First post so I apologise if it’s a bit all over the place.
In the past 4 months I’ve had an MRI on my brain and an MRI on my spine, both of which have come back clear with no sign of lesions.
The reason I am worried about possible PPMS is that the symptoms I have now are subtle yet always there and I can’t figure out how they could be caused by anxiety or stress.
The symptoms are as follows:
There feels like there is a small piece of tape or like my sock is balled up underneath my left big toe which seems to be around 80% of time time. Sometimes I can’t notice it at all but it always seems to come back. This has been going on for about 2 weeks now.
I have random muscle twitches all over my body ranging from my right eyelid to my biceps, triceps calves etc.
My lower legs have an almost constant buzzing feeling which gets a lot worse when im on the toilet or cross my legs. This seems to be more noticeable when im sitting.
I haven’t had any huge balance or walking issues but I do experience some minor aches in my legs and also my arms. My right arm at time feels like growing pains and it seems a little harder to type and use a mouse.
Some parts of the day the left side of my face feels slightly tighter than the right side. It’s not debilitating but noticeable and annoying.
In the morning my whole body feels achy (especially my legs and hands) which goes away once I’m out of bed.
Currently I’m on Fluoxetine for my anxiety and am thinking some symptoms may be due to that but I can’t be sure.
I have seen multiple GP’s who have all ruled out MS which I find hard to accept so I am seeing a neurologist next Friday to see if there is anything else I can do.
Would the clear MRI’s give me hope in this just being stress/anxiety related or is there just too much going on for it to be that simple?
Any opinions would be greatly appreciated. As I’m sure most of you know it’s a nightmare trying to figure out what’s wrong and thinking of a future without being able to do so many things makes it so hard to function on a daily basis.
Welcome to the forum. Some of your symptoms are common to some MS sufferers. Then again, there are many individual symptoms suffered by people on here even though we officially have the same condition. In the early days many odd symptoms came and went. It wasn’t until my walking became affected before I went to a doctor with my serious head on. From the first anomaly in 1993, it took until 1994 before proper diagnosis.
Have a look round the MS website at symptoms and diagnosis to see if that can spread any light on it for you.
I hope the neurologist can give you some real answers although mine is openly vague because he can’t be definite about anything. It’s a very individual profile for all of us I’m afraid.
MS is notoriously difficult to diagnose, its more of a case of ruling lots of other things out first, but a GP cannot make that decision, it has to be a neuro, so at least you are in the right area by seeing one.
There are lots of things that mimic MS, having a clear MRI sounds good, perhaps a lumbar puncture may be the next step, but the neuro will decide if that’s necessary, but if it is MS, it will rear its ugly head and show something sometime.
Take one day at a time (easier said than done, I know) make a note of any new symptoms to take to the next neuro appointment, and if possible, take a friend or family member with you, as two lots of ears are better than one.
Try to keep your chin up, any questions you have, there is usually someone who can offer advice, or lend an ear if you want to rant, believe me it does help to be able to offload.
Thanks for the replies everyone. I think my biggest worry is that if it turns out to be ppms my life will turn into an awful loop of depression and fear. I’ve been able to go on a few runs over the past week without feeling like there’s been anything wrong so I’m hoping that’s a good sign. I also forgot to mention that I’m 25 and hearing it’s not as common for ppms to arise at a younger age gives me hope. I also think that without any lesions on an mri I can rule out rrms too. Rrms would have at least given me the stem cell treatment option. Sorry for all the negativity. I hope it’s all just in my mind.
Hi David and welcome to the forum. As the others have said, the symptoms are really varied and sometimes sound bizarre, with all of us who definitely have ms having a different combination thereof. Nobody here will tell you that your symptoms are in your head as we all felt that way at some stage, or were made to feel like hypochondriacs and only taken seriously once we had a diagnosis.
It is very difficult to diagnose as no individual test will you a definite answer. Hopefully the neurologist will be thorough, listening to your history (as Pam mentioned a list of your symptoms, what makes them better/worse and how long you’ve had them will be helpful) and if he/she thinks it’s appropriate, send you for the tests.
The MRI on its own won’t necessarily tell them whether you have it or not as my lesions were only in my brain and too few to be conclusive, but the combination of that, my history, physical examination and positive Lumbar Puncture gave me my diagnosis of ms, and my age and history made the primary progressive type most likely.
For your sake I hope it’s negative but you’re more than welcome to ask if you’re struggling with anything. Just don’t think that if it’s positive that your life has ended. It will obviously change but with the right attitude you can still have a good quality of life with this illness. Take care and continue to stay as active as possible without exhausting or injuring yourself.
Google - ‘Could it be B12 - an epidemic of misdiagnosis’ - this could be a B12 deficiency. l take - in liquid - so under my tongue - 5,000mcg Sublingual liquid B12 [natures bounty amazon] - l take many more B Vits and Vitd3 etc.
lf your neuro really thought you had MS - they would have done a lumbar puncture straightaway.
The toughest part at the moment is trying to work out whether i’m over thinking symptoms or if they’re actually having an effect.
Since reading mobility is a big factor in PPMS I seem to over think every step I take and every off balance episode I have that could easily be normal and something I never bothered noticing before due to less anxiety.
