For those of you who have been following my journey to diagnosis I am now worrying that my symptoms may not be caused by ms… My reasons are that most of my symptoms are sensory at the moment and heavy legs
I was wondering if anyone has been diagnosed with ppms with mostly sensory symptoms? PPMS seemed more likely due to my age and no relases and that brought another worry to me…is is possible with ppms to have times in the day when you feel ok, maybe in the early part of the disease.
It really doesn’t matter whether others have been diagnosed PPMS just on sensory issues. As MS is often unique to different individuals in how it affects them and what symptoms they experience, the only thing that matters is how the condition affects YOU !! (Just because Joe Bloggs is diagnosed with PPMS and gets pain in his left elbow, it doesn’t necessarily mean you’ll experience the same, even with a similar diagnosis !!)
Just wait and see what your neuro says, and take it from there.
And why in heavens does ‘feeling ok’ cause you worry ? I’m sure loads of people would love brief spells of feeling ok, but that certainly wouldn’t mean they didn’t have a ^&)*%$£ condition that affected them most of the time !!
(I’m now classed as SPMS, and I have moments when everything seems to be working correctly …but it only lasts for a few seconds before MS says “…that’s quite enough of THAT nonsense”. Whether or not anyone else gets the same, it really doesn’t matter because it’s not MY particular instance of MS !)
I know your right iv just worked myself up as im getting to the finishing post. Its all the months and months of hospital appointments been told this and that and finally i have a neuro who is getting to the bottom of my symptoms. It seems too good to be true that someone can possibly have the answers.
When i say i have periods of feeling ok, during those times i still expereince sensory disturbances, brain fog and mental fatigue. My numbness seems to appear at rest when im trying to sleep as does pins and needles. All these things for me have become a way of life and i feel iv got off lightly as it could bbe much worse im sure.
Sorry for the rant, i know im letting panic get the better of me as im waiting to see the neuro again in a couple of weeks.
Sometimes, often in the mornings, I wake and feel I can take on the world again I start to do stuff then very quickly BOOM and find my symptoms have returned with a vengeance! And, they are very similar to yours. The numbness, the tingling, the fatigue, the lead wellies, the sensory oversensitivity, etc, etc. Fortunately not all at the same time but mostly when I’m still.
Sometimes (again!) its the stress of not knowing or even the fear of knowing that causes panic and distress. We really do feel for you. Even neuros don’t have all the answers although they are the ones we look to for certainty regarding our particular range of symptoms and a firm diagnosis. They make their diagnosis on the balance of all the symptoms. This means it takes time.
Dom is right, take it one step at a time. I do know that some folk have gone years before diagnosis. Particular to PPMS is the age thing with its late onset. It is possible to be diagnosed with just sensory symptoms. But from what you describe you have more than just this area. Everyone with MS is unique. Take a deep breath Christine and all will seem clearer once you have a diagnosis.
Use this forum to talk about your problems im sure it will help you thats what we are here for.Take one day at a time and make the best of the good days.jox
Yesterday felt like meltdown, i was upset about my daughter whos having her first baby and her partner is living the single life…it all became too much and i needed to be strong.
Todays another day and emotionally i feel a little stronger.
I know i have ongoing symptoms but its so easy to let them become the norm for example im so used to the feeling of running water on my legs or arms that i no longer see it as a symptom its just something that happens. Or the feeling of bedclothes on my legs causing numbness.
I think i have associated ms with not being able to walk at all as my cousin fell one day and the next he was unable to walk and still can not…he was diagnosed with ppms in his 50s.
Now i realise that is not the norm and symptoms can be more subtle.
Without this forum im not sure where i would be. When i post a question or concern i can tell from the replies that others have felt and experienced what im going through.
Hang in there, your neuro is listening and trying to fit the pieces into the puzzle, it will fit into place eventually, and then you can move forward. The not knowing is always the worse, but sounds like you are almost there.
My symptoms can come and go, just cos the morning is quite good, doesn’t always mean the afternoon will be, or vice versa, but in bed at night they always seem worse. Not sure if this happens cos of trying to relax, or the fact like I have nothing to distract me, looks I do during the day.
