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mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/27/2008 4:31 PM (GMT -7)   
Hi, I really would like to chat with someone concerning ms in a chat room. I have questions and am awaiting further testing after an MRI that the neurologist said showed white matter abnormalities characteristic of MS, lyme disease, or vasticulitis. Please let me know if you could get on and chat. Thank-you.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 6/27/2008 7:19 PM (GMT -7)   
Hey mpj124

The other moderator and i will meet u in the ms chat room between 8:00 and 8:30 pacific time to chat. I hope u can make this time. If not, feel free to post u'r questions here and we and others will do all we can to try to answer them.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/28/2008 6:45 AM (GMT -7)   
Thank-you for listening last evening. it was so late and I was tired and I may have made no sense. You asked my questions and I realize, I just needed to share and have your feedback. This is the list of my symptoms that I took to the Dr. Do these sound typical of MS? I realize you can not diagnose it but I am curious as waiting is difficult. I am very athletic and work out daily and do not seem to have any motor problems. the neuro said my senses were extremely sensitive but so are hers! She scraped the bottom of my foot and my toes went down, she said a good sign? Sorry this is so llong. I have told no one and just need to know your thoughts.

Neck and shoulders ache daily
Feeling something stuck in throat when swallowing
Left arm daily feels like being squeezed
Rashes
Foggy head
Feet swollen when I wake every morning
Joints and muscles ache at night
Wake up frequently
Lymph nodes in groin and arms ache when tired weekly
Heartburn-weekly
mid back aches in night and morning-daily
pain under ribs more so within the past 2 weeks and nausea
pain walking upstairs radiates from neck to arm, not as much lately
Cramps in calves-at least 1/2 weekly
Hip pain every night, mostly left but can be both
urinating more frequently
tingling arms when I first get up
one eye bothers me, feels like it was swept by the wind and some pain
Menstrual changes

A typical day,

7: am..wake up tired after a restless night
get kids off and go right back to sleep

10 am:
Pain in right neck cord, level 3
Right arm aches some
Tired

1:30 pm:
head is hurting and right side of neck into shoulder
Scratchy throat and head hurts!!!!!!
Right arm hurts on and off

before 2: aches under arm low beside right breast
Fatigued

4:00 pm: fell asleep
woke up foggy headed
right side of head hurts, applying heat

8:00 pm: ache on right side even with shorts waist band
head weird and aches in back
left of belly button up and inch or 2 tender

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/28/2008 8:22 AM (GMT -7)   

Hey mpj,

It was nice chatting with you last night.  It is all right that you just wanted to vent and be heard.  That happens with anyone who is tired of being sick.  You did just fine.  I am sorry I lost my connection and didn't get back in time.  Maybe we can chat another time.

As for your symptom list - that is a difficult one.  Certainly some of your symptoms seem like they could be MS.  But you have many more that are not usually associated with MS.

Rashes, feet swollen in the morning, painful lymph nodes, heart burn are ones I have never heard associated with MS.

joint pain, nausea, eye pain (dry feeling?), menstrual pain, are also not normally associated with MS. 

It seems as you are fighting some sort chronic infection.  Have you ever been tested for lyme disease?  Maybe that is the way to go.  Or perhaps a rheumatologist?  These are just some suggestions.   

 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 6/28/2008 11:18 AM (GMT -7)   

Dear mpj123

I was dx w/MS years and years ago - I had many of the symptoms that you have described and the MRI reflected much the same.  It affected my central nervous system and I had arthritic symptoms, changes in my cycle, migraines related, lymph involvement, the numbness and tingling, nausea and on and on...

Many of these symptoms are indicative of some type of inflammatory response.  So, your quest is to figure out w/your doctor what is driving this in your body.  Whether infection or something else.

I do have questions and of course, no, we are not physicians.  We can listen and perhaps pose those questions that we often need others to ask us to help us be informed and better prepared for a visit to the doctor so that we can advocate in a way that achieves the standard of care that we need and merit.

