Not Yet Diagnosed

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Not Yet Diagnosed

Postby JamiLea » Sun Mar 21, 2010 7:22 am

This is going to be long so bare with me. It's the first time I've told my story. Thank you to those of you who read and reply. I look forward to becoming a part of what seems like it is a good support team. God bless!

I have had MS symptoms in the past but very minimal. A couple of years ago, I experienced stabbing headaches for only 2 days in a row. They would come on so excruciating that I couldn't walk, would last for about a minute long each all day long.

Then, nothing really except for spastic muscles and twitching and some other minimal symptoms.

A couple of months ago, stabbing pain in the back of my head near my neck, L side, paralysis feeling L side, slurred speech, memory loss. Then, I got my first MRI. 2, T2 bright white matter lesions found on the L frontal lobe, one in the subcortical and the other in the semiole centrum valley (don't know how to spell it right). I was really afraid of the memory loss because I have such a great memory. And the slurred speech because I'm a very articulate person. The nurse practitioner came back and said the radiologist said there is an early onset of MS.

Then, they came back and said nevermind, they had a neurologist who was at home take a look at my MRI and said he is for sure it isn't MS and diagnosed me with a common headache. In the state of Maryland where I live, all doctors can put your social security number into a computer and pull up your MRI reports, etc. So, I went to another neurologist who told me that because I didn't have health insurance, no further tests would be done. He told me that he saw the report the other neurologist made in my chart and since the lesions aren't located in the ventricles, they are sure I don't have MS.

I have found out since then that none of them followed a diagnostic criteria. None of them asked for my medical history and they all thought I was making up stories based on what the nurse practitioner said at the hospital. Anyways, I don't need anyone to tell me something is wrong. All of my symptoms progressed to debilitating levels since that attack a couple of months ago. I am convinced that I would have never known what was going on if that nurse had not (against her job) told me what the radiologist said. The MRI would have never happened if it weren't for her. She was awesome and almost got into trouble because she went against the advice of the neurologist. An angel was watching over me that day. I am sure of it. I have been living with symptoms that I just passed off as "normal" because I'm not much of a complainer.

I get up almost 5 times a night to urinate,

weakness on my L side,

my L upper arm has been numb for a week,

I'm getting headaches now more than I ever have in my life,

stabbing pains in my throat, hands, fingers, arms, thighs, hips, calves, feet, toes, mons pubis, sternum, rib cage

I experience twitching in random places while at rest,


my legs locked up and wouldn't allow me to walk a week ago. My husband had to carry me up the stairs.

My L side grows weak a lot and numb. I have to compensate with my R side just to get through the day.

Weakness in my body

I've had trouble swallowing for several days now.

Cognitive functioning is deteriorating, forgetting to do simple tasks,
slurring speech, stuttering words, not being able to find the right words and pausing right in the middle of saying something not being able to remember what I was saying. Not understanding when someone is telling me something and having to read things 2 and 3 times to comprehend it. Like I said, this is way out of character for me. It frustrates me very very much because I've always been gifted in these areas. I am even forgetting how to add simple math problems. I am trying my best to keep stress down since this seems to magnify this problem when I'm really stressed. The stress comes from all of these symptoms!

Balance problems, running into walls, falling over my feet and missing my chair.

Dizziness with blurred vision

Sore eyes, sensitivity to light, blurred vision, eye skipping while focusing on something.

Heat and cold intolerance

Electric shock sensation in my spine, need to twitch my body

Tingling of limbs


Choking on food

Bowel changes (constipation, clumpy to soft and runny)

Ear problems (tinnitus, random pain)

Extreme fatigue every day with limb heaviness

Sometimes crazy itching in my L ear and eye.

The spastic muscles are so exhausting. I have good muscle tone though haha :( I just can't relax because they are constantly contracting and it really wears me out!

I wake up with only a few little symptoms in the mornings and everything starts progressing as the day does. When I get 8 hours sleep and under, I have a feel good window from 5:30am-2,3 or 4pm. If I get 10-14 hours of sleep, I have a feel good window from 5:30am-5,6 or 7pm.

