Hello no I have not read that thread but it sounds interesting! The people that brought up PPMS are not doctors but they do have MS I’m not sure if they PPMS or if they just know about it. I’m assuming they just know about it. It’s been a long road with new symptoms coming and going everyday. I did get some anxiety meds, they help me sleep that’s for sure! I’m going to try spending more time outside to find that open mind! Thank you for listening and the advice!
The surgeon is highly unlikely to of been referring to MS spinal cord lesions and cord compression looking the same on an MRI but if he specifically used the term 'mask' as in to hide, conceal, disguise, cover up, obscure etc well the only way i can make sense of that sentence being in relation to an MRI, would be if he was referring to the cord compression being coincidentally in the exact same location as a cord lesion though that would honestly still be very unusual.
Truly if he was referring to anything specific like symptoms or neurologically abnormal clinical signs i think i would still be questioning where he was coming from in relation to your particular situation and your multiple spinal MRI evidence/opinions etc
Just out of interest have you ever read the very long thread we did about 8-10 years ago called 'lies my neuro told me' it's a hoot as sometimes Dr's say Jaw dropping wacky stuff that'll have you saying huh err what ? a lot lol a few of mine are on it eg 'there are no visual issues in MS' huh err what ? :D (btw that might not be word for word as it was a very long time ago lol)
I don't know if the people bringing up PPMS were medical or general public but PPMS is diagnosed differently than RRMS is.....
"Unlike relapsing forms of MS, primary-progressive MS (PPMS) is characterized by a fairly steady, gradual change in functional ability over time — most often related to walking — without any relapses. Due to this basic difference in the disease course, different criteria are used to make an accurate diagnosis of PPMS. The criteria for a diagnosis of PPMS are:
One year of disease progression (worsening of neurological function without remission), AND
Two of the following:
A type of lesion in the brain that is recognized by experts in as being typical of MS
Two or more lesions of a similar type in the spinal cord
Evidence in the spinal fluid of oligoclonal band or an elevated IgG index, both of which are indicative of immune system activity in the central nervous system
Meeting these criteria can sometimes take a fairly long time, particularly if the person has only recently begun to experience neurologic symptoms. Several studies have suggested that the PPMS may take two to three years longer to diagnose than relapsing-remitting MS."
The symptom pattern of PPMS is also different than RRMS, PPMS is characterised by a slow continual progression over many years, average age group diagnosed is 40-50, it's also one of the least common types with only about 10% of MSers dx with PPMS, RRMS is about 80%. oh and PPMS seems to have a very high number of Obands though i can't recall off the top of my head what the theory is for that.
I genuinely can't see anything in what you've so far mentioned that would put PPMS or RRMS on your possible causes list over an above structural spinal issues, and keep in mind IF your neuro-surgeon hasn't indicated the possibility of you having an artefact or cord lesion being on your spinal MRI in his report, then he is not standing by those comments, all he has done is acknowledged the symptoms you are experiencing now are caused by a neurological issue, exactly what that is is yet to be determined.
Open minded you need to find, because it is honestly not in your best interest to worry about what conditions it might be before you have additional tests to know what it can't be, not sure that makes sense in my pea brain i know what i'm trying to say but alas i've lost my words again....
That’s good to know about Mayo , I have herd a few stories myself about ms diagnosed down there, one good and one bad. I’m trying to not think about having MS but the symptoms keep reminding me everyday, and back when all this started and didn’t stop primary progressive ms kept conning up, I didn’t even know there was other types until my client told me that she has ms. I’m a massage therapist so I get to learn more then want to some days about medical stuff, because it get scarier for people. My neurosurgeon just put in my papers that he’s sending me back to neurology because he says my symptoms are caused by a neurological issue he said nothing about the artifact. He did say that MS and spinal cord compression can mask each other, I didn’t think of it at the time but when I left I thought maybe symptom wise but on a mri. I’m very lucky to have found this forum. Thank you for being so kind and caring as you don’tget that in the real world! I’m very appreciative! Thank you thank , thank you!
So you are basically saying prior to the spinal surgery you've had 4 trained professional opinions (2 radiologists and 2 neurologists) never before indicate/mention or imply there was a visible artefact or lesion(s) any where along your spinal cord.
Well it would actually be 5 if you count the neuro-surgeon's more likely opinion 'prior' to surgery, because your surgeon would of had to of read your spinal MRI's and reports prior to going ahead with your disc replacement surgery and IF there had been a spinal cord lesion evident any reconstructive spinal surgery would of been in question because of the potential of the risks out weighing the benefits.
At the very least the risk conversation your surgeon had with you prior to surgery should of included the higher risk of additional nerve related issues etc due to there also being a spinal cord lesion complication...
Usually the simplest explanation is the more likely explanation and by following that pearl of wisdom, what your surgeon has come up with as a 'possible' explanation for what's happened to you after he has performed the spinal reconstructive disc surgery is probably one of the less likely explanation compared to the surgical complication one......is it possible everybody missed it before surgery, well yes because anything is possible but the question is, is it most likely to be what's happened, and the answer would be, no.
