What is happening to me?

[kricklekrin]

In 2004 I lost my eyesight for about 1 minute each time.  Then came the on and off again fatigue.  The kind of fatigue not helped with adequate sleep and rest.  Folding clothes felt like shoveling wet dirt.  Then the ongoing dizziness/vertigo.  Traveling pain since then, and now more recently seizure type episodes.  A constant feeling of being disoriented.  I can hardly stand the dizziness/vertigo almost daily.  Pins and needles in my feet and if not this, they feel like they are vibrating.  On and off again internal tremors.  It feels like a train may be coming and the ground is moving.  Now when I put my feet down to step, I think they are on the floor, but they are not.  I nearly miss my step and stumble.  The muscle spasms/cramps in my buttocks and legs sometimes sends me to my knees.  My torso felt like a boa was wrapped around it for about 2 months previously.  I had an MRI Sep. 09 with one lesion and Chiari Malformation.  December 09, another MRI with more than 3 lesions noted.  I'm not getting answers from the medical community after $50,000 in medical costs in a calendar year.  Apparently my Chiari is asymptomatic (wish they could be me for a week).  I read in some ER doctor notes possible MS.  The Chiari may be the cause of some of these symptoms, but I'm sure Chiari does not cause lesions on the brain.  I do have history of Migraine with Aura.  I have not had an issue with these in years, but recently during the seizure/episodes I was thought to be having TIA's.  My Neuro believe it is all Migraine related.  Hemiplegic Migraine (resembles stroke).  I would get this horrible sharp pain in side of head and then one side of my body went numb.  The only head pain was just for those few seconds.  I do suspect that the history of headaches is from the Chiari.  I also have episodes of being off balance, almost like I've had too much to drink.  Why can't I get a straight anwere???

[RedFlame]

I'm so sorry to hear what you are going through!  You have come to right place though to for ideas, support, help and community.  

I noticed that you are in the UP.  Is there any possibility to come down south to see docs who specialize in MS?  University of Michigan is good but the wait time is really long, I don't know about Michigan State.  

I also have the Chiari Malformation, slight cervical myelopathy and periventricular lesions.  I don't understand much about it because my results were never given or explained to me.  I actually called the hospital and picked up my own report.

My point is that there has to be somewhere in MI with docs who care and will work on your case.  Do you have a different doctor perhaps like a rheumatologist who can give you a different referral?

As far as the Chiari and the spinal tap---I have decided that I am going to take the risk if I am asked to have one.  Do you know how far the tonsills have descended.  

Hang in there and please join us in the limboland as well.  We are in the same place as you as far as non-diagnosis or conflicting diagnoses.  

take care

[kricklekrin]

Sorry it took so long to answer.  Dr. Heffez had me wear a neck collar for 4-weeks.  Just to see if this helped any of my symptoms.  It did seem to help with alleviating the pressure I was feeling in my head and the discomfort in my neck and shoulder, but I can't live with one of these things on.  

I just contacted him again to let him know of my current symptoms.  I'm waiting to here from his staff.  My most annoying symptom at this time is the dizziness and every day toe and foot tingling or numb.  This is a constant reminder there is something wrong.

Thank you for your responses, take care.  Kristel

[Wobbly]

sorry your having such a horrible time with Dr and getting some answers.  This can happen alot when you have symptoms that could be so many different Dx.  I wish I could help with answers for you too but??

from what I find with MS fatigue, is that you may want to do something, but your body is just to exhausted to get up and do anything, even talk at times.

that's my impression of it..

hope you get answers soon and take care friend
wobbly

[sllowe]

kricklekrin,

Oh my goodness, this is a dilemma. What did the neurosurgeion/specialist in WI recommend as a course of action?

-shell

[kricklekrin]

Hello,
I hated to bring up the money issue, but I'm glad someone else feels my pain...

Thank you for the encouragement, I will continue to work on and solve the puzzle.  I do realize these doctors are human and sometimes they don't have all the answers, but I want them to because I can't figure it out and someone needs to!

