Sleepygirl's Story

[sleepygirl_20]

I am a 27yo female.  I am in very good health, but have been dealing with weird symptoms for several years.  Most times when I would bring them up to my family physician, they were disregarded as nothing.  I have always suffered from bouts of extreme tiredness and would receive jokes about being lazy.  Last year, I was diagnosed with Epstein Barr, which explained the fatigue, extreme tiredness, headache that I would experience every 2-3 months.  I have recently experienced the same symptoms, but now I am also experiencing blurred vision and weird muscle jumping(spasms?) and muscle weakness.  The spasms started in my left arm, but have sense progressed to my legs, head, chest, basically everywhere.  I thought they would go away after a few days, but they appear to be getting worse.  I have been to the eye doctor about my vision problem and they cant find where I need glasses, but things are so blurry that I cant make out faces, signs, etc.  The tiredness will get so bad where my eyes feel like they roll back in my head and I have a weird feeling in my head kind of like a spasm, too....I guess.  My calcium level is 10.2 which is on the high side of normal, but over the past year the level has remained at 10 or above.  My potassium level good and my thyroid is normal.  I have been referred to a Neurologist, but my Dr. did not say why.  I have always dealt with the symptoms and the constant jokes, but now I am worried.  

[Johnny Utah]

  Don't worry. MS is not a death sentence. It will change your life, as you already know, but everything changes in life. Just getting old is bad enough. One in 750 gets MS, if a family member has it your chances are about one in 40. If you live in the southern latitudes you are far less likely to have MS.

  You are lucky to have a Dr you like and one that seems concerned. Even though he is leaning towards a diagnosis of MS, don't be surprised if the MRI doesn't show anything significant or the EMG for that matter. It seems par for the course for a lot of people.

  Keep us posted and hang around, education is very important and being able to bounce questions off people that are dealing with very similiar symptoms is helpful. Sometimes they can direct you to ask specific questions you may not have thought of.

  Johnny

[sleepygirl_20]

I had my Neuro appointment today.  I was very comfortable with the Dr, and he seemed to be very caring and concerned.  All of my initial neuro exams (strength, reflexes, balance) were ok.  The balance was a little off, but ok.  Of course the Dr. wanted to see my muscle spasms, and of course they were on good behavior as I had just woken up and had not been very active yet.  He said that my symptoms concern him and if he had to make a diagnosis today based off my presentation his diagnosis would be MS.  We scheduled the MRI and EMG for the up coming weeks and I have an appointment with him in 3 weeks.  I really didn't take this well, I guess because I thought I would be written off once again.  After speaking with my mom and sister, they volunteered some memories that I had forgotten about, and never really thought about as symptoms (My loving sister called me to remind me that about 4-5 years ago, I had threatened to write a letter to Michael J. Fox because my hands were shaking so badly that I could not hold anything.  I started laughing because #1 MJF has Parkinsons, not MS, #2 because I had completely forgotten about the whole situation, and #3 looking back it is really ridiculous and funny).  Also, I found out that I do have family members with MS, however they are cousins and extended family, not immediate family and I am not even sure that there is a family link with MS.  All things said, it is not a diagnosis and I understand this, I am upset at the though of this and the level of his concern, but it is nice to have a Dr. that will finally listen to me.  He gave me a nice little hug before he left and said don't worry, we will take care of it no matter what it is.  So now I begin my wait, and will try my best to not think of it.  

[sleepygirl_20]

My work is ok with it.  I work in the HR department, so the only thing for me is that sometimes I don't remember really important information(hence, the notebooks I keep) and I do a lot of walking.  I can usually tell what kind of day I am going to have by how much walking I have to do.  If I have to do a lot of walking at the beginning of shift, then I just prepare myself for more spasms and muscle tiredness and pain for the rest of the day.  

In working with my timeline, I made a connection that I had not previously thought about.  A lot of members here talk about heat sensitivity, and that is really the only symptom that I never related to.  A post earlier tonight made me have an epiphany...I experienced heat exhaustion during the summer of 03, which was horrible, but didn't require me to go to a doctor or anything.  I have never related the heat sensitivity that I experience to my other symptoms, because I always think about the heat exhaustion and related it to that and just assumed that how I felt when I am out in the heat was because of that.  I have quit laying out in the sun with my girl friends, avoid going to the beach, pool, etc because I don't like how I feel when I get hot.  It is hard to breath, feels like my chest is heavy, my head starts to hurt and I get really tired, I just never thought about it as more than psychological from the heat exhaustion....probably nothing, but interesting.  

The hardest part about the timeline is remembering the years, dates, seasons, etc. when the things have happened, but I am working on it.  I hope to have something better to take with me on Friday.

[Johnny Utah]

  Requesting a copy of your medical records is a great place to start but don't leave out things that happen and you don't go see the doctor. I mean, we all have good and bad days and we don't always see a doctor when we have an issue.  Your time line should include those times as well. Don't worry much about specific days, the month and year is great, if not use the season and year.

