Beating a dead horse....

[4happygnomes]

Sorry to all the animal lovers (i'm one too), but you know the saying.  I just can't leave it to sit...this is mind boggling to me what I'm dealing with and I just know this is MS.  I have an appointment on Nov. 3rd with the 2nd Neurologist I saw, I haven't seen him since last October. He was not my favorite, but because I am a previous patient, I can get in sooner.   I'm really hoping he will agree to another spine MRI, and on a stronger strength.  The last MRI I had of the spine was back in December.  

I have such a strong downbeat nystagmus when my eyes are closed, that I can not keep my eyes shut, the force of the nystagmus pulls them open.  It is freaky!  It does not happen when I sleep, thank goodness!   This is something that is new, within the last couple of months.  

I go from a super tight and stiff left leg to the point where it is painful to stand,  to super noodly and weak..all in one day.  

My neck gets so stiff and spastic and then feels like it is inflamed (warm to the touch), so random.  Would that be a lesion in the neck causing that?

Plus all the other fun symptoms of dizziness, weakness, fatigue, muscle twitches, numbness, exercise intolerance...I'm a total mess.  And SO frustrated with not having answers.   I , of course, actually don't want it to be what I fear it is, but everything else has been ruled out...everything!

   I have not had a day without a symptom of some sort since this whole thing started.  Thoughts?

Karen

[essdipity]

Karen, I take a hefty dose of Gab every day, having built it up, and I have no side effects whatever from it. I need it for burning pain in my right leg that comes on like clockwork rather late in the day.

Every med has potential side effects, and everyone is different, yes, but not everyone will get the effects listed. I say why not try it. We don't have to suffer needlessly, and we don't need a diagnosis to treat symptoms.

ess

[supermum_ms]

Hmmmm the daughter works and plays on regardless......she's a pastry chef and gets huge psychological benefits from doing what she does, lol literally gets antsy if she's not able to create. She works around 45 hours as a TIC and another 20+ running her own business every week, lol her hours are about to get nuts with Christmas but she loves it.

All the women in my family have a high pain tolerance, if she's seeking help it's typically bad, lol after every surgery she's had, she has to go shopping once she's released so she can bake when she gets home, it's definitely therapeutic to do what makes you happy...

She was actually taking Gab and oxi but she had to halve the prescription because of side effects, she was experiencing loopy aclock after each dose. Taking half the Gab dose reduced the spams enough that she could cope with the pain of them, gentle massages has also helped, she's now tapering off the Gab......Interestingly these spasms typically last for around 6-8 weeks before it just stops again, the time frame hasn't changed but the level of pain with the meds definitely made it a lot easier for her to cope with it.

From what i know and understand about Nystagmus, 'up beat Nystagmus' is the uncommon type and weak upbeat Nystagmus is 'not usually' caused by central or peripheral as they would be the least likely causes. Both upbeat and spontaneous Nystagmus more typically resolve on there own, and because of it being weak, without fixation, no visual abnormality and possibly (because you haven't mentioned it) no vertigo dizziness with it as well, it's just all adding up to being 'more likely' a benign explanation eg migraine, medication side effect (eg SSRI's) etc etc than lesion related, as "benign associations are far more common than serious brainstem disease"
http://www.dizziness-and-balance.com/practice/nystagmus/ubn.htm

If you are concerned about taking gabapentin for an intermittent issues, you might be able to try a low dose to see how you tolerate it first, couldn't hurt to have a chat with the prescribing doctor about it.....

Hugs.......JJ  

[4happygnomes]

Thanks Kyle, yep...I don't think I'm to that point yet, but will be nice to have it on hand so I can start building it up in my system should it start to become unbearable.

Joiedecour:  That's what I'm afraid of.  Yes, I have random left leg pain, weakness, stiffness.  Fatigue, constant unsteadiness (vestibular deficit) with waves of dizziness.  Brain fog, saying the wrong words, 2 incidences of pointer finger tremor,left leg "catches",  muscle twitches....  blah!

Karen

[Joiedecour]

Karen, I'd think a "central sign" refers to central nervous system. Do you have any other CNS signs?

[kwarendorf]

Hi Karen -

Meds like gabapentin work differently than other traditional pain relievers. They need to be maintained at a therapeutic level in your bloodstream to be effective. It's not like Tylenol, get a headache take some Tylenol.

Only you can know if your pain is worth risking the side effects.

Kyle

[4happygnomes]

Alex, your journey to where you are today is truly remarkable, both in the "hiccups" along the way and the manner in which you carry on.  And you are right, I've always said that the reason for all of this (if it's ever found!) will not change my reality.  That bites!  

JJ, I feel for your daughter, that is an incredibly long time to be searching for answers for something that sounds so painful and disrupting to a young person's life.  She is so lucky to have you for a mom.   On top of everything else that you are as her Mom, you are so knowledgeable and such a great researcher...I'm sure that's invaluable to her!  

