lost and confused

[sickofbeingsickugh]

I have been dizzy for 3 months. My pcp sent me to an ent to check my ears. Ears are fine. Sent me for a brain mri which showed scattered white mass lesions. Sent me to a neurologist. He said im a working diagnosis but is treating me for a migraine disorder. The medication has stopped my hand tremors, but all other symptoms remain. I am dizzy, light headed most of the time. My arms feel like jello. Mainly in the left arm, but occasionally the right. My left eye is blurry alot. After starting this medication I have headaches almost daily.  Sometimes I see squiggles in my vision. I am tired. Not from not sleeping, but so exhausted daily I dont want to get out of bed or cook dinner. I have a random pain that starts where my gaullbladder used to be then raidiates all the way around to my back. It usually lasts 10 minutes then stops. Sometimes happens just once a week, sometimes 2-3 times in one day. I see the neurologist again in 3 weeks. Im hoping for a yes or no to ms, but not sure if that will happen. Are there more tests that can be done to rule out/diagnose ms? Does it ususally take a long time to figure out the cause? I am so tired or being sick and tired. Its affecting my daily life.

[sickofbeingsickugh]

I have been writing down anything I feel every day. Im hoping that will be helpful to the neurologist.  I have weird things from time to time. Alot of times my left arm feels weak and tired. The unknown is the scary part. Often times I feel like Im going to die at any moment. The impending doom is a scary feeling.  I dont go anywhere alone for the most part and I never travel outside of my city just in case something happens. Is that weird? Ive had these odd pains that start under my right rib cage and it radiates all the way around into my chest and back. It usually lasts 5-10 minutes and then goes away. Ive had that for years. I had my gaullbladder removed 2 years agoas they thought that was the problem but I still have them. Sometimes itll happen just one time in a week, sometiemes it happens 3-4 times in a day. Does anyone else experience this?

[aspen2]

I'm so glad your problems cleared up!  Make sure to keep good records of symptoms just in case more oddness shows up down the road.

[sickofbeingsickugh]

Just an update. After 3.5 months my dizziness is gone! That was rough. The medicine the neurologist gave me caused me to have alot of pressure in my head and chest pain. So much so that I saw a cardiologist. He sent me for a ct angiogram, came back normal. I stopped taking the medicine and all the new problems went away. About a week later, I finally wasnt dizzy!! My hands still shake sometimes throughout the day but I would rather deal with that then the side effects of the medicine. I am having a sleep study done in 2 weeks to rule out sleep apnea. I see the neurologist again next week. I am so thankful the dizziness has went away. I was having problems with my left eye being blurry and that is gone as well. :) I am still fatigued daily. I experienced leg muscles that hurt so bad it was hard to walk for a few days last week. Im assuming I pulled a muscle since the pain came and went in a period of 3 days. Hopefully this dizziness will remain gone for a long time. For those of you who arent dizzy on a daily basis, be thankful! Its the small things we take for granted. Ill update again soon. Hope all of you are doing well!

[suspiciouscombo]

Hugs to you :-}

[sickofbeingsickugh]

Thank you for all the kind words and help!

[essdipity]

VNGs are administered by ENT doctors, and test the vestibular system. With luck they'll show whether or not the problem is in the central nervous system.

[sickofbeingsickugh]

I will definitely google vng testing. You are so right about the world becoming smaller!! I ran a few errands today and felt horrible before I made it home. My pcp doesnt seem to be of much help so Im hoping the neurologist will listen and try to help me. Ive been on the medicine he prescribed me for 3 weeks and other than the hand tremors, I still have all the problems. Maybe he will get me in this week and try something else. I think its making me depressed bc I cant do the things I want to. It is so hard living every day with problems. I want to feel normal again. I have made a list daily of what my problems are so hopefully that will help him figure me out. Im glad I ran across this forum so I can talk with people who understand .

[4happygnomes]

I went thru VRT-PT to try to retrain my brain.  It helped ...a little.  I do a lot of "wall walking" when I'm in the house, can't go shopping without a cart (and can't last long when I do) and have to hold my children's hands when I am out and about.  My world has gotten "smaller"...I just am not as active as I used to be...and I was REALLY active before all this!  

A VNG  is a series of tests to see how the eyes, brain and  ear are working together with the information they are receiving in order to maintain balance.  If you google it, you'll get a better understanding of what it entails.  I would definitely ask for the test.  I'm not on any medication for it, because the damage is permanent and medicine will not fix the problem.  

It would be nice if the symptoms understood that we are trying to live a full life with jobs and kids...and just disappear so we can return to normal.  

[4happygnomes]

This is a great place to come to vent and ask questions...lots of understanding and empathetic  people who are either diagnosised or in limbo.  

I hope the dizziness is able to settle down for you, it is very challenging to function when the world is not steady.  =(

Karen

[sickofbeingsickugh]

What is a vng test? Can I ask the neurologist for that? Ive had my hearing checked and tge brain mri and that is all so far. I think if we could stop the dizziness I could make it. Its rough being dizzy all the time. Especially with a 6 year old and a full time job. How do you deal with the diziness? Ive been on meclizine for months but it has stopped working.

[sickofbeingsickugh]

Its so hard waiting to figure out what is wrong. I just want to feel better. :/ right now I need to go pick my son up but im dizzy and am just too tired. So here I sit. Maybe the next time I see him he can try a different medication? I am going to call tomorrow to see if I can come in before my next scheduled appointment. Thanks for your response. I needed someone to talk to. Just so fustrated with feeling this way. If the dizziness/ faint feeling would ever go away I think I could survive day to day.

[4happygnomes]

For some, it can be a painfully long and frustrating process to get to the bottom of what is going on with you.  I've been in limbo almost  2 years now and will be seeing my 8th neurologist in May.  I totally empathize with the dizziness you are dealing with, I suffer from it as well.  Have you had a VNG test  or evoked potentials done?  That can help determine if there is damage to your vestibular system, which might explain the dizziness. I was found to have a 25% deficit on my left side.   A regular ENT usually can't determine that.  I went to the National Dizzy and Balance center for that testing.

Another suggestion would be to see a neuro opthamologist if you continue to have vision problems.  

I'm sorry you are dealing with so many symptoms, 3 weeks can seem like a lifetime to wait for answers when you are dealing with so much.  Hang in there!  

Karen

[HVAC]

I hear your frustration.

I can take years to get a MS diagnosis. Usually they do MRI and follow up in 3 to 6 months with another. They do a lot of blood work. The most important part of the exam is the neurological exam. That is reflexes and such. If you have a neurological deficit on one side it points more to MS. MS symptoms do not come and go. They last weeks or months. Sometimes they do a lumbar puncture if they are trying to find MS.

MY first MRI showed MS. I had something called Dawson's fingers. It took two more years to be diagnosed. I saw 3 neurologists. One left the area and said it was MS. The second said no. The third said yes in a year and a half. My LP got me diagnosis.

MS is mostly a diagnosis of excluding all other possibilities that is why there are so many blood tests. Even after my LP I had more blood tests.

Neurologists are slow. They like to see changes for themselves.They do not explain things. It is not MS until they decide it is MS.

Alex