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M S SYMPTOMS but NEGATIVE MRI?

Hello,

I recently had a CT Scan, came back negative.  Moved onto an MRI without contrast of brain and spinal because E.R. doctor suspected MS.  It too came back negative, but my GP referred me to a neurologist, but it may take weeks to be seen.

My symptoms started as followed,
Headaches started almost 4 months ago,  regular headaches but mostly 'ice pick headaches'.
Dizziness
Unreal brain fog, where I can't think straight to save my life.
I've had muscle spasms throughout my life, but always thought it was normal.
Then about 3 weeks ago I woke up to my finger on left hand feeling like it was completely asleep, but it lasted hours, then my left arm started to get pin pricks and tingly at night time and began to feel very weak.
Above my eyes sometimes feels numb, and shooting facial pain that comes and goes.
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.  My right hip feels very achy at times.  One day last week I slightly lost balance and my legs just have out from under me.  
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 feel exhausted after little activity and the heat is my worse enemy.I

I was sure the MRI would come back showing some abnormality but it didn't, which I am happy about, but still doesn't give answers.

Is it possible it could still be MS given my symptoms even with a clear MRI
4 Responses
Avatar universal
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.
987762 tn?1331027953
COMMUNITY LEADER
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
2 Comments
Thanks for the response.

The only reason I had the MRI was because the doctor said they wanted to rule out MS due to my symptoms being similar.  And now being referred to a neurologist because my GP seems to think it is neurological.

The episodes feel that way to me because I have no idea why its happening, I'm firmilar with panic attacks and it does not feel the same at all.  It's scary to all of a sudden  get an abnormal sensation through your whole body and unable to function the way I normally would.
I'm really sorry but i must not truly understand what you are meaning, when people with MS are generally talking about being 'unable to function' we literally mean symptom x is physically stopping us from being capable of functioning normally....

A tremor example that physically effects peoples ability to function normally are Intention tremors, which are common with MS. An intention tremor which is also called kinetic tremor, typically increases in severity as the hand moves closer to its target and in MS it's caused by a lesion along the pathways that connect the cerebellum to other parts of the brain. An intention tremor can make even the simplest of every day life physically difficult, like being able to use your mobile, making a cup of coffee, pouring a glass of wine, brushing your teeth, putting make up on, getting your child's hair in pigtails etc etc

A sensation of an invisible internal vibration shouldn't change the way you physically function, it likely could effect you psychologically though and just in case you take offence with me bringing up mental health, people diagnosed with MS absolutely battle anxiety and depression just like anybody can, psychological health is just as important as physiological health!

If you are aware of panic attacks from personal experience then please 'consider' the potential of high levels of anxiety can also create a similar feeling of not only an invisible tremor or vibration but also cause a visible tremor too so if your anxiety is building it would be in your best interest to find ways that work to help you stay on top of it.

There are a couple of things you've mentioned that actually could be neurological but there is something like 300+ types of neurological conditions, even migraine and pinched nerves are neurological so try to keep an open mind on what it is your dealing with.

Hope that helps......JJ

  

Avatar universal
Hi Cleo46.
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.
Tina
Avatar universal
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.
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