Q.  Where do you live?

Q.  Can you identify anything significant event that occured either in health, diet, environment, activity, physiologically or emotionally (not for the purpose of some weirded out response,but related to immune response)...?

Q.  Does your pain stay in the same place, move around or migrate from one location in the body to another or resolve as the day goes, etc??

Q.  How old are you?

Q.  Have you taken photos of the rashes.  If not, and if you still have them or see others, take a picture.  In the meantime, describe your rashes, please.

Q.  That's nice that the neuro could relate to your sensitivity neurologically; but my question would be "is this typical of your reactions in the past or is it something new."

The pain in your neck could be causing some of the systemic and/or referred pain; however, if you have some type of chronic infection developing, it could reflect in this way b/c of the inflammatory response infections evoke. 

Did your doc run a chem panel to see how your white blood count looks and/or if your body seems to be fighting an infection?  ANA?  Autoimmune markers?  Thyroid panel?  Immune Complex markers?

Gretchen1 may be recommending something that would be worthy of checking into regarding Lyme disease; but you would need to be with a physician who understands how to appropriately test and diagnose you b/c of different standards of care that are in the midst of a heated political battle.  This simply means that if you go to a primary care that does not treat chronic Lyme, a basic standard lyme titer will be run which is known for its lack of specificity and sensitivity, yet is used b/c docs do not have adequate up to date tools nor the education yet.  If you choose to test for lyme, you just need to know that the CDC guidelines state that it is a clinical (based on your physical symptoms and history) diagnosis backed up by labs.  We can be of help to you if you choose to go in that direction.

You may email me.  I am not generally on this site; but, came on invitation b/c of someone who read your post and cares about your wellbeing and was concerned about your symptoms being properly diagnosed. 

Gretchen1, would you also keep a watch and float a note if I miss something or can be of further service.  There are others who are here at HW who may be able to be of encouragement in helping you to 'know'.

In the meantime, many have walked in your mocossins, so know that you are not alone.  You are right to ask the questions and it will be part of the puzzles that comes together as you learn to advocate until you know.

God bless,  Sojourner

You can also contact me through the Lyme disease Forum here on HW if you would like to communicate.  Just initate a thread w/my name and others will ring my bell!  Hang in there!  You are going to get your answers.

We have beautiful, caring moderators!


"For there is no secret and there is no defense; there is no possibility of control except through the aroused understanding and insistence of the peoples of the world. We scientists recognize our inescapable responsibility to carry to our fellow citizens an understanding of atomic energy and its implication for society. In this lies our only security and our only hope - we believe that an informed citizenry will act for life and not for death.  The release of atom power has changed everything except our way of thinking...the solution to this problem lies in the heart of mankind. If only I had known, I should have become a watchmaker."  ~Albert Einstein

www.stylebyheatherrose.com


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/28/2008 12:40 PM (GMT -7)   

Hi mjp123.  Gretchen1 asked for some input on your post from people who have Lyme.

How long have you had symptoms?  What do your rashes look like?  If you have not done so, be sure to get photos of them.  It is important documentation.  Place something near the rash, like a coin or ruler, before photographing to give it size definition.  Document the date the photos were taken.

Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick.  It is the second fastest growing infectious disease in the US after AIDS, and it is in every state.  Many people are bitten by ticks without knowing it.  They are tiny, they inject a numbing agent so you cannot feel them on you, and they often go in hard-to-see places.  Some people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS.  I do not know much about MS, but I know that in some cases Lyme disease can cause MS-type lesions.

Below is a Lyme symptom list.  You can have any combination of symptoms. 

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. 

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  The co-infection Bartonella can cause swollen lymph nodes and sore throats.

If you need a doctor recommendation, you can email me at ko_@bellsouth.net 

I also recommend having your thyroid function tested.  Thyroid disorders are not uncommon and can cause many of the symptoms you describe.  I suggest that you have your Free T3, Free T4 (besides the T3 and T4) and thyroid antibodies tested in addition to the normal panel.  They are not usually done but are necessary for a comprehensive view.  If you need help interpreting your results, let me know. 

