Avatar universal

Can’t get diagnosed, so frustrating!

Hello, for the last 15 months I have been having symptoms, I have been through hell and back I just can’t seem to find answers. My first symptom was sharp, stabbing index finger pain bilaterally, was told it was tendinitis and was told to come back if it didn’t get better, well things got worse I ended up with burning arms again in both arms, went and had a mri done and they found 9 lesions nonspecific they said. A few months later my whole right side of my face tightened up, I had trouble swallowing this went on for a few months, went back to a different neurologist and did some exam stuff and he said my symptoms are not neurological, by this time I had random tingling and numbness all over my body plus the burning in my arms and pain in index fingers, he said let’s do a mri if the spine all came back good except some c5c6 herniated disc was told that was not the cause of my symptoms. Finally went to a neurologist out of town she did a spinal tap, and a vision test, both came back good, but my vision has now also gotten worse had to get prisms put in my glasses, she told me to come back in 6 months and repeat mris, those came back with no changes and no lesions in my spine, but now I have spinal cord compression. She said this is what’s causing my symptoms, so i had the surgery and my symptoms did not improve, now I just have more new symptoms like eye twitching, and random twitches that come for a few seconds here and there, my eye feels like it’s got something on it all the time, dry eyes, dry mouth, burning in the back of my head, shooting pain in my feet, stiffness in my right leg, weakness in my right leg and arm, constantly using the restroom and a UTI, I never had one before in my life. I have had blood work done like crazy all that came out of that was a low white blood count. My neurosurgeon said it might be ms on my spine at my checkup, why can’t the radiologist, neurologist and neurosurgeon all see the same thing on the mri? Thank you sorry this is so long!!!
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Avatar universal
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!
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987762 tn?1671273328
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....

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Hello so back in August I went and had Mri of my brain and spinal cord again and everything came back the same as it did in January, they say my symptoms are still caused by cervical cord compression that’s caused cervical myelopathy, I had some injections done in some trigger points in my back and neck and I have done some hydrotherapy, things have improved a little bit, but I dint think cervical myelopathy causes dry eyes and mouth and twitching eyes, sometimes even when I blink my eye twitches, I feel like I have body fatigue not like I’m tired I need a nap but my body don’t want to function sometimes and sometimes they symptoms I had went away are starting to slowly come back. My neurologist told me not to worry about MS and I’m definitely trying not too but what else could explain these other symptoms? Is there a page for people with cervical myelopathy on her I searched and have not found much information on the subject.
Have you looked up the side effects of each medication,  combined interactions etc your taking because things like 'dry eyes and mouth and twitching eyes, sometimes even when I blink my eye twitches' that your thinking mean it could be something like MS still, are all fairly common side effects?......JJ
That’s  another frustrating part I’m not on any medication except my vitamins and I’ve taken those for a long time plus I stopped them when all this started. I so frustrated again I feel like m back at square one again!
Hello it has been a while since I have been on here,  still looking for answers,  I had another brain MRI done in February and they said for the last two years my mris have been stable and that is good news, with that being said I still don’t have a answer to my symptoms, I have 9 lesions in my brain that they say are non specific,  in the subcortical/ preventicular area, and this time on my Mri they say I have more lesions then I should for my age, I’m 40. They never said that before so now I feel like they are contradicting themselves,  some of my symptoms have improved but others stick around such as the tingling, I worked out the other night I did a HITT workout and I was doing a move with my arm, the next day I had tingling in that arm,, so from what I understand is that symptoms of MS can get worse after exercise. I’m just so lost still and I do have another appointment with a new neurologist in July to get a second opinion, my first one was great and I also had a nuro radiologist look at my scans as well with her, but after that appointment in February a few months later my tongue was twitching, along with some random facial twitching too. That comes and goes too. I guess I’m looking for some advice on what to ask this new neurologist. I don’t know what to ask or say anymore! Please help me if you can
Thank you!
Hey there,

I think its never a good idea to mention you believe you have MS and not what you were diagnosed with, or mention you think an MS diagnoses has been missed, or that you think your x or y symptoms are the same as the MS symptoms, or that you've been reading a lot about MS etc etc

MS is one of the top 3 medical conditions that someone with a health anxiety related mental health condition will be conserned they have, so unfortunately a patients conserns about having MS can be a mental health red flag...

Neurologists generally prefer to focus on your diagnostic evidence and your corroborating abnormal/normal clinical signs, they usually have a set of questions they need/want to ask and your answers are what helps them focus towards or away from potential medical explanations so its often better to stick to what you know to be true and not what you think it could be.

