say that I don’t know if you have or haven’t got ms, but your symptoms definitely look familiar and you don’t need loads of lesions to have it. What I do want to say is that I’m very surprised that your Neuro discharged you without giving you a definite diagnosis. In my view it’s his job to continue testing until he has one.

If I were you I’d visit the gp and sit until I got a diagnosis or reveal to someone who will make the effort to find one. Alternatively if you can afford to, see someone privately. You are obviously not well and what they’re doing, just passing you off back to the gp is unacceptable. I honestly don’t know what else to suggest. MS is not the best diagnosis in the world to have but being in limbo was a lot worse. I hope someone else can give you more suggestions.

Take care and please let us know how you get on.

Cath xx

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Hi MCG and welcome to the gang! Sorry to hear you’ve been having such a bad time. Terrible to have symptoms without any diagnosis (dx). I agree with Cath. The neuro really shouldn’t have discharged you as obviously something is going on. MS can be very difficult to dx… and they rely on MRI result, symptoms & LP if they can’t dx with the first two. I wonder if it would be worthwhile seeing a consultant in general medicine? Your GP can refer you. It might then lead back to seeing a neuro. Sometimes, after a period of time, lesions will show up on MRI and LP could become positive. Has your GP considered ME? I know quite a bit about ME as I was first dx with it… and many people with ME have symptoms that are just like MS but without brain lesions or positive LP. A lot of people don’t take ME seriously, but I would suggest that you find out more about it on the internet (it is sometimes called CFS… Chronic Fatigue Syndrome although most people prefer to call it ME). It might be a route for you to go down as with an ME dx you will also be sent for MRI… that’s how I ended up getting MS dx. So don’t immediately dismiss it. Believe me, there are lots of very poorly folk out there with ME. Read about it and if you think it’s a possibility ask your GP if he can refer you to an ME specialist. I’m not saying that’s what you have but it’s possible AND more importantly it would lead you to another consultant which might lead to some answers. In meantime, you are very welcome to use this board. I really wish you the best of luck. It’s a terrible position to be in. Pat xx

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Hi MCG! Just to add my voice to Pat & Cath’s- your neuro seems have treated you quite unfairly. Your point of redress is always to go to your GP and get him or her to step up to the plate. I hope you are able to see the same GP every time you visit the dotor’s. You need to be able to build a good personal relationship with your GP, and be able to trust him/her. If you can’t, ask to see a different GP. All the best Kev

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Hi MCG. Very difficult as there are 2 sides to every story, and we only have yours, so won’t comment on neurologists finding and reason for discharge, though I would be pleased to be told I didn’t have MS, even if it ment no blue badge, lol. I think I would have gone to my GP and said I’m self employed not trying to get handouts, so don’t tell me what it’s not, tell me what it is, if he says stop eating alcohol smoking etc etc, then that’s your call, sorry not being funny just realistic. (Good luck) Not MS Cool.

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Hi mcg, Neurologists are extremly wary of diagnosing MS. All the time I was experiencing symptoms I always told peoploe that I was being investigated for the symptoms of MS. My neuro interpreted this as self diagnosis and, with prejudice, added that he thought it was a functional disease and sent me off to see a psychiatrist! Finally, after a lumber puncture, which showed the presence of T-cells, he grudgingly admitted that I was right, confirmed MS and promptly left the room. I fact we saw him leave the building before we did. My wife was devastated as she had always held onto the belief that these were tempory and curable sumptoms. Bedside manner 0/10. We are very lucky to have a specialist MS Nurse who supports my wife as much as me. As you can read I am not a fan of neurologists; they don’t know enough about this issue. Yours, Albrecht

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Hi all, just chipping in about experience with neurologist. When I saw mine for the first time he only wanted to focus on two or three symptoms and kept shutting me down when I tried to talk about others! I had taken a bullet point list and asked if he wanted it but he said no! He decided I had RLS and sent me away. Since then I’ve had MRI brain and spine (lesions on the brain one) and a DAT scan (no result yet). Next appointment with neuro is not till December so I emailed him (via his secretary) with a full update on symptoms. They are hugely busy people so I guess we have to get our points across in whatever way we can. I get really nervous in front of docs and am not very assertive face to face. At least he can read my email before I get there next time!

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Sort of know where your coming from, but think its luck of the draw, like lots of things in life, my nurologist is a really nice caring lady, she gave me her personal Email, and if I do use it, she has always sent me a message back, I had a bad turn, sent email was in her office in under a week and on steroids, but the nurse isn’t so easy to talk to, so there you go.

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mcg - I’m so sorry you have been dismissed like this when there is so obviously something not quite right.

I am in a very similar position and all I can say is keep pestering your GP until you get some satisfactory answers, or until he/she refers you somewhere that could lead to answers.

My GP is now at the stage where he has told me that they have no idea what’s wrong with me (at least he’s actually admitted it, whereas my Neuro tried to blame it all on a vestibular problem that was not supported by any tests), that they probably will never know what’s wrong with me, and that I should just accept this and get on with my life and deal with my disabling symptoms as best I can. I have told him that, at 49, I can’t do this, so we are at a kind of deadlock at the moment. I am due to see him again in a couple of weeks and am going to try again. He needs to know I am not going to go away and am never giving up until I have some answers. As far as I’m concerned, as long as I don’t have a diagnosis then there is still a chance they will find out what’s wrong and be able to cure, or at least treat, it.

Don’t give up. As I said to my GP - I know my body and I know there’s something going on.

Good luck, and know that you will always find support and understanding on this wonderful forum xxx

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Hi Purpledot, I think the points you make are very true… and esp ‘I know my body and I know there’s something going on’. Even after diagnosis they will still not believe us when we KNOW that something is due to our MS. I’ve had this disagreement with my neuro over a swallowing problem (a speech therapist has now said it IS MS causing it) and episodes of severe pain in wrist or hip. I know it’s my MS causing it. I’ve lived with this damn thing long enough. I know when pain comes very suddenly, very severe, and then goes very suddenly that it’s an MS thing. But they, for some strange reason, cannot seem to get it into their heads that we do KNOW OUR OWN BODIES!!! Best for luck with your search for a diagnosis. Never give up! Pat xx

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Hi Snow Leopard, I have the same problem with swallowing. Every so often I will sit down with a delicious meal in front of me only to find I can’t swallow any of it! This condition has such a wide-ranging set of symptoms that you end up feeling like a hypochondriac!