Hello.. new here, and to all of this..

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Hello.. new here, and to all of this..

Postby Pandora » Thu Apr 21, 2011 11:57 am


I am new here and working on trying to find a definitive answer to what is plaguing me. I will start with a couple of relevant pieces of information, so as to be clear… I apologize in advance for the length, and thank you so kindly if you have the time to read.

In 2005 I had weight loss surgery, I have had vitamin complications since having 2 pregnancies back to back, having babies in 2008 & 2009. All of my B vitamins are currently good, as is my iron. My problem vitamins are my fat soluables – ADEK. My thyroid is fine. My D vitamins are getting up there and close to normal, I continue working on them and will have my blood rechecked in a couple of weeks. I take 50,000 IU of dry vitamin D daily. My magnesium levels are good. My Zinc is low normal – it is 64 with normal range being 60 to 130. I don’t know levels of uric acid, I don’t think they were on my lab slip? (labs done by my endocrinologist) I also take calcium supplements and magnesium, zinc separately. Actually, I take 19 separate high dose vitamin pills daily. So, lets just say I should have the vitamin route covered. (though I am wondering what the notations of D and MS have to do with one another, since I HAVE been low on D for some time. But am actively working on getting these in check).

I also have a sinus issue that is going to require surgery to clear, this has given me a chronic headache for 2 ½ months.

I had an MRI yesterday, I wont know anything about the results of it until tomorrow.

Symptoms.. Um I am sort of a mess:

My hands and arms are very numb, mostly on the right side. My face is numb, and twitches sometimes (eye, nose, mouth.. heck I had an “Elvis” lip twitch going on Friday). I have pain in my arms with the numbness, the pain is sometimes worse than others. My muscles are exceedingly weak. Especially my right side.. they also feel “tight” like they are swollen, it’s weird to describe since they don’t appear to be swollen, just don’t move as freely as normal.

I am having memory problems, and difficulty concentrating. I honestly feel like I am heavily sedated without actually BEING heavily sedated.. I can’t remember words that I use all the time, it takes me a few to reach for them.. sometimes I just can’t even get them. It’s like I KNOW they’re there, but I cannot find them. I forget the dumbest things quickly, like look at a recipe and go to grab an ingredient, forget, go back to recipe to figure out what I need and repeat.

I feel like I am sort of out of myself.. my skin being numb does NOT Help this feeling. Oh yeah, my feet periodically get numb too.

I am having some issues with my vision… I had a day where my eyes hurt to look around, it felt like looking anywhere other than straight was pulling at my brain, it hurt. And was annoying. Since then I feel like I have a “film” over my right eye.. I can see through it, but it’s annoying. I had this problem again, and I have a small spot on my left eye that seems like my right. An annoying thing in my vision that I can see through, but is enough to annoy me. I have an appt with the Eye Dr. Tomorrow.

As things progress, for the past 4 days or so my speech has become slurred, and I sound drunk – despite that I don’t drink. It is also somewhat difficult to swallow, seems like my food/vitamins gets stuck.

I am periodically dizzy, and my limbs feel heavy.. like they almost aren’t a part of me and I shouldn’t be carrying them around.

I am so tired in the afternoons it’s somewhat absurd. Usually in the mornings I am ok, but that is probably because I am sleeping like the dead! I am just so tired. That’s not like me, I tend to be more insomniac than anything.

I think that’s about it… like I said, memory problems. I have to keep a list, because I honestly cannot remember a lot of it.

My fine motor skills with my hands aren’t doing as well either.. I normally type 90+ words per minute with great accuracy, well not right now.. I make a lot of mistakes and have to backspace.. my right hand just doesn’t work so well right now. I can’t generally open water bottles or anything either.

In 2008 I was off work for 4 months with “Carpal Tunnel and Tendonitis” for the SAME feelings I am having in my arms. The extreme muscle weakness and pain that goes with it, that cannot be alleviated by ibuprofen etc. Though it’s not as bad this time, and the pain isn’t as bad this time. I had a carpal tunnel nerve test which was completely clear, but the Dr didn’t have another explanation for the trouble and extreme noted weakness in my hands (more my right than left), so he said it was carpal tunnel anyways. Now I wonder. It was workmans comp, so they didn’t really have cause for an MRI. And I didn’t have the obvious neurological problems I have now.

I am feeling frustrated, since I have issues but unsure of the diagnosis. MS seems to fit, but my Dr keeps telling me he thinks it’s all stress. And my face numb & twitch issues are because of my sinuses, which my ear nose and throat Dr said NO, that is not my sinuses (I have to have surgery on those). The only symptom I have that is from my sinuses is my chronic headache.

I see my dr tomorrow to find out what the MRI says, and will ask him for a referral to the neurologist. I asked for the MRI.
User avatar
Posts: 2
Joined: Wed Apr 20, 2011 3:00 pm


Postby jimmylegs » Thu Apr 21, 2011 1:04 pm

welcome to the forum, pandora.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
Volunteer Moderator
Posts: 11114
Joined: Sat Mar 11, 2006 4:00 pm

Postby Pandora » Fri Apr 29, 2011 1:10 pm

Hi, and thanks!

I had an MRI without contrast. It was clear for lesions. I DO have a Pineal Cyst measuring 8 x 11 x 9 MM. This is causing slight pressure to a the superior colliculus.

I have been referred to a neurosurgeon (whom I know personally).. he looked at my MRI and said not to worry and we'll go over it when I come in (on the 10th of May). After looking up the potential symptoms of the cyst, some of them cross over - but not all of them. I would be relieved to know this was causing ALL of my problems, unfortunately it isn't.

However, it could be causing the headaches, nausea, lethargy and altered mental function, visual problems, it can can cause loss of sensation to half the body, weakness of half the body and intermittent pain. Invasion of the hypothalamus may cause disturbances in body temperature and water regulation, sleepiness and weight gain. Additional symptoms include memory problems, lack of coordination and tremor.

Some of those listed are if the cyst invades other things in my brain, which it has not - it has been noted to be slightly pressing on the superior colliculus.

My regular MD does not think that the numbness of my face, right side of my body, swallowing difficulties (which are getting more severe, and I am currently living on soup due to the food getting "stuck" in my upper chest - even liquid gets stuck, but it's less uncomfortable).

It does not explain the urinary urgency, and inability to stop my urine flow.. or sometimes start it. It does not create the feeling of being disconnected and heavily medicated.. the slurred speech & other speaking difficulties.. Fine motor skill difficulties

It may be all intertwined but I am unsure at this point.

I see the Neurologist on May 5. I am hoping for some direction.

Since my MRI is negative for lesions, there is a notation on the MRI report that they want an MRI with contrast to rule out lesions.

So, I have a direction and will be actively pursuing it. It'll be interesting to see how this turns out.. on some level it would be nice if the cyst is causing ALL of my problems. Even though brain surgery does NOT sound ideal to me.. neither does MS obviously. But the doctor seems to think it goes beyond the cyst. We'll see what the neurologist and neurosurgeon have to say.

Thanks everyone.
User avatar
Posts: 2
Joined: Wed Apr 20, 2011 3:00 pm


Postby leetz » Fri Apr 29, 2011 9:30 pm

I think maybe just think the best...if it can be treated then consider this...believe me there is alot of us here that would love to have just SOME symptom relief...so if it is treatable congrat's...take it as a blessing...I am praying for all of us with this horrible disease and other's...

God bless you and please keep us updated :)
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
User avatar
Family Elder
Posts: 301
Joined: Tue Oct 06, 2009 3:00 pm

Return to General Discussion

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service