I think I’ve been very lucky Pat in that my neuro has always treated me quite well and I’ve heard others say the same. He’s also super organised and dictates any letters/referrals into his recorder while you’re there. I even emailed him once to tell him how I got on with steroids (I didn’t!) and he emailed me back and answered all my questions.
Nothing so far but no police banging on the door either. Wonder if I can chance another phone call before she gets a restraining order?
I know what you mean about the denial thing, except it’s more a guilt thing with me. Every so often I’ll get a few days where I have a bit more energy and my walking improves (not sure if that’s normal?). The first time it happened, by day five I was thinking about the possibility of going back to work and that maybe I was ‘mild’ and had gone into remission or they’d made a mistake. Then I woke up and it was SSDD. Now when it happens (once or twice a year) I feel really guilty and that maybe I’m making myself worse to justify my benefits. Then I get angry that all this negative spin by the government has taken the joy I should be feeling away from me as I don’t want people to think I’m swinging the lead…
Thanks Teresa, I shall post as soon as I’m put out of my misery!
Hi Moyna. I’m not sure what he’ll say if it’s negative tbh. I think the diagnosis will still stand because it was based on two head MRIs performed about 18 months apart, so I still fulfill the criteria. My main symptoms are fatigue, muscle and neck pain (although I’m expecting the cervical MRI to show some spondylosis), muscle weakness (mostly left side), balance and continence issues, brain fog, eye pain &light sensitivity & lots of little niggles (buzzing feel & hands, a few numb patches, occasional stabbing pain etc.).
I also seem to have a problem with exercise in that it can make me feel really ill (like having the flu & my glands become painful) which is a b****r as I’ve just started physio. Felt like I’d been run over by a truck today and could feel the glands in my neck swelling after about five minutes. Odd eh?
Hi Mags, yes it is normal for PPMSers to have symptoms go up and down… and I too get a day or few days sometimes when I feel quite ‘normal’… in fact if I could walk further I would feel totally normal. Always feel very guilty when it happens and like you I feel guilty about getting benefits. This is what this damned government has done to us!
Yeah it really makes me angry too. We should be celebrating when we feel well!
Then bang! The next day all the usual suspects are back and I’m reminded that I do actually have MS!
Glad the secretary hasn’t called the cops yet!
Hi Moyna, it is difficult when the LP comes up negative. Sometime they will give a ‘probable MS’ or ‘possible MS’ dx. He will probably want to wait a year and do another LP. Are there any other lesions showing? Any on brain?
Hi Mags, Just wanted to reiterate what has been said - I sometimes start the day quite well and think I’m OK but I end up doing too much and my legs are the first thing that tells me to slow down and stop. I have not applied for any benefits but maybe I should? I’m put off by everyone’s ATOS horror stories! You can still get a dx of MS with a negative LP because for some reason about ten percent of MSers are negative. Take care all, Teresa xx
Hi Pat to answer your questions. I have had two MRIs with no change in between. One cervical lesion and clear Brain scan, with and without contrast and 2 clear lumbar punctures. First neuro (who is an ms specialist) thinks radiation damage from treatment I had in 1990. The second neuro (general neuro) says definately not radiation myleopathy and it is an unexplained myelopathy (cant diagnose MS - not enough evidence). Essentially I had an attack 4 years ago and had numbness l’hermittes and weakness. GP thought virus! I did recover pretty well but I think the episode triggered spasticity in right leg only which started to appear 9 months after the attack. This spasticity and has gradually got worse. I saw first neuro essentially 2 years after the attack and had MRI and lumbar puncture. Radiation myleopathy was diagnosed. A year after this the physio sent me to another neuro to get botox in leg. This neuro didnt like my diagnosis and thought it impossible. He then sent me for another MRI and LP as he suspected MS. No change in MRI was seen and LP was again clear. I am now awaiting a third MRI appointment. To be honest I dont think it is MS as if the spasticity was removed in the right leg I would consider myself normal.
Hi Moyna, for a dx of MS they would normally expect to see more than one lesion separated by space and time. This means leasions that have appeared in different places (space) and at different times (time)… so the neuro would be looking for that on second and subsequent scans. From what you say I would think it is unlikely that you will get a dx of MS.
On the other hand, some of the scanners (esp the older ones) do not always show up lesions and also they can sometimes ‘hide’ on a scan… so given your symptoms they might continue investigating a possibility of MS.
It can all be a very frustrating process!
Spasticity, like all MS symptoms, can come and go (even with ppms)… so the fact that it’s gone now still doesn’t mean you do not have MS.
It really is a case of ‘wait and see’.
Anyway hon I really hope they can come up with what’s causing the problems as I know from experience how difficult it is not knowing what’s causing it all.
Small update. Gathered my courage and called neuro’s secretary today. She was very nice and read the letter from neuro to me (must be in the post by now, lol! ). No lesions on spinal MRI, so all good there. Just awaiting LP results now and final ‘label’.
Hi Mags, yep good no lesions on spine. I had none on my first MRI and a more recent one showed stuff that could be ‘wear and tear’… but my mobility is pretty much cr*p so I think they might be lesions.
Anyway hon good luck with the LP result. Not long now.
Yup, had a comment about wear and tear but that it wasn’t affecting any nerves. Hoping they’re going to include the radiologists report as I’m pretty sure I have cervical spondylosis (most of my pain is in my neck and I can’t turn it to the left properly).
