Update and more questions...

[becca204]

Hello all,

I can't express enough how much this forum has helped me. I have learned so much from reading many of the threads. Thanks to all...

My LP came back normal, but still waiting to get follow up MRI to see if more lesions have developed (currently have 3). For the past three weeks my lower right eyelid has been twitching nonstop, even when I am sleeping.

My left foot had become increasingly tingly/numb, and when I went to visit my brother in NY, I was well behind everyone else on the streets. When I got back, my left hip started really giving me problems and now it pops with every step.

Does any of this sound like it could be related to MS? These things are on top of the current problems I am having with numbness, fatigue, word-fishing, and more.

Thanks, and prayers everyone here has a GOOD evening-

Becca

[jensequitur]

I think knowing more about the disease helps me feel more in control.  Definitely when I have a weird symptom it helps to know why it's happening, even if I can't stop it.

My right foot does that too.  I think it must be a hip flexor thing.

[becca204]

I have gained so much knowledge here, I am better equipped to go into an appointment and feel I have the right to be acknowledged and the right to continued testing as needed. I even was able to look at my MRI and understand more about the damage. I guess it makes me feel more in control, since I can't control this at all.

Today I have felt horrible. Left hip killing me, and noticed my left foot is pointing outward when I walk, like a duck. I am feeling dizzy, which hasn't happened in a while, and overall-crappy.

I also just found out from my mom that my maternal grandmother died at 62 of dementia, early onset. Makes me wonder if there is some sort of genetic link to my problems, whatever they are. She had pretty severe dementia at 50.

I did manage to get my 3 yr old to the park and get some laundry done. Small victories :)

Hope everyone is well, thanks Bob for the info on the MRIs :)

[jensequitur]

Ordinarily I would agree with Bob 100%. As Bob says, don't get hung up on the kind of MRI you've got - mostly the number of lesions isn't that important.  

But sometimes you've got a lesion in a weird place, like mine in the brainstem.  My 1.5T did not find the brainstem lesion.  Or rather, I should say that the lesion was there, but the radiologist didn't see it as being a lesion.  It wasn't until I had my 3T that the lesion was found by a radiologist.  But I have many symptoms - palatal myoclonus, exaggerated startle reflex, and hearing difficulties - that are explained by the brainstem lesion.  

An MRI is a diagnostic tool only.  It's not there to prove to the neurologist that you're having this symptom (although unfortunately many neurologists use it as such.)  A good neurologist will treat your symptoms, not the MRI.

My old neuro and the new one both look at the MRI to see what's wrong with me, instead of listening to me, the patient.  The new one at least has the knowledge to ask for the right tests.

[Sidesteps]

Would you pick out my machine? :)

[COBOB]

Don't get hung up on 3T vs.1.5T.  3T makes a difference on spinal imaging where the gradients are close.  The difference in brain imaging is not that great.  If you have 10 lesions on a 1.5T  a radiologist may see 12 lesions on a 3T.  20% increase for twice the magnetic density, that is about it.

Magnetic density is only part of the issue.  There is also RF pulse generation and detection.  This has a lot to do with the coil designs.  Anyhow, most of the time, 1.5 T magnetic density is more than enough for brain imaging, as long as the right techniques are used.  Bigger is not always better.  One of the reason 3T units seem to perform better is that they have newer better designed software, RF generators, and  RF coils.  Doubling the Larmor frequency by doubling the magnetic density does no good if the RF system and software are not improved.

Bob

[Sidesteps]

My MRI's were on a 1.5T as well --- there is a "spot" that is pretty obvious in the periventricular area that I think was missed (of course, I'm not positive since I'm not a radiologist but it's what I'm going to ask the MSologist about.)

I wasn't blessed with any of my Neurologists going over my actual MRI's. They read the report is all. The last Neurologist looked at xRay films --- they were the size of 3 x 5 pictures. lol ~ Cobob warned me that he wouldn't trust a Neuro that looked at MRI's on xRay films.

Jens has suggested that some of my symptoms also seem to match spinal lesions but I haven't had one done yet. I am also hoping that the MSologist will repeat my MRI's on her 3T machine under MS protocol. Mostly, I am hopeful this MS specialist will be able to explain some things to me better than anyone else.

