PPMS is more subtle. I have it. I went in because I noticed over the last six months I have been walking slower. It is described as I used to run then I noticed it was harder to run, then I was walking and it got harder. I do not have a specific time frame when a symptom starts. I just notice it over time.
Spasticity is not a late stage symptom. Besides if you were late stage you would have lesions on the MRI.
Are you seeing a neurologist and what does he suggest it is? There are many conditions that have the same symptoms as MS. If you have a neurologist I would get an appointment or at least talk to his nurse.
They can at least treat symptoms. For me my legs are similar. They are sending me to physical therapy. They do not want to see me back unless I have a problem. My legs are so stiff I have trouble getting up in the morning. I had to get a toilet seat with handles and a shower bar. I still walk every day no matter how I feel even though I look funny and it hurts.
I forgot you can also get on muscle relaxers. Do not be afraid to treat symptoms it won't mess up a diagnosis. The thing is there are no real cures for things once you are diagnosed with MS. They use muscle relaxers for muscle pain and things like Lyrica, or Gabenpentin for nerve pain. It can take years for a diagnosis especially if your MRI does not show MS. My first MRI showed MS and it took two years for a diagnosis. I did not know they could treat symptoms before I was diagnosed.
Thankyou for your reply I really appreciate it, I thought the same that ppms usually presents a lot slower than that, but it's the spasticity that's worried me and how it's supposedly a bad prognosis etc.
I know stress doesn't help and I've never been so stressed because of this.
I'm in with neuro Monday evening to see what he thinks, Im worries that this mri will show a lot more, I just don't know what else it can be
I know Ms shouldn't present like this but nothing else adds up to it
My b12 level was 350 when the lhermittes started so it can't be that
Is it not a worry that it's on both sides already too?
Ever case of MS is individual. There are two things in MS inflammation and nerve damage. In the beginning it is mostly inflammation. Whatever nerves have inflammation those nerves will cause problems in the body. MS does not always behave in a certain way. Most of the time the first symptoms are with vision. Optic Neuritis or double vision. For me it was double vision.
My first attack was in 1965 at age two. I grew up with MS so I knew no difference. I thought I was normal. My parents did not tell me what all these doctors I was seeing were about. They never told me anything. The doctors back then did not think kids got MS. It is still rare.
I have learned not to freak over new symptoms. They may go away. Just let your doctor know. I use to worry about the worst outcome for my MS. I have learned you can't go by things you read. People are not statistics. People defy statistics all the time.
I got diagnosed with a deadly cancer three years ago. Everything I read about my cancer said I would be really lucky to live two years. It is almost three. Just in January the FDA approved a special drug just for a small group of people with my cancer. I am planning to be here along time. I had cancer in 14 places now I only have it in one.
I learned to not go to the worst case scenario that only harms me. Worry is trying to control the future and you can't.
Most people with MS today are not in wheelchairs. There are drugs to slow progression and lots of medications for symptoms. There are symptoms I live with. For fifty years I have had double vision, cognitive problems (I was in the slow class in school and kept back a year.), I have had headaches, vertigo ( I did tall building construction), and tremors. Now I have gait problems. I am very happy these days. I am adaptable. Things change in life especially health.
Fear is normal but you have to get past it or it can stop you in your tracks.
Hi Thanks Alex
Yiuve been through a lot! And seem to have A strength I would love to have!
My big worry has been how quickly it has affected my mobility based on the edss scores It would be quick ao far and it shows no sign of slowing which worries me
One other thing, when I first wake up I have no issues at all no pain nothing, is this normal?
Hi and welcome,
Your quite concerned about PPMS, it's one of the rarer forms of MS in comparison to RRMS (approx 80%) but your symptom pattern isn't really consistent with PPMS, (as Alex explained) PPMS is subtle. PPMS is a slow progression over a long time frame, and what you've described would be unusually fast for the progressive types of MS. You've also mentioned some improvements which is more consistent with RRMS than PPMS but...
I actually don't think it's likely to be a neurological condition like MS, because whilst your symptoms have escalated over the three months since it started, all your 'clinical signs' have continued to be normal, which isn't what typically happen's when demyelinating lesions (MS) are the cause of the symptoms.
Your MRI's are also clear of the expected lesion evidence, generally for MS to even be a possibility, there needs to be at least some suggestive diagnostic evidence and when there is not as you've mentioned "I had an mri in jan clear brain and c spine and two neuro exams jan and feb all normal", this would usually be indicating MS isn't the most likely explanation.
MS does have many mimics, so I would recommend you try to keep an open mind as to what may be causing your symptoms, it may not turn out to be a neurological condition like. Try to destress, you should have a better idea of what's going on after you've seen your neuro next week.
Hi super mum thankyou for the relpy it's genuinely really appreciated
My big worry was what else could cause lhermittes, plus all the other symptoms, I agree it sounds too fast for ppms but also the same for RRMS especially with the stiff painful legs, as far as I'm aware the only other things it could be are b12 and chiari etc
The one radiologist did suggest possible chiari but neuro dismissed it, I suffer terribly with anxiety since all this started but I don't know what else it could be, I think the rate of progression is what's worried me the most.
Is there anything else you think it could be?
I think my biggest concern is something like malignant Ms etc? I know I'm jumping to extremes but I don't know of any other illness that has all these symptoms, likewise I know RRMS or ppms don't usually present like this. I'm at my wits end with it all and really appreciate your help
Malignant MS is not a recognised form. You are catastrophising, which never does anyone any favours. I've personally found Cognitive Behavioural Therapy has helped me keep my own tendencies in check or at least manageable. Also, collections of symptoms need not have a single underlying cause. Sometimes they're just that—numerous unrelated symptoms. An unsatisfying reality, but many times the truth.
I think you might have become unnecessarily focused on MS and it's various different types trying to work out how your 'symptoms' can fit into MS, which is more than likely only adding to your anxiety and possibly leading you a little astray.
If 'Malignant MS' was a consideration, your MRI would not be very abnormal!
Extensive confluent areas tumefactive demyelination are seen with mass effect and defined rings and incomplete ring enhancement 1.
Only rarely are numerous smaller lesions seen disseminated throughout the brain 2. "
The main issue regarding the possibly of your symptoms being caused by any type of MS, is that you are saying you don't have any abnormal diagnostic evidence to indicate the 'possibility' of it being a neurological causation.
Symptoms are basically not the same thing as the clinical signs of neurological damage, with out having any abnormal clinical signs in your neurological assessments, it would be a more reasonable to assume that a neurological condition like MS is less likely to have caused the symptoms.
"My big worry has been how quickly it has affected my mobility based on the edss scores It would be quick ao far and it shows no sign of slowing which worries me" ..........How are your EDSS scores being measured, if your neurological assessment is not abnormal?
Q: One other thing, when I first wake up I have no issues at all no pain nothing, is this normal?"
A: That would seem abnormal for MS, MS issues often get worse as energy stores are depleted and fatigue increases through out the day, but to have no MS symptom every morning doesn't seem right at all to me.
Take a step back for the moment, it's really not a good idea to become worried about any specific medical condition at this stage.....
Hi all I really appreciate the opinions and inputs I really really do
I know I'm catastrophising and I know it's not good and it's useful to see an outsiders opinion of it and I appreicate that thankyou
And jj I'm basing edss on the fact it's become hard to walk any great distance, I like you think it's all presented in a weird way but I can't believe its all anxiety, especially the lhermittes, but thankyou again for the input and the time to give me an answer, your opinions are valued a lot
I'll let you know what the neuro says on Monday, I hope he finds another reason like b12 or chiari but I can't see it