I have had a few blood tests now with B-12 deficiancys ruled out as everything seems normal there.
Another thing I have been wondering is that, is it possible to have RRMS without the attacks being extremely debilitating? I’ve always thought to rule out RRMS due to not having a major episode of numbness or eyesight loss and also that both MRI’s i’ve had have come back clear.
The only thing I can ever think of that would point to that is in December 2014 I was hit by a 2 week period of extreme vertigo in which I could do virtually nothing but sit down. I couldn’t walk around properly nor could I see straight. At the time doctors ruled it as just vertigo and nothing more, sending me home from hospital on 2 occasions.
Since my first post the tingling in my legs seems to have subsided a little but the sensation in my toe is still there and although it’s a minor inconvenience, it’s playing with my mind the most. I’ve also still got big time fatigue and at various times of the day an arm or a leg aches.
Once again thanks to everyone who has replied and offered support. Even if it turns out to be PPMS, RRMS or anything its great to know there are others out there willing to help, talk and just be positive. Right now its all making a difference whilst stuck in this state of limbo.
David - Even though your GP has ‘ruled out’ B12 deficiency - l would still get some and take it. l say this as l know from experience that the blood test they do is not reliable. So it would certainly not harm you to take the B12 5,000mcg daily. You cannot overdose on B vits. They are water-soluble so what is not needed is flushed out.
To answer your question regarding RRMS and not having debilitating relapses…there was a Barts blog (Barts hospital who do really good MS blogs) a few years back where they put forward a theory that PPMS people might have had very mild RRMS and only sought medical help when it had become Secondary Progressive & therefore more debilitating.
This really interested me as I didn’t seek help until 2006 when an episode of shingles left me with terrible fatigue that didn’t go away. Was dx with MS in 2008 and PPMS in 2010.
However looking back over a more than 20 year period I could remember many episodes of dreadful fatigue, vertigo, painful hip causing me to limp, double vision…etc etc etc. Either symptoms were so mild and went away so quickly that I didn’t bother to see a doctor, or I saw doctors and it was always put down to anxiety…which I believed…or hypochondria which I also believed!
I now think that I did have mild RRMS for all those years which means that actually I have SPMS and not PPMS as dx!
So to answer you question, yes, it can happen.
Also just want to mention that not everyone gets offered a lumbar puncture right away. I first presented to a neuro in Summer 2006 and didn’t get a lumbar puncture until Feb 2008…even though I later found out that the radiologist who did the first MRI (which showed lesions) had written ‘I think MS’ on my notes!
It’s hard being in limbo and easy to over-think every little thing that happens to your body. Try to keep stress levels down if you can.
That’s a really interesting theory. And one that is believable. Going back over the years looking for unexplained episodes would have been difficult.
Being told over and over again that anxiety/stress are the culprits of constant symptoms is tough because you can never know for sure. I thought getting both MRI’s would rule out anything but even that it not for sure. I’ll see if the neuro recommends an LP during my appointment otherwise I’ll try bringing it up to see if its a possibility.
The other thing I’m trying to take from all of this that even if it is PPMS it seems like theres still a good chance at a fulfilling life instead of the horror storys of wheelchairs after 1/2 years etc.
I enter this thread with a great deal of trepidation as I do not wish to cause offence. I understand your anxieties and I was in limbo myself for four years until a diagnosis of PPMS was confirmed.
Nevertheless, please do not over anticipate the result of the consultation with your neurologist. You are very young and I feel that you have convinced yourself that you have a major neurological condition, even before you have discussed the matter with a specialist.
As other people have stated, there are many conditions with symptoms similar to MS. Try to remain objective and think of the positives; after all, your MRI scans are clear, for instance.
You state that you are due to see a neurologist ‘next Friday’, which I interpret at Feb 19? I hope you feel that you are able to share the outcome with us on the Forum.
Until then, I advise strongly that you read no more about MS and try not to think about possible outcomes. Friday will be here soon enough.
Pat your experience is so like mine it’s scary, but whereas your shingles really knocked you out it was quinsy for me. I don’t care whether I’m dx to have pp or sp, I’m just so grateful it wasn’t psychological.
No offence taken at all Alun =). I completely understand your opinion and I have the same thoughts about how I’m currently feeling.
It’s so easy to fall into the trap of convincing myself that something is seriously wrong so I appreciate comments like yours telling me to think more rationally and have a more open mind.
Yeah the appointment is this upcoming Friday so I’ll give an update as soon as I’m done there.
Hi everyone, Quick update. Had my appointment with the neurologist today. He went through a range of little feeling and strength tests which all seemed to be normal. Had a look at my mri films too which I now know I never had a t spine mri just brain, c spine and lumbar. But even so he said they were normal. He brought up the possibility of MS but said it was quite unlikely from what he could tell. He said he’d order more tests if I hadn’t improved over the next 3 months. Hoping my symptoms keep improving and he turns out to be right but time will tell!
Excellent news David. I hope he’s right for your sake. We always love a new member to the gang but it’s even better when we hear that they don’t have ms after all. Let’s hope the rest of the tests are negative and they find another cause for your symptoms. As you know neurological illnesses are very difficult to diagnose and you obviously have a good Neuro who’s willing to work to find out what’s really wrong with you.