I was prescribed gabapentin for the nerve pain in my left leg...the thing is, I get it so intermittently that I'm not comfortable or to the point where I want to take a medication that has the potential for side effects  every day (and I usually am the lucky one to get side effects!) for something that is happening so random.  Maybe I'm being foolish in thinking like that.

So, I went back to look at the notes from the National Dizzy and Balance Center, which is where I was diagnosed with the vestibular deficit.  Under the Oculomotor Testing it states "weak up beating nystagmus noted without fixation"    And under the Impressions section is states that "Weak up beating noted in spontaneous testing may suggest a central sign".  I wonder, does that mean a Central Nervous problem as opposed to a Peripheral?  

Thanks
Karen

[supermum_ms]

I was also thinking about the association of vestibular dysfunction and Nystagmus too, but the hick up with the 'spontaneous (down beat) nystagmus' idea, is that it's still "....the eyelid is only moving super fast" and this is only when your eyelids are closed whilst you are sitting or standing.

The predominant physiology is bilateral rapid 'eyelid' movements and whilst you're connecting this to 'spontaneous (down beat) nystagmus' and your vestibular dysfunction because your sitting or standing........have you considered the possibility, you might actually be creating this to happen by unconsciously looking up whilst trying to keep your eyelids closed?

IF you force or try to hold your eyelids closed whilst your eyeballs are unconsciously looking up, this would cause both your eyelids to very rapidly twitch and your eyeballs would continue to be "rolling/pulling upwards" when your eyelids can't hold that position any longer.  

It's not uncommon for the pupil position when laying down to be unconsciously looking straight ahead or looking down, pupil position has a lot to do with your head tilt eg chin down -you look up, chin up -you look down and it will change your relaxed pupil positioning......the point i'm trying to make (though not sure how good a job i'm doing it's hot hot hot here today) is that what your experiencing may have more to do with your pupil position when your closing your eyelids, than your physical positioning of sitting or standing.

It's definitely something to consider, especially when you've only just seen a neuro-ophthalmologist and i gather there wasn't any signs of any type of Nystagmus or neuro abnormal visual issues found during your visual tests....

Alex makes a good point about looking into treatments for your painful and or disabling symptoms even without a dx, my daughter has had to again get symptom relief for her painful back issue, muscle jerks and spasms always in the one location in her back.....tests tests and more tests and whilst yes she has a double curvature of her spine (scoliosis), it's apparently not sufficient enough to be the cause of it, wow we started looking for her answers for this when she was 18, she turns 30 next year and we can't count the number of times we've been told they often don't know why it happens just that it is...

Hugs.........JJ

[HVAC]

Karen what you describe is very frustrating. The one thing I did wrong with diagnosis was waiting until I had a diagnosis to treat symptoms. The best thing for me has been a good pain clinic. I had to go to a couple. The doctor realized I had constant myoclonus, spasms, and nerve pain. He said my nerves were not getting the message to turn off. He said the same with my brain, hence the insomnia. It took several years to get on a combination of medications that work and I can tolerate. I also saw a physical therapist who worked on strengthening and stretches. What works for me does not work for other people. All of us MSers are unique.

I have all kinds of weird eye things. They can drive me nuts. I get overwhelmed easily. I got so bad I stayed home a lot. My service dog Polly made life so much easier.

I used to say to young doctors I have a hundred little things that will not kill me but added up they cause a lot of trouble. The problem is they are invisible to everyone but you.

I know at least a dozen friends who have gone to all manner of health care people trying to find out is wrong or to at least give some relief. These are good doctors. In most cases the doctors are stuck. The patients have tried anything.

Some day there will be a blood test for MS. Having a good doctor or PA and being assertive.

My parents did not try at all to find out what caused my neurological problems. They did not even tell me. I grew up thinking I was weak or a hypochondriac. So I tell people politely self advocate.

I self advocated today. By the end they thought I was from a doctor's office and solved the problem in minutes. I knew what to say thanks to anurse at my surgeons. I stayed polite.It really worked. I was tired and could have been a pain but I tried the super polite approach.

I had to go to a half a dozen neurologists to be diagnosed. They just had not seen a case like mine and did not want to diagnose it and be wrong. Went to at lest 25 in all.

I say it takes what it takes. For some people it is the first doctor and one MRI and others take years.The truth is treating the symptoms is the important part. When I got diagnosed with MS nothing really changed. I went on Copaxone. Otherwise I saw the neurologist once a year and nothing was different. Two years later the neurologist sent me to the pain clinic. I was ticked off because he had not even tried Gabenpentin and thats what the pain clinic did.

What I am saying is you do not get diagnosed with MS and then things get fixed. I kinda thought I would have at team and they would fix all my symptoms. Most of my symptoms I have learned how to manage but no real cures of symptoms. With meds some of my symptoms are better. I have to manage.

I get the frustration and the need to tell someone who would have a clue of what it is like. Venting is good for all of us.

