Multiple Sclerosis Community
I just want a diagnosis so I know I'm not going crazy
About This Community:

Our Patient-to-Patient MS Forum is where you can communicate with other people who share your interest in Multiple Sclerosis. This forum is not monitored by medical professionals.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

I just want a diagnosis so I know I'm not going crazy

Where do I start.
I seem to feel as I am a hypochondriac.
I guess maybe I should start with the fact that I have just remembered about 6 years ago my GP (at the time) said she felt I had a mild version of CFS.
I was tired all the time, and only kept on going  for the fact I had a 4.5 year old and a 2 year old.

Well its now 6 years on.  And I am falling apart completely.

Back on the 2nd January this year I had a car accident.  I was a little stiff the next couple of days but I was fine, so the next time I went to my doctor (we had moved so this was a new one), I let him know about the accident, didn't want any tests as I was fine.

Then on 3rd March 2008, I injured myself at work.  I was helping at another store.  They were doing a refit so I was working overtime helping do the refit.  
I was picking up some boxes and putting them into cages to move them to the new area, and the top box started to slip, so any ones normal reaction is to jerk forward to catch it, which I did, and instantly felt a pop in my back. I kept "working" well kind of for the next 5 minutes, but the pain just got worse.  I went to the supervisor and let him know.  He filled out all the appropriate paperwork and I left, going straight to the hospital.  Where they gave me 2 panadeine forte's and left me sitting there for 4 hours.  I sat there with my elbows on the armrests not wanting to move as it caused pain.

When I was finally called in by the Doctor, he poked my back, asked me to lift my legs and said he thought it was just a muscle strain and gave me the next day off.  And said 1. If it got any worse to come back to the hospital or go to my local doctor tomorrow, and 2. If I wanted to, he could do another test and stick his fingers up my bum to see if I was numb.  Well I politely declined his offer, although now maybe I should have said yes,and maybe I wouldn't be in so much pain still, maybe they would have done more tests there and then.

I went straight to my doctors on the Monday and was told to rest it and to come back if it didn't get any better.  It didn't and after about 2 weeks, when I was not getting any better, he decided, that he was going to refer me on to someone else.  I got the referral and rang around.  I was advised that if I got an MRI before the appointment, that would speed up the process a bit as I wouldn't get to the appointment and be told, there was nothing we can do until you get an MRI done. blah blah blah, long drawn out story.  9 months on now I'm single (hubby left in June) and still in pain!

In September, the Dr decided I must also be depressed due to my back and maybe anti depressants may even help my back pain, so I started Lovan in September, and I don't think anything has changed since.

I have posted all the results of the MRI back in April 2008 and the 1 and only answer I got was that it could be MS, didn't think much about it until about a month ago, when suddenly all these symptoms that I have seem to point to MS.

I went to my GP that I had been seeing for my work cover, and his reply was.  Well if next appointment it's not any better I'll look into referring you somewhere else.  (Seems he likes to refer people instead of helping with the initial diagnosis)

I felt this was not a good enough answer, so booked myself into another doctor, at another medical centre.  After yet another hours wait.  I got in to see him.  I wrote a list and told him all my symptoms (here they are)
*Exhaustion
*Headaches - constantly
*Pain Everywhere - especially still my lower back where I am injured
*Numb feet - most of the time
*Burning Pins and Needles in my thighs
*Getting the shakes in my hands
**Muscles Spasms - Arms, legs, stomach (Almost like when I was pregnant and the baby would kick) and fingers and thumbs, and tics in my face
*Memory Loss - Both short and long
*Word Recall - I loose the word I am trying to say, or just say the wrong word completely (I'm even having problems typing now.)
*Stammering, while trying to think of the right word.
*Incontinence - I had a vaginal sling put in back in 2006 but it's back
*Insomnia - most of the time
*Constant Yawning
*No sexual drive when I was with my husband (Separated in June, a little to do with my back injury and not being able to do much housework, and what I have just mentioned)
*Foggy Brain
*Half my bum and half my stomach are always icy cold
*Work is too much for me, come back home completely exhausted after 4 hours working.
*Had vertigo, spent 2 days at home in bed, vomiting every time I moved, and my eyes were going crazy moving from side to side. Now a month on and "attacks" of vertigo are getting further apart.
*During hot weather I absolutely melt, my face goes as red as a coke a cola can, and I have no energy what-so-ever.
*I am starting to drop things, like pen, mugs of coffee, etc
*I seem to have no strength left.  I used to be able to open the "hard to open jars" now I have to leave them.
I* have the sound of blood whooshing in my right ear all the time, and especially when it's quiet, it's deafening, I can stop it by holding my finger to my neck.
*My Eyes always hurt.  burning sensation when I blink and tears when I yawn.

He did a full blood count most things were OK, but here are the results that showed something is up.