What does MS fatigue feel like?  If you don't mind me asking.  

I forgot to mention, my head goes numb, feels like it's buzzing.  Very strange and disturbing sensation.  Has anyone experienced this?

[kricklekrin]

Thank you for your response.  I'll have to investigate Chiari and lesions.  I have been to the Wisconsin Chiari Center.  I had a specialized MRI done and met with the Neurosurgeon.  He actually showed me my MRI on his laptop and said my vertebral artery is denting my medulla.  From tonsils crowding.  

He also said a lot of my symptoms may be from cervical myelopathy.  I had those results sent to my local Neuro who says I don't have a Chiari issue or Cervical Myelopathy.  I don't know who to believe???  

I have to say, the dizzy/vertigo and feeling disoriented most of the time is really taking it's toll.  I'm very outgoing, and now I'm afraid to drive with these symptoms.  I really have to concentrate.    

[Ufrustrated2]

>> It seems that you have to go through a lot of money and doctors to find one that shows a true interest in your symptoms and a determination to help discover the cause of symptoms.  They never fail to cash my check, but they fail to answer my questions and concerns and take me seriously.  

that is an understatement!

Welcome to our most helpful forum. Neurological issues are quite the puzzle for doctors and patients.

Here's to you and others in hopes you find a doctor willing and able to put the puzzle together that actually helps.

[sllowe]

HI there,

Welcome!

I'm no so sure about the chiari not causing lesions, but from what I understand they can cause the syrinx. Both come with a whole lot of symptoms to include weakness, numbness, vertigo and/or dizzy, tingling.

You mention a lot of money invested in this, so I hate to even ask, but is there any possibility you can see a neurosurgeon? Bring your MRIs, etc. For a 2nd opinion?

I'm so sorry you've not received the help you need - but very glad you found us and I hope we can be of some help to you.
-Shelly

[kricklekrin]

Thank you for your response.  I will make sure to break up my writing into smaller paragraphs!  

There is power in praying, and I find this is the only thing that gets me through many of my symptoms.  

I have had many test to rule out other reasons for my symptoms.  Avoiding a Lumbar puncture because I have Chiari, and it can make this worse.  My family doctor was the first one to mention possible MS and ordered my first MRI.  

My last visit to my Neurologist felt like he didn't have time for me.  It seems that you have to go through a lot of money and doctors to find one that shows a true interest in your symptoms and a determination to help discover the cause of symptoms.  They never fail to cash my check, but they fail to answer my questions and concerns and take me seriously.  

I'm typically a very upbeat and positive person, but the experiences I've had with doctors and hospitals this past year leaves me with a lack of confidence in the medical community.  

If I have MS, I want to accept it, and move on.  The doctors I've seen can't seem to get on the same page.  They all have the same test results, with different opinions.

Can anyone tell me if the weather (low pressure) make symptoms of MS worse?  It seems like when It's going to rain or storm my dizziness and tingling in feet get worse.  I don't have a headache with this weather, otherwise I may think it's migraine related.  

Counting my blessings!



  

[PastorDan]

Straight answers are very hard to come by, I'm afraid, when it comes to many neurological maladies.

Have you been screened for MS mimics?  Have you had a lumbar puncture?  If not, talk to your neurologist about these questions.

I'm no neurologist, but what you describe sounds like MS, migraine, stroke, TIA, and/or a list of other stuff.

The number of lesions alone, nor their size and location, would be sufficient to determine which of many problems you may be experiencing, unless numerous other tests are performed and the results analyzed by a trained professional with an open mind.

Having said all of that, welcome to our little corner of the world.  You'll find folks here to be very knowledgeable and understanding, and even fun from time to time.  Browse our "Health Pages" section (accessed via the teeny yellow icon at the upper right of this page) for a broad swath of information regarding the issues you're facing.

One request: break up your writing into smaller paragraphs.  Many of us have vision issues, and those big blocks of text just run together too much, becoming very difficult to read very quickly.

I will pray that you find the answers that will give you peace and power.  Thanks for coming by, & don't be a stranger.