What i think you really need is an independent second neurological opinion on IF what you are now dealing with is from the surgery or addition disc issues or a previously missed spinal cord lesion and what exactly can be done to improve your situation now!
Again thank you for helping explain things! I had spinal cord compression surgery, they replaced my disc between c5c6 no fusion just the disc replacement. After 6 weeks my symptoms did not get better and I know it can take time for nerves to heal. When the neurosurgeon went back to look at my mri he said that there is a white line in my spine and he said it possible ms beings my symptoms matched and were not improving he said it could be artifact or ms, but it was on both my mris and I had two different spine mris done in two different states and the neurologist and the radiologist said no lesions in the cervical spine but yet the neurosurgeon says it’s something. I’m not understanding how they all don’t see the same thing. I’m just in limbo land for now and keep praying they figure me out!
Your welcome :D Talking and feeling supported and understood can often help make sense of the unexpected so don't be afraid to consider the benefits of a support therapist who specialises in medical conditions. Technically both those signs are abnormal neurological clinical signs and if you don't have the typical medical conditions that can account for it ie anxiety, stimulant medications, hyperthyroidism etc then the symmetrical upper and lower hyerreflexes pattern would most likely be pointing towards a spinal structural issue and or cord compression as the most likely causation...
"Singly or jointly, the reflexes of Hoffman and Tromner have evolved to form an integral part of the current, standard neurological examination. When present bilaterally, Hoffman sign is usually an indication of hyperactive deep tendon reflexes. Although disease of the pyramidal pathway may be responsible, healthy individuals with hyperactive reflexes may have Hoffman sign such as in cases of anxiety, hyperthyroidism and stimulatory drugs. When asymmetric or unilaterally present, especially in combination with other pathological reflexes or abnormal findings, Hoffman sign usually signifies disease of the nervous system"
It sounds like your vision 'might' have more to do with a misalignment issue like oscillopia...
"There are two types of oscillopsia: permanent and paroxysmal. Permanent oscillopsia occurs due to a misalignment in your eyes, while paroxysmal oscillopsia often results from an abnormality in your vestibular system, which controls your sense of balance."
"The main symptoms of oscillopsia are that objects in your visual field appear to jump, blur or shake when you move, or sometimes even when you’re standing still. Simply moving your head is enough to trigger the visual instability, but bigger movements like walking, running or driving in a car can be particularly disorienting for patients with this condition."
I really don't much about this so i can't give you anything about if this could be associated to your structural spinal issues or a completely separate issue but your treating ophthalmologist or optometrist should be able to explain exactly what it is called and the types of conditions, if any, that are associated with those specific visual issues to give you some directions if there is something possibly more to it...
I don't know the type of surgery you had but recovery time will depend on the extent of your surgery, if it was really basic it can still take 3-4 months for nerves to heal and it can take up to a year though depending on exactly what was done, physio, water aerobics etc are often part of the process too so it might be worth making an appointment with the physio you once saw and trey to get a full assessment before your next neuro appointment, cause if there is something notable it will get picked up with a physio assessment and that will be helpful information for your neuro to have.
Hope that helps........JJ
Hi and welcome,
Your post is not very long at all :D the types of symptom information you've provided would not typically be suggestive-consistent with a neurological condition like MS though. The general red flags that would point away from MS are some of the things you've mentioned eg "random tingling and numbness all over my body", "random twitches that come for a few seconds here and there" , continual worsening and or multiplying of symptoms over a short time frame which in relation to MS your 15 month time line would be......
I don't actually think a peripheral nervous system causation like your spinal cord compression caused from the c5-c6 herniated disc on it's own could explain everything thats happened to you, but the additional symptoms you mention that only came about directly after the structural spinal surgery would usually make your spinal surgery the most likely causation so i'm at a loss to understand why your neurosurgeon would even mention MS, cord compression from a herniated disc is completely different to MS spinal cord lesion(s).
I also don't understand why you'd be dx with bilateral tendinitis in your index fingers either, a bilateral presentation in an isolated digit i would think would be an unusual repetitive stress injury lol i can't even think of anything work or sport related you could of been doing apart from 'excessive' bilateral one finger typing or maybe knitting for tendinitis to be thought of as being likely. I honestly would of thought the bilateral pattern would of put something like a pinched nerve higher on the list of possible causes than tendinitis.
You don't mention what visual issues you have been dx'ed with, the types of visual dx related to MS are Diplopia, Nystagmus and Optic Neuritis so nothing really stands out as specifically MS-ish "eye twitching", "my eye feels like it’s got something on it all the time, dry eyes", "worsening vision", prism prescription glasses are used for numerous visual issues anything from muscular related causes eg graves disease, strabismis etc, brain related causes eg stroke, head injury, migraine etc and nerve related causes eg MS, diabetes etc
I really don't think it's sounds like a neurological condition like MS would be on your possible causes list but i think the additional suggestive spine related symptoms you've experienced after surgery would warrant another spinal MRI to see IF something else is going on further down your spine.
Sorry i couldn't be of more help, hope that helps a little....JJ