Not knowing can be a real nagging source of worry. It can leave us uncertain about our futures. All I can say is that after 22 years of officially having PPMS and about 10 years leading up to that, I am still managing. It’s funny how we can adapt. Adaptation could easily be your most pro-active course of action. Busying yourself with ways of coping; from simple kitchen adaptations to bigger things like shower chairs or walking aids, can be therapeutic and calming in its own right. It’s something positive in a world of negative thoughts and impressions.
Hi Christine, you wrote: Or the feeling of bedclothes on my legs causing numbness.
When i started my journey i found the bedclothes made my legs hot and would make the spasms worse. My GP at the time said is there anything i can get you which would make you more comfortable, and i said yes, a blanket cage. I had one delivered about 2 hours later.
I have used it every night since for years. Even when we went on holiday it came. Since i started to use it, my spasms at night were better. It just stops me getting overheated.
Thanks Pam, I think your right about symptoms worse on a night when your minds of the numbness of wha other things are happening. I find it easier during the day when iv other things to think about.
And yes my neuro is trying to work out whats happening and i know i need to be patient, im not finding that part too easy.
Thanks Steve, Im finding some things easier to deal with than others, im still not getting to the loo on time. Its like one minute i dont feel i need to go and then the net i do with urgency. I find the physical things easier to deal with apart from the loo thing, its the emotional side which i find harder. We look the same yet so much has changed and perhaps is going to change.
Chin up. Like yourself I have been diagnosed with MS but still do not have any specific advice from my neuro who,over this last 6 months has been trying, by use of numerous MRIs, to find out what causes my back pain and stiffness which at times is excruciating. I understand GPs are over loaded with work but wish they could be more helpful rather than just affirming you have MS.
At outset I was proscribed Gabapentin, then Dulloxetine and numerous scripts for co-codamol. All these medications were of little help but recently I was proscribed Baclofen which I have found to be best of all. Medics seem to be quite often just using trail and error to see what works best for each patient.
After Easter vacations I am going to visit my local NHS MS Nurse as I have been told they can be much more helpful than GPs. I suggest you try and get a similar appointment as they could help with pain management and the blanket cage you knew nothing about.
Wish I could end on a more positive note but MS patients quite often have to really push to get answers and help with their conditions.
Christine I’m in agreement with what the others have said… we are all different and have very different symptoms but the fact that they’re sensory usually indicates nerve involvement which ties in with ms. I too suffer with various nerve symptoms and they can disappear and reappear randomly or even alter, for example my skin may feel okay one day, feel like I’ve got ants crawling over me another or feel like I’ve been scalded so badly I can’t wear normal clothes another.
Some days I’ll feel like I can tackle anything (and usually crash down to earth with a massive thud if I do much) and other days I feel like death warmed over all day. Don’t think that because you’re labelled or suspect to be labelled with progressive ms that every day you’ll feel the same or worse, I don’t know why or how, but it doesn’t work like that. Worrying and stress do exacerbate symptoms though so try not to let it all get to you. Enjoy the good days or hours when they appear, it’s not all bad.
Its all starting to make sense to me now. When i had the crawling feeling that went on for a while, it stopped for a short period but i had other things going on like running water feelings and numbness. At first i thought that with ppms you had to have the symptoms every minute of every day. Now i realise that even with ppms they can go and go or wax and wane was someones way of describing it.
I guess my fear was initially could i have ms and now its turned into what if i dont have ms…what on earth do i have. I also know theres no quick route to getting a diagnosis. But everyday that goes by i am getting closer to finding out, i have neuro appt next week which cant come quick enough.
also if you get a diagnosis soon ,you will think you are prepared,i did, i went for years thinking i had MS and when i was waiting for my diagnosis i told myself i wouldnt be shocked,
but i was so wrong it hit me like a ton of bricks and took me a long time to get my head round it.Good luck for your next visit.
I think i will be shocked because i go from thinking its ms to it cant possibly be, why at 57 would i get ms. But i think if someone tells you its ms not it might be then like you say no matter how prepared you think you may be, it will change how you feel, and then maybe comes the relief that explains all the odd symptoms…