Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Multiple Sclerosis 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.
Ok, so here's a timeline and lists of tests run... HELP ME!
by Sunnytoday, Jun 30, 2008 06:35PM
I know this is long. I'm sorrry. I'm just looking for answers.
If you read my earlier post a few hours ago, you will perhaps understand better.
(my parents are begining to believe that perhaps I am depressed along WITH something else). I don't know. I guess I will just do whatever and take the meds and then if they work and treat some of the symptoms, great. If not, well we still have a problem here. At this point I don't think another Dr. is an option, my parents seem set on trying to do whatever Dr DWI wants for a few months at least to give him a chance. Perhaps he has something right, he claims the Cymbalta will help with the pain and increase my congnition. If so, I'm happy.
Tests that have been run: x-rays of lower spine, rheumatoid test (7 antibodies out of the 12 needed to be positive). Celiac diseasa test, and a CBC, and I know at some point I had a thyroid test done that was ok.
I have been dx'd with gastroparesis, IBS, LOW estrogen, chronic migraines, TMJ, scoliosis, severe asthma and allergies, and hypermobile joints (they didn't know why my joints hurt).
Ongoing Symptoms TIMELINE OF BEGINNING OCCURANCE
2006
Balance problems. I began to fall backwards, grasping for objects, often banging my arms into doors, walls or anything else nearby. This seemed to go in cycles
Numbness/prickling in hands when in cold water, weather, air-conditioning.
Spring 2007
Lisping when I am tired- this is noticed and commented on by others.
Fall 2007
Tingling in hands. This occurs after water runs over my hand or something has lightly rubbed over it.
Nov. 2007
Jerking or jumping muscles in my legs, hand and face
Dec. 2007
Left eye-lid drooping-(when tired I often tilt my head to counter this)
Jan. 2008
Itchy feelings/burning sensation under skin when I get warm. Begins on my back and neck traveling down limbs when I am in any type of warm weather, clothing, or a shower. This feeling now LINGERS after I am cooling down.
April 13th 2008 (Flare, symptoms gradually improve. Doctors start to look for Dx. due to ON)
· Intense Weariness
· Stumbling because my feet feel “heavy”
· Balance problems increased- I am tipping backwards several (5-6) times a day when I’m standing still and falling backwards when I’m tired.
· Right Eye- eye pain, blurriness, and white lights through the night
· Weakness in hands increased -Dropping small objects daily
· Memory trouble such as naming simple objects, simple addition, and getting lost driving in familiar parts of town.
· Shocking in my left hand every time I touch something (the lighter the touch, the worse the shock)
· Jerking/jumping/contracting muscles in my feet, legs, hand, face and eye muscles has increased and occurs often throughout the day- this is noticed by others.
May 26th 2008 Beginning of Flare
(symptoms gradually improve, some stay)
Change of gait. Woke up May 26th with heavy legs, and after that had difficult walking and improved slowly while shuffling.
Buzzing feelings in my arms, legs and face? I feel numb in those areas sometimes but at this point I just feel like a buzz runs through it, like there's something crawling on it for a few seconds.
My knees are starting to buckle for a week, I'm used to falling backwards but it's a little frightening to me when BAM, I'm just falling straight down because me knees gave out. (this improved after first week of flare)
Swaying when tired. My head would also drift back or to the side until it rested on my shoulder or someone asked me “what’s wrong?”
Hands twitching and curling toward myself. My arms will also twitch- I can't tell you in what area... becuase the whole thing moves, and you can see if move if you are looking at it. Sorta like a rapid jerk- it looks like my arms just jumped on it's own.
For a few weeks my face was twitching on the one side, but that's gone now, and I'm glad, but for several weeks when I pronounce certain sounds the one side of my face sorta twisted slightly and they come out all funny sounding.
Difficulty spelling. I'm leaving out letters or switching them all around and I now have strange handwriting that most people can’t read.
New pain in my feet and bee-stinging sensation in my arms. It feels as though something is poking straight through the bottom of my fingetip into my fingernail.
June 1st, 2008
An episode of severe jerking in church that scared my friends and I almost fell out of my chair.