Erythrocyte Sedimentation Rate (ESR)
Oct 21, 2008
ESR 44 mm/hr
normal range 0-12

C-reactive Protein (CRP)
Oct 21, 2008
CRP 15 mg/l
normal range <10

Liver Function Test
Oct 21, 2008
GGT 46 u/l
normal range <30

When I got the results, he suggested that it was probably all nothing but maybe it was Chronic Pain Syndrome. And that the high results were probably due to the inflammation in my back (8 months on, and still so high?)

I said that my shakes were getting worse, and now my daughter had started noticing it a lot more.  So he sent me off for a CT scan of my brain.  It came back clear.
Does a CT even show up MS lesions, or was that a complete waste of time.

He also sent me off for my hearing to be tested, and put me on antibiotics for my right ear and vertigo, hoping that would help.  Hearing test came back with right ear fine, left ear blocked. Audiologist laughed when I said I have problems with my right not left.

And he sent me off to have my eyes checked.  My prescription in one of my eyes has changed since my last test 2 years ago (It's been the same for over 10 years)  (I have astigmatism but now I must wear my new glasses more often)

I have now noticed my shaking is still getting progressively worse.  My memory is getting worse, I even took a wrong turn taking the kids to school the other day, the same route I have been taking for 2 years, twice a day! I seem to be inhaling my drinks more frequently this week instead of drinking it, and coughing and spluttering.

I know this it probably boring and really long winded, but can anyone help even by letting me know what I should be telling my doctor to do for me.

Thanks for taking the time to read my entry. I hope you made it all the way to the end without falling asleep!
PLEASE HELP!
Related Discussions
12 Comments Post a Comment
Blank
580765_tn?1274922960
I am not a doctor, but it seems that if your labs are elevated, the doctors would look at the situation a little more seriously than just CPS.
I am not diagnosed and am in limbo.  I keep a 'weird symptom' journal and write down any symptom that draws my attention.  I note the date, time, and circumstances surrounding the event.  I try to be as specific as possible.  This way my doc can know my exact symptoms.  Since I also have bouts of memory loss, I make sure that I can recall and share everything at by appointment.  Since I am not diagnosed, I keep track of everything, hoping that these weird symptoms are pieces of a puzzle that might someday be put together to give me answers.  If your doctor does not seem to listen to you or taks you seriously, maybe it is time to find a doctor who will work with you and not against you.  Read the post about psychic groans and you will realize how many of us are (have been) in your situation.
Blank
572651_tn?1333939396
Dear Jodestar,
Your frustration and anxiety come through in your words and I do wish I could help.  I really wish I had something to tell you about your medical condition that could help you out but unfortunately I am in no way a medical expert on MS -   I was dx'd in Sept, after just starting to think MS in late July so this is all pretty new to me. I am sure someone more knowledgeable on this forum will come along and give you their input.

You have been through a tremendous amount this year - from your back, to the husband, to all of the pain and tests and doctors.  I hope you get some relief soon.  

Please stay in touch here, if nothing else but to vent, Lulu

Blank
627388_tn?1222201812
Hi jodestar!

Boy, you are really being tested this year.....you have been through so many traumatic events and I have so much compassion for you.  From reading your posts, it seems to me that you may be having multiple health problems that may or may not be related but causing a cummulative effect in your body.  Like you, I have had a previous accident that caused neck/back injuries, a past EBV infection that caused chronic fatigue syndrome, and now I am experiencing MS symptoms but do not have a definative diagnosis of MS yet.  You also have several vertebral hemangiomas at T12, L3 and L4 which appear to be in the same location as your back injury from your work related accident.  Both of these things could be causing or contributing to your chronic pain condition.  Once the chronic pain begins, this sets up a situation that usually leads to chronic insominia, severe/continous fatigue and excessive daytime sleepiness.........at least it did and still does for me.  You just don't sleep well at night and you feel like **** during the day......there is never a time where you feel completely fully rested and alert.  This of course can affect your cognative function, causing memory lapses and such.  I can completely relate to what you are going through and I am hear to help you in any way I can.  

You have also had some horrible emotional life changing events happen during this same time with the loss of your marriage and I'm sure you have additional stresses from probably raising small children alone without the support of your husband to be there to help during this trying period that you are going through.  So, please do minimize these emotional stressors which could certainly didn't cause your pain but my be contributing to your level of pain throughout the day.  Stress, lack of sleep will definately exaserbate your pain.    

Yes, it is true that all your symptoms that you listed above could be caused by MS but I don't want you to rush to that consultion without a through evaluation by a good neurologist........which aren't easy to find!  I gather from your post's that you have only experienced these major neurological symptoms since this accident in March which was the same time that the hemangiomas were discovered?  Have you symptoms come and gone or have they been steadly constant in intensity since the accident?  If you haven't experienced the relapse/remissions characteristic of MS I would be tend to think that your symptoms could be due to something else.  Also, your elevated ESR, CRP, and liver function test makes me question whether you've had some viral or bacterial infection that could be causing your vertigo or other symptoms.  Was a total blood count done to rule this possibility out?

