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3 years and no diagnosis...

PostPosted: August 6th, 2014, 2:35 am
by Nuti

I was reading the forum for some time and since I cannot stop worrying about possible MS (ALS fear is quite managed) because I have no clear brain MRI. So I decided to share my story. I am 34 year old male.

1. About three years ago I noticed that from time to time my middle finger was twitching (shorty before I also had both feet pain in the morning), however it did not concerned me.
2. Three months later my anxiety greatly increased because I had noticed that my pupils are not exactly equal in dim light (I think the difference is about 1 mm). Then I got MRI of the head and cervical spine and CT of upper chest. MRI of the head showed one small periventricular hyperintense lesion, nonspecific, probably ischemic. So my MRI was not clear. But the neuro said no to MS.
3. Two years ago some back pain - cervical and thoracic MRI almost clear, in thoracic area some disc bulging. My health anxiety was pretty bad than.
4. 1.5 year ago - developed some low level tinnitus, a month later my hands started falling asleep during night (pink and ring finger) and I developed whole body fasciculations (more on the left side of the body - left calf is the worst).

Then I was admitted to hospital for evaluation. Visual evoked potentials - clear. NCV of arms - clear. Lumbar puncture - slightly increased total protein - same oligoclonal bands in blood and serum - so it is not specific to MS (negative), but something is happening in my body. Also slightly elevated cholesterol and liver enzyme. MRI of the head with contrast - two small periventricular hyperintense lesions, nonspecific, probably ischemic (comparing to old films, I had two lesions from the begining). And a lot of blood tests which came clear (but CK 220). So at this point they said I had no MS. Also had clean EMG (only fasciculations potentials)- the neuro said it can be BFS.

5. And lastly, high increase in eye floaters which are very disturbing.

So at this point I have:

1. Anisocoria in dim light.
2. Whole body twitching, but mostly in calves, left especially, eyelid.
3. Some buzzing feeling.
4. Hands easily falling asleep in night.
5. Low level ear ringing.
6. Large increase in eye floaters (cobwebs, spots - some I had since I remember but they were not gray).
7. Tight muscles in neck, maybe some TMJ, also very tight calves.
8. Lip tremor when smiling ("half smile tremor").
9. Tongue quivering when sticking out.

I fear MS, since my MRI is not clear. But I had it last month for the third time and I still have only those two lesions. The radiologist and neuro said that the MRI is static and the lesions are ischemic.

best regards, I would be very grateful for any input since I have problems with managing my anxiety. And sorry for my language, I am not a native speaker :D

Re: 3 years and no diagnosis...

PostPosted: August 9th, 2014, 7:55 pm
by Nytviolet
Sounds like you have great doctors who ordered a very thorough work up. Although I doubt you have ms, a large percentage of ms patients have a fairly benign course and live normal happy lives. There are many cases of people dying at 80-90 years of age of natural causes, and autopsy shows they had ms for 40 years and did not know it! I guess my point is that most your tests were good, and after all this time (even if u did have ms) it would probably be a very benign course. People live with ms, they rarely die from it. Also, it was not said that the two small white areas were ms plaques. I hope you're feeling well--that is what matters. Hugs

Re: 3 years and no diagnosis...

PostPosted: August 10th, 2014, 12:11 am
by muppetdog
Hey man,

I just thought I would comment. I probably wont be of any help, but I have most of those symptoms you described.

Eye floaters - Had some before but now I have a ton. I am 36 now and they really started to show up pretty intense at 35. It kind of started with small pin point flashes of light in my vision every once in a while. I still will get a tiny flash here and there but not as much as before. I am not sure if I had some sort of posterior vitreous detachment or what - I guess everyone does eventually. Anyhoo, now I have about 20 dark, stringy, crazy looking floaters in my right eye; even to the point where I can see them in low light. I have one I call the comet and another I call the lizard, although he looks more like a badminton birdie;I have yet to name them all. I also have this really long stringy one in my left eye that spans my whole vision. It is really crappy to read with because it looks like a giant hair moving around in front of my book or computer screen. Fun stuff

My arms go numb all the time and wake me up from sleep. I have to find just the right position. I have a lot of stuff that goes numb under different circumstances.

I get buzzing all the time, mostly in my feet and legs, though sometime it shows up in random patches on my body and feels like a cell phone going off. I think a lot of people get this on this board. Some one back me up here :)

I don't have ringing but I do have a low-level hiss in both ears. I contribute this to my guitar ROCKIN days and my involvement in aviation. I have met a ton of people with ringing and hissing and clicking - oh I also get clicking in my ears - but I think our society is just too noisy for our own good now a days.