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner. 

Don't give up, you will find out what is wrong.



D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 6/28/2008 6:01 PM (GMT -7)   
Wow there's some great great advice here... wish someone had prodded me like this way back when I I was buying the lazy docs attitudes that I was just worrynig bout nothing...
 
First thing my neuro did was pursue every avenue possible to prove it was anything BUT MS and I couldn't understand that since he seemed so darned sure it was MS but he kept insisting on test after test, waiting on checkups each quarter, blood work for another round (8-12vials) and I thought he was a little nuts when he said Lyme disease cos I've been a retired Boy Scoutmaster now for nearly10 yrs so how in the world could THAT be a problem NOW? He insisted gently to just do as he said while he works his way thru the process...
 
Process.. it's what it is... so be patient with yourself, keep listenening to good advice and pursue the knowldege until you have a conclusion, but don't jump on the first one that seems to be pointing in that direction... mine was going towards Pituitary tumor... and it may still go there at some point but it quickly made itself clearer fast and it's simply MS and probably has been most of this time.
 
However with that said, I am also Hypothyroid (and that in itself took nearly two years of fighting docs who thought I'd figured it was just a good excuse for my fatigure, sudden 1lb a week weight gaining, etc problem to get them to really really listen ... then it was an endocrinologist who figured out the right thyroid med!). So stick to your guns... there's an answer. We just gotta hold tight and pursue it.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/29/2008 1:24 PM (GMT -7)   
Gretchen1 said...
Hey mpj,

It was nice chatting with you last night. It is all right that you just wanted to vent and be heard. That happens with anyone who is tired of being sick. You did just fine. I am sorry I lost my connection and didn't get back in time. Maybe we can chat another time.

As for your symptom list - that is a difficult one. Certainly some of your symptoms seem like they could be MS. But you have many more that are not usually associated with MS.

Rashes, feet swollen in the morning, painful lymph nodes, heart burn are ones I have never heard associated with MS.

joint pain, nausea, eye pain (dry feeling?), menstrual pain, are also not normally associated with MS.

It seems as you are fighting some sort chronic infection. Have you ever been tested for lyme disease? Maybe that is the way to go. Or perhaps a rheumatologist? These are just some suggestions.


Thank you again..I did not expect so much help and questions. Today my head hurts in the right side and I am very tired. It is on the right side in the back and up toward my ear, this is where it usually bothers me and why I went to the Dr. My head is very tired. Do lesions cause that? The first Dr. said it was most likely neralgia? optic or a pinched nerve and did nothing so I went to my sister in law because sometimes it hurts so I cannot seem tofunction, she got me the mri .

mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/29/2008 1:32 PM (GMT -7)   
sojourner said...
Dear mpj123

I was dx w/MS years and years ago - I had many of the symptoms that you have described and the MRI reflected much the same. It affected my central nervous system and I had arthritic symptoms, changes in my cycle, migraines related, lymph involvement, the numbness and tingling, nausea and on and on...

Many of these symptoms are indicative of some type of inflammatory response. So, your quest is to figure out w/your doctor what is driving this in your body. Whether infection or something else.

I do have questions and of course, no, we are not physicians. We can listen and perhaps pose those questions that we often need others to ask us to help us be informed and better prepared for a visit to the doctor so that we can advocate in a way that achieves the standard of care that we need and merit.

Q. Where do you live? NB, CANADA

Q. Can you identify anything significant event that occured either in health, diet, environment, activity, physiologically or emotionally (not for the purpose of some weirded out response,but related to immune response)...? I HAD A GOOD FRIEND DIAGNOSED WITH CANCER WHO I STAYED UP NIGHTS CHATTING TO BUT I WAS TIRED BEFORE THAT. THE STRESS AND LACK OF SLEEP DID MAKE MY SYMPTOMS MORE PRONOUNCED.

