No way to edit, but wanted to add that the tingling is now almost all the time and stabs of pain going through other parts of my body with no triggers.
Hi and welcome,
Up to 5% of people diagnosed with MS do not have the objective MRI evidence required to meet the MS Mcdonald criteria, but having said that though for someone to be diagnosed they would still have to have objective evidence of at least two areas of myelin loss, or demyelinating lesions, “separated in time and space.” as well as having all the other diseases that can cause 'similar-same- neurological symptoms have been objectively ruled out.
Which basically means that whilst the MRI wasn't able to pick up the lesions, these patients still have objective clinical signs that lesions have occurred in different places within the brain, spinal cord, or optic nerve at different points in time in their medical history, they will also have the other MS suggestive-consistent objective test evidence pointing towards a neurological causation like MS too...
Keep in mind that MS is a condition that effects the central nervous system so there is only a few 'symptoms' that can be classed are highly MS suggestive because most of the 'symptoms' associated with a neurological condition like MS are also associated with hundreds of other types of medical conditions.
With the way MS lesion damage typically presents and develops over time imho you haven't actually mentioned experiencing anything that would be particularly suggestive of a neurological condition like MS and IF i am understanding you correctly, with the 'majority' of what you've mentioned experiencing has only been happening in the last 3 weeks and they are not the types of symptoms usually associated with MS..
eg "My upper to middle back feels very tight and painful when I bend my neck forward (chin to chest) with periodic pain in neck and back not due to bending neck."
The closest MS related symptom to what you've described is a spinal cord sign which is called the Lhermitte's sign, also called Lhermitte's phenomenon or the barber chair phenomenon BUT Lhermitte's is not the same as you're describing because it is a sudden 'electric shock like sensation' triggered by bending your head forward towards your chest, the zap sensation can also travel down your arms and legs and whilst Lhermitte's is associated with MS it is also associated with structural spinal issues which are the more common causes.
You also say.. "My right hip feels very achy at times." "I feel very stiff and weak most times and like my body is heavy." "Some nights I have what I would prefer to as 'episode's' that terrify me because my whole body feels like it's vibrating and I can barely function, no triggers."
I'm not actually sure what MS associated issues the above could be associated with.......i actually first described the raid tremors i started experiencing over a decade ago as an internal vibration that i could feel but wasn't visible and years after it started accidentally discovered a neuro trick that makes an internal vibration visible. I placed a lottery ticked between my lips whilst i was cleaning the bedside table the lottery ticket was sitting on lol probably a weird thing to do but by softly holding the paper between my lips, that piece of paper was unexpectedly and obviously vibrating so the invisible vibration had become clearly visible.
I'm honestly not sure why you wouldn't be able to function or barely function, nor why the sensation would terrify you though, internal vibrations are more weird and annoying but aren’t as life-altering as external tremors are which can make it really hard to function normal daily tasks, could it be more along the lines of what can happen with extreme anxiety and or a panic attacks...?
With the way lesion damage works these types of presenting symptoms, symptoms that are happening in the entire body, develop and or multiply over a very short time frame, occur in random locations and or more around the entire body etc etc etc are generally the types of symptoms and symptom pattern that are pointing away from neurological conditions like MS and with your MRI's being clear too its highly likely what you are dealing with is going to turn out to be one of the medical conditions that mimic's MS and you'll likely need a lot more tests before you find out what is going on with you.
I hope this helps........JJ
I’m brand new to this community. I was diagnosed with MS in 2006. There are many diseases and conditions that have symptoms in common with MS. And symptoms experienced by people with MS can vary greatly. I have however experienced almost all the same symptoms you described, including the horrible ice pick headaches, sharp pains in my face, horrible internal vibrations that were overwhelming fatiguing, unrelenting and made walking extremely difficult, in addition to even being able to concentrate and process information when I was at work. (The level of interval vibration one person experiences may very well not be the same as what another experiences.) Three doctors, including a general neurologist and a neurologist who specializes in MS, attributed the symptoms I had to the MS. So In my experience those symptoms are possible with MS. The pain in the upper back and with bending head forward has been attributed to pinched nerves from central and lateral stenosis of my cervical spine. The numbness, tingling, and pain in my hands and arms can be from either or both. I think more often it’s from my neck. The tremors in my hands were attributed to the MS.
It is difficult to diagnose many neurological and autoimmune diseases. You definitely need to have complete spinal MRIs, with and without contrast, in addition to brain MRI. And if you can find a neurologist that specializes in MS, all the better. It can be frustrating trying to get a diagnosis. And yes, it can be scary when your body is not functioning like it normally does and you don’t know why!
I hope you find someone who gets the puzzle solved soon.
Oh, silly me! I see you have had the spinal MRI in addition to the brain. All I can suggest there is making sure it is the strong 3 MRI rather than the 1.5. I understand from my recent readings that the weaker 1.5 MRI can miss between 25-40% of small lesions.