  And when you do get your medical records don't be surprised by whats in them or maybe whats not in them. I am curious about where you work and how comfortable you feel within their system. I also work in a manufacturing facility, we make computer chips. I have also shared my concerns with my nurse and will see our doctor next week. I will see him for my annual ERT / Hazmat Technician physical. I might have an uphill battle on my hands because the nurse has already said she thinks when the doctor hears about the symptoms I have been having he will remove me from that duty. I don't feel like it has in anyway impacted that aspect of my job, but because I divulged information to our nurse she does have an obligation to pass it along to the company doctor for my own safety as well as the company's. Her concern was that I not be placed into a position that may put stress on me and cause a flare up. It's funny though, you can spend years trying to get diagnosed and not, and yet everyone around you wants to mitigate issues to keep you from having a flare up for something your doctor says you don't have.

  And Carol, thanks for the very kind words! Believe me I think the same about you.

Johnny

[grannyhotwheels]

Johnny gave you some excellent advice.  Always use dates when possible and put everything in order as they happened.  Our Johnny is a pretty smart guy so listen up!

I would also like to welcome you to our family.  You sound like you are at the right place.  Please keep us posted on what is happening with you and also your neuro. appointment.

I'll be praying,
Carol

[sleepygirl_20]

Wow, thanks for the great response!  This will help me so much!  The GP that I saw didn't tell me why she was sending me to the Neuro, she just said that my symptoms seem to be neurological.  I ended up here due to a couple of reasons, first, at the plant that I work at we have a registered RN and I have been keeping her informed of what is going on.  I went to her first with the vision problems about 2 months ago and she started asking questions.  I never really thought about it and after I told her that I had a neuro appt, she said that she didn't want to scare me but she had been keeping up with what I had been telling her and she wanted to send me some information on MS.  I have used Medhelp for other issues before and that is how I ended up here after reading the info.  I originally posted to the Neurology forum, but never would get a response.  I came into this forum and seen there was a lot of activity and hoped that I might be able to get some help or atleast feel like I am not crazy.

I have had my eyes tested every year for the last 3 years because I have the bouts with the dizzy/fuzzy vision.  My Opt. says there is really no reason that I should need glasses since I have 20/20 vision, but he has given me a very weak prescription to wear when driving at night since I have problems with road signs.  I recently had a physical 3 months ago and they also concluded that I had 20/20.

The memory problems for me is more of a recollection problem.  I can learn information and retain it, I just have problems producing it when needed.  For example, I get in an argument with my bf today, I can not tell you tomorrow what was said if asked.  I can search in my head for a long time and never produce it, but next month, without a request I might be able to tell you.  Another example is in my job I have to have a good knowledge of employment laws, I know them and can recall them sometimes, but more times than not, if there is a request, then it makes it harder to remember for some reason.  I get so frustrated sometimes because I know that I have the knowledge, I just cant make my brain tell me what it is.  I have even decided that if I were to get married I would elope, because I would never remember it anyway.  HA!

I think I will try to sit down and revise my timeline tonight when I get home.  It may take getting my records from my former FCP, but that would help me a lot because I went to him about most of these issues.

[Johnny Utah]

Hi sleepy,

  I don't have any real answers or probably any good advice for you, just thought I'd say hello. Sorry that your not feeling well. How is your sleep? You didn't mention any sleep issues. Have you had an eye test during a time when you are experiencing blurred vision? I have started having some vision issues myself and it seems to be a focus problem.

  You found yourself here for a reason, has anyone mentioned MS as a possible cause? Have you had any testing done like an MRI?

  All I can really say is be your own advocate. As far as your time line goes it seems OK. There are so examples from others here that you can find and use as a template. I think its best to show a progression starting with individual symptoms and going back as far as you can accurately recall. It can make it easier for your neuro to be able to see a history.

Jan 2004 - Extreme fatigue, lasted 3 weeks.

Apr 2004 - Fatigue again.

Feb 2005 - Memory issues. Seems like I can't easily recall events from the recent past. More accurately, I can recall them but not in a timely manner. It has not affected memories from the distant past.

It's just a suggestion. I have found that when I lumped symptoms into a single paragraph there doesn't seem to be any progression and you leave it to the neuro or anyone else to try to figure it out. This is a good example you mention above;

"Fatigue/Tiredness The tiredness comes and goes.  I may be fine for a month, but then I will feel tired and week for 2 or 3 weeks, sometimes longer.  This has been going on for several years, but in the last 4 years I have noticed that it is more frequent and the tiredness is different."

You mention that it has been going on for several years, which is a pretty general statement and my interpretation of several might be completely different than yours. It doesn't show how often it happens even though you mention a frequency of 2-3 weeks. What your describing is not really something that comes and goes but more about a persistent issue.

Things like memory can be 4-5 different things.