Can’t help wondering what he’ll do if my LP is negative (titters)…
Thanks for the support hun, for some reason it’s really cheered me up (I think it’s as much that she was so willing to read it over the phone to me as the lack of lesions, lol!).
Just a general question that Pat may be able to help with. I have gathered that if you have PPMS you are more likely to have spinal lesions as your walking can be affected more often than not and this is the area that is affected by spinal lesions. In fact, anything in the lower regions ie bladder and bowel. My legs and bladder are my worst problems and I just wondered if this was true? Thanks, Teresa xx
Hi Terasa, as far as I know yes, it is true. I think spinal lesions can affect the legs, bladder and bowel more… and more people with ppms have spinal lesions (but not all).
I suppose if you think about it, the central nervous system is in the brain and the messages are carried down the spine to legs and lower body… so lesions there would mess about with those messages… but Teresa I’m not an expert (by any means!) and this is just my take on it.
I have the constant vibrations in my legs and feeling of electic current on soles of feet when I walk… plus weakness in legs… urine rentention and constipation and ‘hug’… I think these are probably caused by spinal lesions. On other hand, for me, tinnitus, double-vision, dizziness & some cognitive issues, I think must be caused by brain lesions.
Thanks very much Pat - your take on this is the same as mine. Most of my symptoms seem spinal related but I think a few are brain related too. Cognitive issues,dizziness, poor balance etc? I’m not too bad but my neurophysio programme seems to be making my legs worse than usual which is hard going and I seem to have to sleep more often in the day than I used to. The fatigue wasn’t too bad for me but seems to have got worse recently. Hope you’re OK! Teresa xx
Hi golden girls… fatigue, as you know, is my worst symptom and was my first symptom. It’s really difficult to deal with.
I suppose I have really learnt the ‘one day at a time’ rule… I can usually tell first thing what my fatigue is going to be like and that’s me in bed for the day (although occasionally I will pick up later) and sometimes several days on the trot.
Any exercise seems to do me in. Apart from my little walk which I try to take every day (although sometimes too tired even to walk up and down the corridor), I don’t really exercise.
I know you are meant to and people say it’s good for MS and good for fatigue… but I’m sorry that is not my experience. Exercise just puts me in bed for the rest of that day and often for days after… and yes Teresa it makes my legs worse too.
The health professionals just don’t seem to ‘get’ what this level of fatigue is like (and I have to say I have been critised on EL before now for saying that exercise can make MS symptoms worse… I keep my big mouth shut now).
My exercise is what I HAVE to do to maintain a human existance… shower, get dressed and undressed, wash dishes, cook simple meals, tidy up. I employ a cleaner cos the big stuff… hoovering, washing floors etc just exhaust me.
Stress of course makes the fatigue worse, but not only stress will knock me out… but excitement too. I tend to get over-excited (which I think is emotional liability caused by MS) and that also will send me off to bed.
Ok… this’ll make you laugh… the other day I got so excited that the bones under the carpark are Richard III that I had to go to bed! Complete fatigue meltdown!!! (sometimes even I’ve gotta laugh )
Thanks for writing that Pat! It’s good to know that I’m not alone with the exercise problem. I was trying to explain to the neurophysio lady today that last weeks session landed me in bed for the rest of the day. She was pretty good about it and just asked that I tried to do at least a few of the exercises each day as apparently if you don’t do them for four days, any benfit is gone and you have to start again…so, I shall be trying to work a few into my day (toe lifts while making a cuppa etc) to try and lessen the impact and maybe try some later in the day so I can be ill while I sleep!.
It a real pain isn’t it? And to think I used to be so fit!
Ditto Mags, I used to run around like a mad thing. We live at the top of a hill and I used to push my youngest son up the steep hill in his push chair when he was a toddler and he weighed a ton! But now the slightest thing I do knackers me and causes such sore quads but I keep doing what I can as the alternative is unthinkable. It still means that the majority of my time is spent on my backside in a chair. I’ve slept a fair bit during the day today so no doubt i’ll have trouble sleeping tonight but there is now way I could have prevented myself dropping off! Enough moaning already - I’m alive aren’t I? Teresa xx
You’re not moaning at all Teresa, just saying it as it is.
I was asleep 'till 3pm today as my car broke down on Thursday so I didn’t sleep all night fretting about it and then spent yesterday arranging a tow to the garage (and fretting about how much it was going to cost to repair). In the past I could have coped with the stress but at least I got a good 20 hrs z’s and am feeling a bit more human today.
Still no letter in the post but I did get my DLA renewal. Doesn’t run out until June but I’m not sure whether to apply now with a ‘possible PPMS’ dx or wait for a while longer. If I wait and end up with a dx of ‘mild MS where I don’t notice the relapses’, I’m afraid it might work against me in that ‘mild’ MS still puts me in bed most days and some days I struggle to walk at all but it makes it sound like I should be tiggering around…
Mags, re the DLA. As you might know, ‘mild MS’ is not actually a dx but neuro’s do use it. At first I was dx with ‘mild progressive MS’ (oh and even had a ‘benign ppms’ for a while… till another neuro said there is no such thing).
However if you do get a ‘mild’ dx it might be worth having a word with the MS nurse and just explain that the word ‘mild’ is going to be a problem with DLA. No point having a word with neuro (unless he/she’s unusually sympathetic) as they don’t usually give a toss about benefits… but the nurses are much more savvy.
