Thanks for your comments. Back in 2006 the jerking was very bad and was always there...day and night. When I saw the neuro then he told me that MS was 'on the cards'. I had lots of other tests but there was no conclusive diagnosis. My MRI at that time showed very small 'white marks' that he wanted to keep an eye on. I think it was reported on as normal
Now it seems to be mainly when I lie down but yesterday at work I had it but only mildly....not enough to be seen by anyone else. I think that I try and tell myself it is anxiety and that it will go away.
I am not keen on any drugs as I have just come off all my medications after losing a lot of weight. I no longer take hypertensive or diabetic medications. I will just put one step after the other and see where I end up with these investigations.
I will get an appointment for the neuro/ophthalmologist and see what he says. You are so right as every bit of info helps towards finding the cause of my problems. .
regards P
Hi, Aussie. I think you should go ahead and see the neuro-ophth. If you can get an earlier appt. that would be ideal.
None of the other tests you're scheduled for will influence this outcome in any way, and eyes are nothing to mess around with. The thing is, your eye can appear to be perfectly normal upon examination, but you still can have ON. That's because the lesion can be further back on the nerve. You are still in the evidence-gathering stage, and the investigation by the neuro-ophth. could provide significant information. Here in the US, the wait is often long for this type of appointment, so if you have an opportunity I think you should take it.
As to myoclonic jerking, that is very common with MSers. You mention that it used to embarrass you when it happened around others, and that was during the day, I assume. Now it's happening just during sleep. I'm no expert on this, but I doubt it makes a lot of difference. Either way you can't control it. Sleep is a very complex function that even neuros haven't really figured out, but maybe your brain's 'sleep center' is affected by a lesion causing the jerking.
I have trouble with mild jerking, nearly all in the evening and before bed. It's not bad enough to warrent a med, and I'm on enoough of those anyway. But others here have much more trouble, and are medicated for it. I'm not sure what they take. I suggest you ask your neuro for something, if this is really bothering you and your husband.
Good luck with all of this--it's a long road, which I'm sure you already know.
ess
hi again.......it was a normal ophthalmologist......an eye surgeon/physician. Strangely enough he referred me to a neurologist who is an ophthalmologist (see above) but I can't see the point in seeing another neurologist before I get my FLAIR MRI and also these other tests I am having.....ie balance tests, audiometry etc. BTW.......is the audiometry testing normal for diagnosis of MS. My neuro said that this should give a definitve answer. The hospital has booked me for these tests on the 3rd of September.......so far away!. It's so strange that my eye bothers me so much and yet they keep telling me it's normal. i think I'm going nuts!
The other thing is this myoclonic jerking of a night.....have you heard of this? I first had it in about 2006 and it was quite severe for many months. It was apparent to other people when I was out and about......quite embarrassing as it would make my whole body shake. The result of the investigations at that time was abdominal myoclonus of unknown aetiology. It has returned again and sometimes it can be quite 'violent'. It wakes both me and my husband. Every time I make the slightest move in bed I start jerking from my abdomen right down through both legs. Not sure that I have seen this described abywhere on this forum.
P
Aaah, so sorry the appt. didn't reveal more.
should poop-a-round - it's def. not very merry.
Was that a neuro-opt, or reg. opth?
Well, have been back to the ophthalmologist again today for review of my eye problems. Once again he has reassured me that he sees nothing wrong with my 'very healthy' eyes. This of course is great! He doesn't discount optic neuritis but can not make the call.
He read my first MRI result and says that the problem is a neurological one not a ophthalmological one. He has now referred me to another doctor......this time he is a neurologist who is also an ophthalmologist. Not sure whether I should see him before or after my FLAIR MRI which is in about two weeks.
I think I have just climbed aboard the merry-go-round!!!!
P
Apixie,
I sure didn't realize they didn't recognize it there - heck, I thought Lymes was everywhere, except extreme sub zero, like Antartica. Interesting...
-shell
I just wanted to add that i'm not sure its such a bad thing if you've worked with your neurologist professionally (unless you were a problem employee or he was a problem boss lol) he knows you a bit better from the years he's interacted with you and he probably trusts what your saying is true, especially if he's still asking for your professional opinions. I would expect he's not going to make a rash judgement, either dismissive or to dx xxx, if he knows you or feels he does, he's more likely to go looking for your answer and then tick all the boxes to be sure.
I think you have a few complications that makes your big picture not as clear, so you want someone who's going to be interested enough to go looking.
Cheers...........JJ
Hi Shell, Thanks again for your comments. Not sure if you realise that I am in Sydney Australia. I only mention this as you mentioned Lymes disease. We don't get Lymes here in Sydney although occasionally someone tells you they have it.......although the doctors and medical admistration always deny it. We certainly have ticks here and in my area we get them all summer......but I believe (and could be wrong) that Lymes comes from a particular tick that we do not have here.