June
Difficulty with perception? For example: I was brushing and blow-drying my hair one morning and realized that the blow-dryer was too heavy for my left hand (I have a tiny one) so I switched it to my right hand and my brush to my left hand when i picked them up the second time. WELL- the brain never got the switch, and I held the brush above my head and WHACKED my head with the hairdyer, obviously in an attempt to brush my hair with it! I wanted to cry but decided to laugh becuase it was rather hilarious- but I hit it hard enough to hurt for a long time.
June 11th
Water running down leg feeling.
June 22nd,
Increased weariness.
June 23rd – 25th
(hospitalization)
Gait change. IF I try to pick up my feet I can get them up but then I end up taking tiny short "plopping" steps that dig into the ground. It seems to go better if I sorta swing my legs out and around in a short shuffle.
New pain in legs. Is sometimes triggered by something rubbing on it, and is sharp a burning and goes all the way through.
Difficulty understanding where I am in relation to other things. I hit my head HARD on the car frame.
Hard muscle spams, or muscle jerking spells. Starts with that electrical feeling in legs and then the entire body jerks once or more.
Stuttering. Repeating a word over, and over.
IF YOU'VE MADE IT THIS FAR... THANK YOU!!!
ok, so what should I be asking to be tested for?
Should I just say, ok... take the MRI of head and C-spine tomorrow, and then if nothing shows up take the Cymbalta and then just wait for something else to happen?
* note, the cymbalta has GI side effects, and the Dr. said to watch out for that. I have enough GI trouble as it is, so this may not work out.
~Sunnytoday~
If you read my earlier post a few hours ago, you will perhaps understand better.
(my parents are begining to believe that perhaps I am depressed along WITH something else). I don't know. I guess I will just do whatever and take the meds and then if they work and treat some of the symptoms, great. If not, well we still have a problem here. At this point I don't think another Dr. is an option, my parents seem set on trying to do whatever Dr DWI wants for a few months at least to give him a chance. Perhaps he has something right, he claims the Cymbalta will help with the pain and increase my congnition. If so, I'm happy.
Tests that have been run: x-rays of lower spine, rheumatoid test (7 antibodies out of the 12 needed to be positive). Celiac diseasa test, and a CBC, and I know at some point I had a thyroid test done that was ok.
I have been dx'd with gastroparesis, IBS, LOW estrogen, chronic migraines, TMJ, scoliosis, severe asthma and allergies, and hypermobile joints (they didn't know why my joints hurt).
Ongoing Symptoms TIMELINE OF BEGINNING OCCURANCE
2006
Balance problems. I began to fall backwards, grasping for objects, often banging my arms into doors, walls or anything else nearby. This seemed to go in cycles
Numbness/prickling in hands when in cold water, weather, air-conditioning.
Spring 2007
Lisping when I am tired- this is noticed and commented on by others.
Fall 2007
Tingling in hands. This occurs after water runs over my hand or something has lightly rubbed over it.
Nov. 2007
Jerking or jumping muscles in my legs, hand and face
Dec. 2007
Left eye-lid drooping-(when tired I often tilt my head to counter this)
Jan. 2008
Itchy feelings/burning sensation under skin when I get warm. Begins on my back and neck traveling down limbs when I am in any type of warm weather, clothing, or a shower. This feeling now LINGERS after I am cooling down.
April 13th 2008 (Flare, symptoms gradually improve. Doctors start to look for Dx. due to ON)
· Intense Weariness
· Stumbling because my feet feel “heavy”
· Balance problems increased- I am tipping backwards several (5-6) times a day when I’m standing still and falling backwards when I’m tired.
· Right Eye- eye pain, blurriness, and white lights through the night
· Weakness in hands increased -Dropping small objects daily
· Memory trouble such as naming simple objects, simple addition, and getting lost driving in familiar parts of town.
· Shocking in my left hand every time I touch something (the lighter the touch, the worse the shock)
· Jerking/jumping/contracting muscles in my feet, legs, hand, face and eye muscles has increased and occurs often throughout the day- this is noticed by others.
May 26th 2008 Beginning of Flare
(symptoms gradually improve, some stay)
Change of gait. Woke up May 26th with heavy legs, and after that had difficult walking and improved slowly while shuffling.