Alex

[4happygnomes]

Thanks for taking the time to relay all of that info.   I believe it is "spontaneous nystagmus"  

"Spontaneous nystagmus denotes movement of the eyes without a cognitive, visual or vestibular stimulus. Most commonly spontaneous nystagmus is caused by a vestibular imbalance"

It appears that  the eyelid is only moving super fast when standing or sitting with eyes closed, but then the force of the movement is so strong that they are pulled open and that is when you can see the actual eyeballs rolling/pulling upwards.   I do believe it has something to do with the vestibular system since it does not happen when my body is fully supported like when I am laying down, and therefore does not have to maintain any kind of balance.    With the diagnosis of a vestibular deficit, it makes sense.

  Strange that both eyes do it, when I only supposedly have the damage on the left.

Karen

[supermum_ms]

Hey there,

I'm a little confused by your comments that you are relating to down beat nystagmus.....

"I have such a strong downbeat nystagmus when my eyes are closed, that I can not keep my eyes shut, the force of the nystagmus pulls them open."

"All the Neuros I've seen make mention of the eye lid fluttering in their notes, but also don't try to diagnosis or figure it out.   So crazy, because all I had to do was google it to figure it out."

You are saying that both your 'eyelids' are rapidly fluttering (twitching) up and down and if you try to hold your eyelids closed this fluttering forces your eyelids to 'open', right?

Technically, 'eyelid' fluttering-twitching-spasming-excessive blinking is called Blepharospasm's (Blepharo means 'eyelid'), it's more commonly benign and typically caused by dry eye, allergy, irritation, M/H, sleep deprivation, fatigue, certain types of medications etc.

Blepharospasm is actually a type of dystonia and it's characterized by increased blinking and involuntary 'closing' of the eyes, although it can also be induced with eye closure, it is measurable but if this only happens when you close your eyes, it may actually be within normal ranges and a reflexive response.

https://www.dystonia-foundation.org/what-is-dystonia/forms-of-dystonia/focal-dystonias/blepharospasm/more-on-blepharospasm  

Where as Nystagmus is a rapid involuntary movement of the 'eyeballs' which is a different issue, there is such a thing as eyelid nystagmus but usually if there isn't the typical visual issues as well, it's generally Blepharospasm and not actually nystagmus.    

Food for thought...........JJ
  

[cjtmn]

Are you having lots of headaches with the nystagmus? Migraines can certainly do strange things to your eyes. Last fall, when I was testing for my eye problems, the docs were all saying that the c-spine lesion they saw would not cause the eye problems. However, I'm dealing with hypersensitivity from my right jawline down the entire right side of my neck now, and the neuro did think that was related to one active lesion around C1-2.
Have you seen an orthopedist? Wondering if you have any cervical spondylosis starting - that can cause all kinds of crazy symptoms. For sure the heat (usually indicative of swelling) and pain.
I'm totally just throwing things out here. Fingers crossed for the next appointment!
Cheryl

[4happygnomes]

Thanks Barb.  I keep asking, almost begging,  for a higher strength MRI, they just won't do it.  Hoping the appointment on the 3rd, he will finally agree to it.

take care!
Karen

[mikeysmom1995]

Hi Karen,
I have 1 lesion in my cervical spine, but it has only been visible in one of my MRI s of that area. My Neuro said it could be the machine strength. She showed it to my husband and I on the one scan. She said they are sometimes more tricky to detect then the brain lesions. My brain lesions you can see as plain as day.
Be well.
Regards, barb

[4happygnomes]

Thanks Corrie!  Yes, I actually did just have a neuro optho appointment a little over a month ago for left eye pain...asked him what he thought, and he said he had no idea why that is happening. All the Neuros I've seen make mention of the eye lid fluttering in their notes, but also don't try to diagnosis or figure it out.   So crazy, because all I had to do was google it to figure it out.  Sometimes I REALLY wonder about the medical field!  

I have hyper-reflex on the left (symptomatic side) and a 25% vestibular deficit on the left, so far, that is the only diagnostic abnormalities that have been documented.    

This neck thing is so bothersome...literally, it's been a pain in the neck!  =-0

Hope you are doing well!
Karen

[Corriel]

Yikes, that is some strong nystagmus!! Have you seen an ophthalmologist or neuro ophthalmologist for that?

Spinal MRIs are a bugger, I have had symptoms related to cervical spine for over a year and a half and there is still nothing showing on the scans despite what seems to be permanent loss of some muscle strength in my dominant hand along with my other symptoms that my neuro insists is c-spine related. I am trying to be comforted that they are likely there just not visible.

The warm neck doesn't sound neurological to me but maybe someone else can shed some light.

I don't remember how your neurological testing went with the neuro last year or whether or not he noted any abnormalities there.

Definitely keep track of the symptoms that are lingering and/or new and hopefully the neuro can order a new set of scans. That seems to be par for the course for limbolanders. Wait about a year then come in again and if you still have symptoms they'll order another MRI.

Hang in there and I hope you get some answers soon,

Corrie