My general practitioner is very good as you mentioned. I have only been to her twice as I have recently changed to her practice......I had a great one before but you could never get an appointment when you needed it. When I have the momentary blindness they wanted me to wait about 9 days for an appointment so I change to the one I have now. Good move....I can get an appointment the next day when i need one.
I will keep in touch as all these apnts fall into place.......
Regards P
Hi Patricia,
I'm glad to see you back. Your neuro may not tell you his findings at all during the workup. But, the subtle comment made i.e., "MRIs are not normal" is a good sign that he is a keeper for now. You are getting a full work-up from what you describe. What a good regular doc you have too - looking out for you and having a 2nd in the buffer by chance you need a 2nd opinion.
This takes awhile, unfortunately, and I'm sure you are frustrated w/what you are dealing with physically. It drains you mentally too - by trying to get through the days. We very much understand how hard that is.
Again, I do feel the doc is taking this serious - by looking at the changes in imaging, ordering the proper sequences, and furthering the workup. The stiffness and muscle pain though is often secondary to MS the disease itself, due to imobility, etc., but if doc has not done so already, a thorough invest into lymes should be exhausted too - just for good measure. It's a huge mimic.
Looking forward to helping you out, and hope we can be here for you while you get through this next round of tests.
-Shell
Thanks for your comment...... I have today seen my general practitioner and she has suggested a review by the ophthalmologist and I was lucky to get an apnt for this Thursday, for review of the blurry eye.
She suggests I go ahead and have all these other tests as well as a full audiometry screening. When these results are available she will refer me to another neurologist as she agrees that I need another pair of eyes cast over the whole picture. I will keep in contact as the results come to hand. Thanks for making contact with me........I have enjoyed readings lots of different posts.
P
Hey, Patricia - welcome to the forum!
To me it sounds as if your MRI findings are indicative of MS. Lesions around the horns or in the periventricular area are suspicious, and especially lesions on the pons.
Optic neuritis is scary, no question. You can get a lot of symptoms from that eye - bad reaction to flickering light, color changes, pain, nystagmus...
Typically the treatment for ON is IV steroids, but the neurologist will hold off on giving you steroids until they're sure that this will help. It will cause the ON to go away, and there's less of a chance that it will come back.
Back again. I have now had my follow-up consult with the neurologist. Not sure he is understanding what I am telling him.* (see below) I had abnormal reflex testing (in his rooms) but he did not comment on what that could mean.
He has told me that the MRI is not normal and very different to the one done in 2008. He also said that they should have done sagittal FLAIR as well. I am now booked for that ....... to be done in three weeks. He is sending me off to have ENG, EOG and Caloric test. I have looked these up and they all seem to be testing balance etc. I will also have an EEG in his rooms.
My eye problem that had started this all off is continuing. I have blurred vision and discomfort in my right eye. Light is particularly irritating and I have some pain in the back of my eye. I am concerned that I should be having some sort of treatment for this if it is optic neuritis. I will see my general practitioner again tomorrow re this.
My husband tells me that the myoclonic jerking of my legs and abdomen whilst asleep has been a lot worse lately.
The generalised stiffness and muscle pains have been around for ever and I just accept that now. I think my long standing degenerative disc disease (DDD) and central canal stenosis may have been blamed (by doctors and by myself) for a lot of my discomfort and symptoms over the years.
I will undertake all these tests and let you know of the outcome.
Patricia
* I am a medical secretary and have actually worked for my neurologist as a relief secretary at times over the past 6 years. When I went to see him about my eye
about 2 months ago he wanted my advice on getting a medical accounting package.......!!!
Maybe I am a bit too close to him.
Thanks for taking time to answer my query. I realise that there is not a lot that anyone else can say specifically re the result of my MRI...... I was hoping something on it might just stand out to someone.
I see my neurologist in two weeks time. I will wait for that appointment and perhaps if I get a little stressed I may see my general practitioner in the meantime. Thanks again. P
AussieP,
Your MRI results do not sound specific to MS to me. But, bear in mind not all MSers lesions follow the general rule.
I think you can expect your doctor to use your history of migraines, viral, and lumbar compression in his investigation to what can be going on, and causing the balance and gait issues. Ask about what you are experiencing while laying down and what could be the cause. And, the vision loss is concerning, and it's something I would definitely put on my "ask" list for the follow-up appt.
No one here is going to be able to pinpoint what the MRIs mean clinically, and in relation to the doctor's physical exam. But I sure hope we can be here for you and help you get prepped for your appointment. When do you go?
-Shell