-Inattention/reduced span=If you don't register an event you can't recall it.
-Disorganization=lack of structure limits meaningfulness and hence acquisition
-Poor encoding=information does not get in so you can't recall it
-Failed retrieval=forgetting with recognizing
-Failed storage=forgetting without later recognizing

I didn't just pull these from thin air, they were taken from a hand out at a seminar a few weeks back I attended. I have cognitive issues and suffer memory recall problems specific to the last one on the list, failed storage. I have no problem with memory from 10 years ago, but have difficulty recalling things from a few days ago. I my case it is stored, I just have difficulty bring it out on demand. It's like saving something to the hard drive in your computer. Saving it worked fine, however when you go to open it back up you have an read/write error which is caused by whatever is impacting the connections in your brain. There could be a lot of things that caused it, but it is a common MS symptom.

A time line is going to be a work in progress, so take your time, rewrite it as needed, add things that you remember. In a disease like MS, it's important to show a progression of symptoms with dates.

Good luck at your neuro appointment.

Johnny

[sleepygirl_20]

2nd post today of my list I am taking with me to my neuro appointment.

I put together a list of my symptoms and tried to include a timeline within them. Will someone please look at this and tell me what you think....if I should add anything or take away.  I am having the spasms more frequently which is leading to more tiredness so I really want to present this to my neuro in a way that he will be interested in helping me figure out what is wrong.  Anyway, thanks in advance!  

Detail of symptoms
Muscle spasms My muscle spasms(jumps) started about 3 weeks ago around September 23.  They began mainly in my left bicep, but have quickly moved into most other areas of my body such as face, legs, head, buttocks, neck.  Primarily they are in my left bicep and both legs.  Typically they occur every few minutes with and can last from 2 seconds to 1 minute.  The more frequent they get, the longer they last.  As the day goes on, if I am having a lot of them, then my muscles begin to feel big and tired. At times they get so tired that it is hard to walk and write.  Sometime it feels like my muscles are screaming. It is a very electrical feeling running through my arms and legs.

Fatigue/Tiredness The tiredness comes and goes.  I may be fine for a month, but then I will feel tired and week for 2 or 3 weeks, sometimes longer.  This has been going on for several years, but in the last 4 years I have noticed that it is more frequent and the tiredness is different.  There are times when I get so tired that it feels like my eyes want to roll back in my head and I have to struggle hard to stay awake and focused. The feeling when this happen is kind of like a zap or someone is pressing a pause button.  It feels very electrical (if that makes sense).  There are times when I get out of the shower and have to sit down to dry off, or take breaks from getting dressed.  (I.E, dry off, sit down for 10 minutes, put on make up, sit down for 10 minutes, blow dry hair, sit down for 10 minutes....etc.)  Dr. Graham-Hooker prescribed Provigil and it seems to help a little, but not 100%.  I have told my Family Care Doctor about it in the past, he just said I wasn't getting enough sleep.  I was diagnosed with Epstein Barr last year and thought this explained it, but Dr. Graham-Hooker says no.

Tripping/Balance I have noticed over the past few weeks that I have a problem with tripping, kind of like I am getting caught up in my feet.  I cant remember this happening before 3 months ago.  I will be walking across the plant and can trip over my feet 3 times before I get where I am going.  I have to pay close attention to my foot steps to keep it from happening, but I cant figure out why.  My feet have been hurting badly during the same time frame, but I have attributed that to my shoes, even though it still does it when I don't wear them all weekend.  I also noticed during a prayer that I have a hard time with balance if standing with my eyes closed.  This also happens when my eyes are open, but is noticeable when they are closed.  I also tend to walk into people and walls frequently.  I never noticed this until my bf got mad at me because I kept pushing him into people when walking beside him.

Waterhead- This is just my word for how my head feels when I am feeling bad like I am now.  It feels like there is water in my head gushing around throwing me off.  I guess you could also say it is a heavy headed feeling.  It is hard for me to remember things when my head feels this way.  I cant think of how I want to say things I should know and struggle to find words sometimes.

Blurred Vision Experiencing this for the last 3 years.  Optometrist says 20/20, but I experience bouts where my vision gets so blurry/fuzzy that I cant see numbers on a clock, faces from more than a few feet away, road signs, etc.  Had a physical 3 months ago and said 20/20 again, but now I am having the blurries again.  They come and go as well.  There will be several weeks where I can see perfectly, but then suddenly I will have 3 weeks where I have a hard time.  I can squint a certain way and make out numbers and letters, but normal viewing is impaired.  This causes some to think that there is nothing wrong with my vision because sometimes I can read things from far away, but this is not always the case.   Does not appear to be associated with the tiredness or fatigue, as it does not get better or worse throughout the day, but occurs during the same time frame.  Typically if I am experiencing one then I am experiencing the other.  Have had my sugar checked several times when it is blurry and does not appear to be sugar related.

Memory I have been experiencing memory problems for a long time and have accepted as a fact of life.  I have a hard time remembering information for my job even conversations that I had yesterday.  I have had to begin keeping notepads and writing down important information and to do lists to keep this from affecting my job.