[jensequitur]

I think you're going to get more data with a 3T MRI.  Whether this will reveal a lesion in the brainstem, it's hard to say.  With the problems in your foot and hip, it sounds like you have lesion activity in the spinal cord.  The word-finding problems are related to damage in the temporal lobe.

[becca204]

Thanks! I would love to know- and I think this was on a lower strength machine- so I am hoping to have a new scan done on the better machines soon....

[Sidesteps]

I googled --- none of those are areas of the brain stem. That doesn't mean something isn't going on there for you.

I will hopefully have a better idea next week what's causing my twitching/jerking. I'll relay anything the MSologist says as it's one of three main concerns for me.

[becca204]

Hi- thanks for your response-

My lesions are as follows: small T2 hyperintensity in the right external capsule,  small T2 hyperintensity in the left deep temporal white matter, and similar  small T2 hyperintensity in frontal centrum semiovale....

Greek to me- any thoughts?

[Deb61]

I also have a lot of twitching going on, so I do not know why twitching is not considered to be MS related.  I have twitching in my face along with the Morse code clicking sound in my ear caused by the palatal myoclonus.  I will also get little spasms or twitching in one of my arms, in my right upper thigh, and in my face.

The buzzing problem in your foot is very typical for MS.  I have buzzing and zapping going on in a part of my body several times a day.  The buzzing feels like it's a cell phone set on vibrate next to me!  Just yesterday, I though I sat on my cell phone and someone was calling me with my phone on vibrate!  LOL  I got up, looked for my phone and realized, hey, there's no phone there silly woman.

[Sidesteps]

My husband now has a new nickname for me, he calls me "Twitchy". LOL ~

I am not dx'd but myoclonus (sleep starts) then twitching were the first symptoms I noticed that raised a "what's going on here?"

I have had myoclonus, palatal myoclonus and strange buzzing in body partslike Jens. I also feel that this is pretty normal for MS. Myokymia is also a common symptom they say. It's a fluttering of your muscles. I have that occasionally as well near my eye and face. Weird stuff.

I've had them for 15 months, some have come up with a 'flare' and some have subsided depending on the symptoms. At it's worst, it progressed to being ALL over my body, bottoms of my feet, privates, scalp, etc.  Currently, my twitching is primarily in my left quad/hamstring, right bicep, right calf, areas on my face and palatal myoclonus.

I've read they think it's associated with lesions in the brainstem but they really have no idea the location in the CNS that might cause this. It's supposedly atypical manifestation but there is a lot who have this in various forms.

Where are you lesions? Do you know?  

[becca204]

Thanks Jen,

This twitching is crazy. I think I am going to name it.

And my foot is totally BUZZING! That is the perfect word for it- precisely how it feels, always.

My neuro was a general neuro, who has just gone on leave unexpectedly. I was never happy with her wait and see approach, only because she never seemed to really listen to what I was saying. Wanted to rush me off. In a couple of months I will have a new insurance carrier and am gonna do my best to get with an MS neuro. I have to wait over a month to get an apptmt. with another neuro on my current plan, which stinks, because I was supposed to get another MRI before my original neuro left.

I am hoping my upcoming apptmt. with my GP will help. She is great and was the first to really listen. Actually she was the one who ordered the first MRI which showed the lesions.

Thanks you so very much for your info. I don't feel so alone.

Becca

[Lulu54]

Hi Becca,
Some of these could be symptoms of MS, but they could also be coming from other problems.  The twitching eye would most probably not be from MS  - although sometimes it can be neurological, but that is rare from what I read.  I get that sometimes  on and off for a day or so and it drives me batty.

a good explanation of eye twitches can be read at

http://www.allaboutvision.com/conditions/eye-twitching.htm

The numbness, fatigue, word loss, etc. can be neurological but could also be caused by other things.  I'm so sorry I can't give you a definitive yes on any of this.  That is one of the frustrating parts of diagnosig MS - there are always lots of explanations.

I hope we'll see you around some more.
Lulu