I did have tight muscles all over and still do in different places at different times. Stretching helps for me and enough sleep.

This lip tremor thing.... Ha! that's great!!! I also get that. When I am drinking out of a cup sometimes I can feel it shake, or if I have to pucker for some reason. who knows about that one.

I think everyone's tongue quivers when you stick it out. Try it on your friends, theirs will all quiver.

Okay, so I know I just made on of those "me too" posts that really are not that helpful. But, I just wanted you to know that other people get that stuff.

Oh, and all the twitching. Seriously, name a place on the human body and I can tell you about how I have twitched there. Fun....Stuff... :)

Do you get much burning or paresthesia? I get a ton of that along with a lot of generalized fatigue to the point of debilitation sometimes. I have had all the MRI, EMG and a MASSIVE amount of other tests and all they came up with was small fiber neuropathy.

I would trust your doctors. There are things other than MS that can cause what is going on with you, maybe nothing they will ever put their finger on specifically, and I know that not having a diagnosis is hard to deal with, but you kind of have to take it a day at a time :)

Another Oh, what is an ischemic brain lesion? Just out of curiosity? Did your DR say what caused them?

Feel free to PM me if you want to chat or compare notes. I am coming up on my 3 year mark also.


Re: 3 years and no diagnosis...

PostPosted: August 10th, 2014, 2:40 am
by Pascal35
Hi Nuti,

Our stories have similarities. My fear also started with MS as i also had 2 white matter non specific lesions which remained the same since they were found. (4 years ago). Very small UBOs that i was told that many many people got them so its quite normal since there is no change.
At any case during my stressful period of MS research with Doctors and MRI's my right bicep started to twitch. That was 9 months ago and since then I'm into a huge ALS panic (you can read several of my previous posts to understand).
I don't believe you got MS as you made all the necessary tests. In addition those lesions remain the same so there is nothing to worry.
All the best

Re: 3 years and no diagnosis...

PostPosted: August 11th, 2014, 7:00 am
by Nuti
Thanks for your replies !

My anxiety was pretty well managed lately but this onset of the floaters is very disturbing. Now I feel a little better but I see them all the time except for the night.

Ischemic brain lesion is made when small blood vessel closes for some reason. I have read that they are pretty common in elderly adults and considered as a part of normal brain aging. However they are not common in young adults, but as Pascal said sometimes they are found incidentally and their origin is unknown - they are called UBOs (Unidentified Bright Objects).

best regards !

Re: 3 years and no diagnosis...

PostPosted: August 11th, 2014, 11:05 am
by J4son
Nuti wrote:Thanks for your replies !

My anxiety was pretty well managed lately but this onset of the floaters is very disturbing. Now I feel a little better but I see them all the time except for the night.

It’s been nearly 20 years that I have floaters. In the beginning it was really disturbing. I used to see them all the time except when it was very dark. Now my brain got used to them so 99.9 % of the time I don’t see them at all. But if I focus especially on a blue sky or a white wall I see them very well and they are now many many many times more than what they were 20 years ago. Before I had one or two in each eye, but today they are so many that I can’t even count them. Yet, before I used to see them all the time, and now I can barely see them. Fantastic Brain adaptation :) Floaters are little particles detached from the inner part of the eye and floating in the vitreous humour. Sometimes when they touch the retina it can manifest as a lightning sensation.

Floaters are nothing to fear.

Re: 3 years and no diagnosis...

PostPosted: August 11th, 2014, 6:20 pm
by muppetdog
If you want to know everything about floaters read this:

You don't have to know all the medical terms but can look up ones you are interested in.

Big shadowed floaters classified as "Highly Mobile" don't go way and your brain does not get use to them. The small opaque amoeba like ones that are locked stationary in the vitreous can be "forgotten" by the brain because they induce a constant stimuli, being that they are in the same place all the time relative to the incoming light. Luckily I have the highly mobile ones that will probably be with me the rest of my life. When I look in my left rear-view mirror then back towards the road while I am driving, it's as though a flock of crows just flew through my vision 5 feet from my windshield. Or, they then will form this nasty "heads up display" type constellation, black, ominous and constantly moving in all but the darkest of environments.

I bet most of you that complain of the big bad dark floaters are myopic (near sighted) like I am. I guess that can cause early degradation of the vitreous fluid and the subsequent clumping of collagen fibers (floaters).