Anyway, I also left a comment for you in your other post and I hope that it helps you.  You will be in my prayers tonight.
Blank
Avatar_f_tn
Your right.  I put everything important into the diary in my phone.  If I need to remember something, I set an alarm.  This is the second doctor I have seen.  I left the first one and made an appointment the same day to see the second.  Hoping to have more luck at being listened to.  I will be going back again this Friday, and maybe I should be asking to just give me a referral to a Neurologist. As I said, I just want to put a name to what I'm going through, so I know how to move forward.
Blank
Avatar_f_tn
I certainly feel as if I killed a black cat with a mirror, who crossed my path,  while walking under a ladder, etc etc.  This year has been a biggy.

It started with the car accident 2nd Jan, Woo Hoo Happy New Year

My injury at work in March

Husband left Friday the 13th - there we go yet another "lucky" date

My Grandfather was rushed into hospital the next day. So I had to race in there as my Dad was away and I was his legal guardian.

I went back to visit on the Monday and my Clutch blew up in my car.

And On the Tuesday he died.

6 weeks pass and my husbands Grandfather passes away.  The Ex and I have been together for 20 years, married for oops here we go again 13 years.) So it was tough on me not being able to be there and grieve for him.

September 25th (My birthday to be precise) The Doctor decided I was depressed due to the pain still being so intense in my back so put me on antidepressants.

October Work Cover decided they felt I was fit enough to go back to pre-injury hours even though, my Doctor, or Chiropractor disagreed, so Work Cover took my payments away from me.  I was then having to live on $263  and seeing as my rent way $270 a week and an 11 year old Daughter and 8 Year Old Son, who enjoy eating everyday (LOL).  I was relying on any money the government would give me.

I was then told by Work Cover, that they would not pay the antidepressants as I put in the claim for a back injury.  So they sent me to a Psychiatrist to assess me. And thankfully it blew up in their faces and the Psychiatrist told them to start paying me again.

So Now we are nearing the end of November and the end of the Year, so please... nothing else go wrong!

Thanks for listening
Jodi
Blank
Avatar_f_tn
Thanks for your posts on both blogs as with my answer with Lulu.  I can't believe what a year I have had. And now with all my medical symptoms on top, if I could crawl under a rock I would!  Thank you for your support and hope to hear from you soon.
Jodi
Blank
572651_tn?1333939396
Hi Jodestar,
The work cover system in Australia is pretty different than what we have here in the states and the medical care is definitely not the same.  But we all seem to have those common threads of problems and frustrations.  I hope you will stop through here regularly to vent, ask questions or just find a shoulder to lean on while your doctors serch for answers.  My best, Lulu
Blank
307874_tn?1242759398
me too.
Blank
Avatar_f_tn
Wow, what a year, bless your heart!!  You have come to the right place, there are so many of us here who are suffering from symptoms but don't have a dx yet.  We call ourselves....limbolanders.....you are welcomed to become one of us.

I can't answer any of the medical questions, but just want you to know that we are here to listen and help you anyway we can.

You might want to check out our health pages they are great, you access them by clicking on the health page icon in the top right corner of the page.

Glad you found us, and look forward to talking to you in the days to come.

doni
Blank
Avatar_f_tn
bump
Blank
691864_tn?1298922797
I am sorry you are stuck in limboland as they call it.  I am right with you with my lab results similar to yours and symptoms also similar to yours and no answers.  Hope you find out something definitive soon.

Blank
147426_tn?1317269232
I don't have a lot of things to offer that have been missed.

The three indices of inflammation MUST be investigated.  The CRP is very high and the Sed Rate is moderately elevated.  The liver enzymes are just barely blipped up above normal and could be from a viral infection, obesity (fatty liver) or some other process.  The liver value is likely not important.  The "normal" values are a reflection of 95% of the population "most" of the time.  We all go slightly above the range occasionally.  But, the inflammation is not consistent with MS.  Your docs need to look elsewhere - like a rheumatologic or infectious problem.

With the tremoring you MUST see a neurologist.  Many neuro disorders cause tremor beesides MS.  And you are right about the uselessness of a CT scan in showing small lesions.  But, some medical systems demand that a CT be done before they will approve an MRI.  I don't know about Australia.

Stay with us and let us help out, especially since it seems you don't have a large support system.

I would be interested in knowing what other blood tests you had (not the results, but just what they were).

Welocme!

Quix

Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Multiple Sclerosis Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Neurology Answerers
147426_tn?1317269232
Blank
Quixotic1
Washougal, WA
572651_tn?1333939396
Blank
Lulu54
Dayton, OH
667078_tn?1316004535
Blank
HVAC
Durham, NC
987762_tn?1331031553
Blank
supermum_ms
Australia
1831849_tn?1383231992
Blank
kwarendorf
Great Neck, NY
Avatar_f_tn
Blank
SarahL2491
Alagash, ME