Hi Guy’s, I’m wondering if anyone can help… Long story short… I’ve been getting weaker in my abs, core, diaphragm intercostals muscles for a few years now. This year, it’s moved into my back and has gone up and down, to the point where the muscles that are not weak hurt like hell… and I’m having problems standing, moving my neck etc. Also tight in the chest as it’s gone up the front a tad… all symmetrical… feels like my muscles are just seizing up or giving up? few shooting pains into my legs and the back of my arms now feeling weak
Any thoughts? Can MS start in your core like this?.. had lots of test that show nothing, Doc keeps sending me to the Physio, but exercise now is just making it all hurt. Any thought, pointers appreciated as I’m so fed up, concerned now…
Many thanks for your reply… the problem is, no one can tell me what it is… but the muscles are getting weaker for sure, and in turn others are taking the weight… end result is burning and pain top and bottom of the spine?
We have relatives with MS… but I’m told by Doc’s, that muscle waisting will never start in the core… and MS will not start in the front to back…
I’m really getting to me witts end with being told there is nothing wrong… to have constant pain and burning, and not being able to stand up and more…
Although my inability to control muscles started in my legs, this has spread to my core/trunk muscles.
The good news is that I have regained a lot of power to the legs. This may be due to the exercise I keep doing. I include core muscle exercise in my routine now.
We hear all the time that every one’s MS is unique, so when a doctor says that “it doesn’t work that way” I get a bit cross. Anything is possible with MS; when are doctors going to understand that?
You’re right, when some muscle groups don’t work, we compensate by using other ones. This is going to hurt. Physiotherapy is the only remedy at the moment.
You’ve said in your first post that you’ve ‘had lots of tests that show nothing’. What tests have you had? And have you seen a neurologist?
As far as I know, it is unusual for first symptoms to start in the middle of ones body, it’s more common for limbs, eyes, basically the extremities to be affected. But as Anthony said, everyone’s MS is unique to them, so there is really no reason why MS couldn’t start in the core.
But it’s difficult to know what to say unless we know what’s been tested, for example, have you had an MRI? A neurological examination? Nerve conduction tests, Evoked Potentials, Lumbar Puncture? Any others?
Or have you not managed to get your GP to refer you to a neurologist at all so far?
Thanks for your reply Anthony… I’m not sure it is MS but no one can come up with any other suggestions. I’ve had this for 5-6 years now, but every year, I get new things happening… last year it was breathing, but things recover… however, they never recover 100%… Its like something is going around my body attacking muscle groups for a few months… then it moves onto the next group… where it has been, recovers to 75% what it was?..
I know that sounds crazy and the doc says that can’t happen… but that’s exactly what I’m getting?.. I’ve even had my jaw hurting and not working right… but its ok now…
but now its my backs turn… and its so painful to do anything. i was going to the gym 3 times a week just to keep myself going… but even doing what I’ve done for year, now hurts me?.. all very strange… can’t stand… walking slow hurts… but I can run… however after… you need days to recover…
Problem is, they can tell me what I’ve not got, but can’t find out what I have?
I also get the bad memory, fog, no concentration, no stamina etc… but just getting a bit fed up of ‘lets do some exercise to help the muscles’ line from the doc’s… why can’t they see something else is going on also?..
How does it affect you in your core… are you getting back pain mid, upper, lower? breathing issues… is it affecting your walking etc?
Hi Sue… yes, I’ve had the lot except lumber puncture and MRI of the head… they have done my neck and lower spine… all clear.
The strange thing is that its symmetrical, in that I get the symptoms both sides, where as MS tends to scar the brain or cord, and that usually affects just one area on one side?.. I’ve asked for a brain scan, but they are reluctant saying someone aged 54 will have some abnormalities on the brain and seeing them on a scan will only add to the worry?.. who knows… but I’m at a point where working is becoming an issue… but I can’t just stop without some diagnosis for something…
Other issue is that I can’t find anything that takes the pain away… so it is starting to naff me off a lot!! thanks John
I suspect that a brain MRI would do wonders for your worry level. Yes, people can have abnormalities on the brain with age, but it’s relatively easy for a neuro/radiologist to identify lesions caused by demyelination. If you have demyelinating lesions, then you might be some way towards a diagnosis, and for many people, a diagnosis of MS is less worrying than no diagnosis, just miserable bloody symptoms with no effective treatment. And if you did have demyelinating lesions, then you could ask next for a lumbar puncture. If that showed Oligoclonal bands in the CSF (but not the blood serum) then MS would be more or less definite.
In your position, if you want MS ruled in or out, you’ll need an MRI of the brain, so you could try asking again. This time be clear that it isn’t possible to add to your anxiety about the bloody painful symptoms you are experiencing without treatment or diagnosis.
And if there is no demyelination showing up on your brain, then that’s it, MS ruled out. One less worry. I know you’d still have the anxiety of what the hell is causing it, but you’d actually be no worse off than you are now.
Hi Sue… 100%… my thoughts exactly… its the not knowing and daily grind of try to push on… at least with a diagnosis I can plan and get treatment…
I will indeed book to see my Doc again and ask to re-see the neuro… thanks for your help… sometimes you find yourself just sat here wondering what the hell to do next… I’m sure my Doc thinks I’m making it up / all in the mind…
Mind you, that process will take until Christmas I’m sure… but I’ll make sure I get it started… thanks again… John
First time poster! I have had tingling in my right foor since the first part of July, all blood work came back normal. I woke up a few days ago and my left hand is now tingling and shakes a bit. I get slight muscle twitches in my leg when resting where I can see the muscle twitch. Vision hasnt changed, and I walk roughly 10,000 steps a day without falling or without a dropleg. I have a nuerology appointment next week. My wife and family think I am over-reacting but I am convinced its early onset of MS and am very scared!
As you’re new to the forum, I imagine you haven’t worked out how it works yet.
What you’ve done is answer some one else’s post with a different query, you’d probably get more relevant and personal answers by starting your own. What you do is hit the New Thread button, give your thread a title, then post your questions, thoughts, feelings.
Meanwhile, what I’d do in preparation for your neurologists appointment is to write down your symptoms, with some approximate dates. Write down how long each symptom has lasted, whether anything has improved or whether it’s just stayed the same.
The neurologist will want to know what has happened to bring you to the point where you’ve arrived in front of him/her. Then I’d expect a physical examination, your reflexes, how your feet, eyes, hands react with different stimuli and doing different actions.
After that, I’d expect the neurologist to either decide that there is no neurological issue, or that s/he would like you to have tests to find out more information. So you could be referred for an MRI, Evoked Potentials, Lumbar Puncture or other tests.
Being scared that it’s the onset of MS is quite common (on this forum). You might be overreacting. But you might not be. All you can do is wait for the neurologists view next week. And you still may not have the answer.
Best of luck. Let us know how it goes. (Or start a new thread and get some more opinions first!)
thanks John