Buzzing feelings in my arms, legs and face? I feel numb in those areas sometimes but at this point I just feel like a buzz runs through it, like there's something crawling on it for a few seconds.
My knees are starting to buckle for a week, I'm used to falling backwards but it's a little frightening to me when BAM, I'm just falling straight down because me knees gave out. (this improved after first week of flare)
Swaying when tired. My head would also drift back or to the side until it rested on my shoulder or someone asked me “what’s wrong?”
Hands twitching and curling toward myself. My arms will also twitch- I can't tell you in what area... becuase the whole thing moves, and you can see if move if you are looking at it. Sorta like a rapid jerk- it looks like my arms just jumped on it's own.
For a few weeks my face was twitching on the one side, but that's gone now, and I'm glad, but for several weeks when I pronounce certain sounds the one side of my face sorta twisted slightly and they come out all funny sounding.
Difficulty spelling. I'm leaving out letters or switching them all around and I now have strange handwriting that most people can’t read.
New pain in my feet and bee-stinging sensation in my arms. It feels as though something is poking straight through the bottom of my fingetip into my fingernail.
June 1st, 2008
An episode of severe jerking in church that scared my friends and I almost fell out of my chair.
June
Difficulty with perception? For example: I was brushing and blow-drying my hair one morning and realized that the blow-dryer was too heavy for my left hand (I have a tiny one) so I switched it to my right hand and my brush to my left hand when i picked them up the second time. WELL- the brain never got the switch, and I held the brush above my head and WHACKED my head with the hairdyer, obviously in an attempt to brush my hair with it! I wanted to cry but decided to laugh becuase it was rather hilarious- but I hit it hard enough to hurt for a long time.
June 11th
Water running down leg feeling.
June 22nd,
Increased weariness.
June 23rd – 25th
(hospitalization)
Gait change. IF I try to pick up my feet I can get them up but then I end up taking tiny short "plopping" steps that dig into the ground. It seems to go better if I sorta swing my legs out and around in a short shuffle.
New pain in legs. Is sometimes triggered by something rubbing on it, and is sharp a burning and goes all the way through.
Difficulty understanding where I am in relation to other things. I hit my head HARD on the car frame.
Hard muscle spams, or muscle jerking spells. Starts with that electrical feeling in legs and then the entire body jerks once or more.
Stuttering. Repeating a word over, and over.
IF YOU'VE MADE IT THIS FAR... THANK YOU!!!
ok, so what should I be asking to be tested for?
Should I just say, ok... take the MRI of head and C-spine tomorrow, and then if nothing shows up take the Cymbalta and then just wait for something else to happen?
* note, the cymbalta has GI side effects, and the Dr. said to watch out for that. I have enough GI trouble as it is, so this may not work out.
~Sunnytoday~
See if you can talk him into giving you a T-spine as well - your weak legs could be because of a spinal cord lesion. Are you having any bladder problems (urgency, difficulty controlling bladder, or going several times a day?) If you've got a lesion in the T-spine, it will affect your proprioperception (where your body is) and balance.
If nothing shows up on the MRI of head, t-spine, and c-spine, then you're back to square one. However, with your symptoms, I would expect SOMETHING to show up!
I know that antidepressants are good with cognitive problems and neuropathic pain, especially drugs like Lyrica. However, with cognitive problems, neuros usually recommend Aricept, which is a Alzheimer's drug. I've heard good things about it.
I don't know if you can get it, but there's something called 'optical coherence tomography' which is basically a look at your optic nerve. It'll show atrophy of the nerves that won't show up on an MRI. It's been shown to accurately predict MS activity, so you might ask for it and see what happens.
Yes, the MRI is with and without contrast.
However, he says "if nothing lights up" on the head and c-scan than he won't do a L and T scan. Nothing more.
I do have urgency and "running to the bathroom"... I wasn't sure if that connected or not. I've had a few weeks were this was almost unbearable and had trouble with controlling the bladder... and yes, it was tied into my flares, or whatever they are. I figured this had to do with the UTI's I had last fall... but this has stuck around. Gracious, what else embarassing is connected? (Grin)
Thanks for the explanation of proprioception. I just have to watch out... hitting ones head isn't safe.
~Sunnytoday~