One of the first questions could be something along the lines of 'what brought you to see me today' if you've made an appointment without a medical referal, so you could start by saying that you are looking for insight on how to further treat your residual symptoms, as well as the new symptoms you've been experiencing since being diagnosed with cervical cord compression, which is ultimately what you are looking for (right?) and will give you a place to comfortably start.    

"some of my symptoms have improved but others stick around such as the tingling, I worked out the other night I did a HITT workout and I was doing a move with my arm, the next day I had tingling in that arm,, so from what I understand is that symptoms of MS can get worse after exercise."

You've actually missunderstood what you've read about MS symptoms worsening with expercise, basically what happens is exercise increases your core body temperature and with the way damage from MS lesions works, a rise in core temp results in a temporary worsening of pre-existing symptoms, and they return to their normal again once they've rested and cooled down enough.

What you are describing is the tingling sensation of parathesia, turning up many hours 'after' you've been doing a high intensity workout, which is not the same thing at all as what happen's when the tingling sensation is caused by MS brain and or spinal cord lesions and the MSer is experiencing an exercise induced psuedo relapse.

Hope that helps.........JJ
Avatar universal
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!
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987762 tn?1671273328
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!

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Unfortunately I have had  3 trained professionals look at my brain and  2 neurologist and 1 radiologist and 5 look at my spine 3 were neurologist 1 radiologist and 1 neurosurgeon so yes it’s hard to believe that I can’t get diagnosed and it’s frustrating being told no MS to possible MS. My symptoms are not getting better but slowly worse and now I don’t go back until August, my family doctor won’t send me to Mayo wich I don’t understand why he won’t . Thank you for the advice I really appreciate it!
Way back when, on this MS community they use to say 'hold the Mayo' because of the common stories MSers had not being diagnosed by Mayo when they should of been because they didn't tick all their boxes, and or others left in compete limbo by Mayo and dx elsewhere etc etc Whether there's still the same types of diagnostic issues with MS at Mayo i honestly couldn't say, it's been years so hopefully it's not but just in case i thought i'd mention you not being refereed to Mayo may actually be a blessing in disguise....

I honestly don't think i'd put much weight in what your neuro-surgeon has verbally said to you after the surgery as a possible explanation to why your symptoms have changed/worsened, because it's highly likely to be nothing more than stressful misinformation with the amount of professional eyes you've already had on your MRI's.

btw did he ever put his opinion of there being a possible spinal cord lesion or artefact anywhere in your written reports?  

I honestly believe it would be in your best interest to take a step back from letting your head space be bogged down by your neuro-surgeon mentioning MS, or an artefact (which btw is the same as saying this hard to see thing i didn't see before may be something or may be nothing), as a possible explanation for why you didn't get better as expected.....you really need to try to be very open minded to what the cause of what is happening or has happened after having reconstructive spinal surgery, and firmly keep in mind that you have been diagnosed with cord compression from a structural spinal issue, which then required disc replacement surgery, you've had the surgery and your original cord compression symptoms did changed after the surgery but you also acquired some different located similar issues too so the odds are that this situation your dealing with now is inter related to what you have already been diagnosed with, and not a neurological condition like an MS spinal cord lesion that everybody previously missed!

August does sound too long to be waiting if your symptoms are getting worse, i'd recommend you consider contacting your neuro clinic and explain your symptoms have gotten worse since your surgery and request they put you on their cancellation list, which might help you get an earlier appointment and if they won't do that, ask for a copy of your records so you can take them with you when you find another neurologist who has an earlier appointment, and if that doesn't get you anywhere either then you might need to contact every neuro and or neuro-surgeon trying to find one who can give you an appointment.

Avatar universal
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!
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987762 tn?1671273328
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  
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987762 tn?1671273328
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
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Thank you so much for responding! It’s been a very tough and long road. When I was diagnosed with tendonitis I knew it was not tendonitis I went to PT for it and they laughed.  When I saw my neurologist she said I have a positive Hoffman’s sign and hyper reflexes throughout and she was for sure that my symptoms were from my spinal cord compression ( I still didn’t believe it) so after my surgery my eyes twitched and it was mostly my right side and that’s the side that’s been hit with the weakness after it was tight for a while. I can look in my closest at the plastic hangers and they move back and forth but when I cover one eye it stops and sometimes my eyes get like a smear over them but if I blink it goes away.  Now today I can just be standing and I get a random pain in my arm or leg it hurts for a bit then goes away. Just so many weird things happening and now I don’t see my neurologist until August it was supposed to be in July to repeat brain, cervical and spine mri!  Thank you I do appreciate just being able to talk about this!
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