I have learned to drink a lot of water and juices in the morning and cut them off by noon or 1pm. This has helped me immensely to not get up so many times at night. I have also been taking 500mg tylenols, 2 at a time and valerian root for relaxation throughout the day. Heating blanket wrapped around my body at night helps me sleep better. Frequent hot baths, even though they make me weak are worth it for the 20 minutes that I am out of pain afterwards.

I am holding a job and a marriage through all of this. I amazingly got a $2 per hour raise at work and I get health benefits in 90 days. So hopefully I will get a diagnosis soon. Most of the symptoms start when I am at rest and some when I'm active but I just keep moving. It's literally like something is trying to get me to stop moving so I just keep going because I'm afraid. I rest as much as I can but when it becomes unbearable, I start trying to move around even if it's painful

I have pretty much accepted the fact that I have some illness. I tell myself every day that it is MS. I will tell myself that until someone who actually follows criteria and receives my medical history (MS specialist) tells me otherwise. I only know a few women who have MS that can not believe I have these symptoms because I've known them for years and they say it all makes sense to them now. One is a previous employer of mine. She fired me because I was failing at being a productive employee after awhile. LOL! They are all there for me supporting me through this but I figure I should come to a bigger support group.

I cry a lot because I don't want to be sick and am trying my best not to allow depression to set in. I try my best to manage the symptoms without proper treatment and am waiting patiently for health insurance. Like I said, I have to tell myself that I am sick daily and that it probably wont go away so I have to learn to live with it. That is the only way I can get through each day. Thankfully, I have a husband who has an autoimmune disease called Grave's so he is very very supportive of me.

I look forward to just seeing similar stories and knowing that I'm not alone. I'm sure there are people out there with much more debilitating diseases than mine so I figure for my own mental health sake, I will need to learn as much as I can and be around others who have it worse.

Right now, I keep an excel spreadsheet. Every single day, I log what I eat and what symptoms I experience. I don't put down every little symptom because I'm aware the mind can do weird stuff :) However, I do log the patterns that I observe.

I know this is going to possibly be a long journey. I'm not sure I'm prepared for it yet but I'm going to fight for it. Many nights, I've prayed for it to be "just all in my head and I'm making it up and if I just keep telling myself that long enough, then it will go away" That has not worked so far :( *tear*
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Postby lyndacarol » Sun Mar 21, 2010 10:41 am

JamiLea -- You have SO much going for you!

Your symptoms could very well indicate MS. You are smart to keep a log of symptoms, diet, any event of possible relevance. It is a good idea to read, read, read -- educate yourself on MS. There is PLENTY to find on this website. Take a look at the Reading Nook for starters.

1.Find a team of doctors you feel comfortable with -- start with a compassionate internist or GP.

2.Always ask for your own copy of test results and keep your own file.

3.Begin at the beginning -- establish your baseline position with a thorough physical exam and a thorough battery of blood tests -- insulin level, as well as glucose; cortisol; thyroid hormones too.

Welcome to our "club." We will try to be supportive; you will be a great asset here. Most of us believe that answers for MS will be coming soon
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Postby stillfighting » Fri Sep 17, 2010 7:45 pm

The diagnosis part can be the hardest time that many of us go through.
It can go on for a long time.
The MRI usually puts it in order, but is no garantee that anyone will agree on it.

Not having insurance it's going to be hard to get a lot of the blood test and things. That may or may not be relevant to the mri..
One thing you can do is
1. Get a copy of all of your records from all of the dr's you have seen.
This includes the test and office calls.

There can be a mountain of info in there. You would be shocked to know what they will tell you that they won't put in writing..........that will make you look like a butt when you repeat it to another dr..
Also they may or may not tell you what are in the test results.

Many times very simple lab work.. can be like a blood hound leading a dr in a direction he needs to go or not.
But, MS shows nothing on blood work.
It usually will show up in a spinal tap... which is not done very much today with the mri.

You sound like a very strong person to be making it through all of this and it sounds like you have a great support system ( partner)

Sometimes all we need is a little time and some determination to weather a storm............
Best of luck to you.
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