Q. Does your pain stay in the same place, move around or migrate from one location in the body to another or resolve as the day goes, etc?? IT IS USUALLY ON THE RIGHT SIDE. SOMETIMES SLEEP RESOLVES IT BUT GENERALLY CAN LAST A FEW DAYS.

Q. How old are you? 46

Q. Have you taken photos of the rashes. If not, and if you still have them or see others, take a picture. In the meantime, describe your rashes, please. THE RASHES WERE LIKE 5 YEARS AGO. I DO SOMETIMES STILL GET THEM ON MY BOTTOM AND THE DR HAS GIVEN ME A TOPICAL CREAM FOR PSORISIS THAT HELPS JUST FOR A SHORT TIME.

Q. That's nice that the neuro could relate to your sensitivity neurologically; but my question would be "is this typical of your reactions in the past or is it something new." SINCE IT IS THE FIRST TIME THIS NEURO HAS SEEN ME, I HAVE NO IDEA IF IT IS NEW OR NOT.

The pain in your neck could be causing some of the systemic and/or referred pain; however, if you have some type of chronic infection developing, it could reflect in this way b/c of the inflammatory response infections evoke.

Did your doc run a chem panel to see how your white blood count looks and/or if your body seems to be fighting an infection? ANA? Autoimmune markers? Thyroid panel? Immune Complex markers? I HAD AN ANA OVER A YEAR AGO WHICH WAS HIGH, I THINK 163 BUT I WOULD HAVE TO LOOK. MY THYROID TEST ETEC, ALL NORMAL BUT IRON STORAGE FERRITIN LEVEL WAS 16 ON THE LOWER END. THIS YEAR THEY SAID MY ANA WAS FINE.

Gretchen1 may be recommending something that would be worthy of checking into regarding Lyme disease; but you would need to be with a physician who understands how to appropriately test and diagnose you b/c of different standards of care that are in the midst of a heated political battle. This simply means that if you go to a primary care that does not treat chronic Lyme, a basic standard lyme titer will be run which is known for its lack of specificity and sensitivity, yet is used b/c docs do not have adequate up to date tools nor the education yet. If you choose to test for lyme, you just need to know that the CDC guidelines state that it is a clinical (based on your physical symptoms and history) diagnosis backed up by labs. We can be of help to you if you choose to go in that direction.

You may email me. I am not generally on this site; but, came on invitation b/c of someone who read your post and cares about your wellbeing and was concerned about your symptoms being properly diagnosed.

Gretchen1, would you also keep a watch and float a note if I miss something or can be of further service. There are others who are here at HW who may be able to be of encouragement in helping you to 'know'.

In the meantime, many have walked in your mocossins, so know that you are not alone. You are right to ask the questions and it will be part of the puzzles that comes together as you learn to advocate until you know.

God bless, Sojourner

You can also contact me through the Lyme disease Forum here on HW if you would like to communicate. Just initate a thread w/my name and others will ring my bell! Hang in there! You are going to get your answers.

We have beautiful, caring moderators!

mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/29/2008 1:34 PM (GMT -7)   
ticker said...
Hi mjp123. Gretchen1 asked for some input on your post from people who have Lyme.

How long have you had symptoms? 3- 5 YEARS What do your rashes look like? RED RAISED BUMPS If you have not done so, be sure to get photos of them. It is important documentation. Place something near the rash, like a coin or ruler, before photographing to give it size definition. Document the date the photos were taken.

Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest growing infectious disease in the US after AIDS, and it is in every state. Many people are bitten by ticks without knowing it. They are tiny, they inject a numbing agent so you cannot feel them on you, and they often go in hard-to-see places. Some people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS. I do not know much about MS, but I know that in some cases Lyme disease can cause MS-type lesions.


Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing

Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

[2>

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. <FONT size=2><FONT size=2>Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.




I also recommend having your thyroid function tested. Thyroid disorders are not uncommon and can cause many of the symptoms you describe. I suggest that you have your Free T3, Free T4 (besides the T3 and T4) and thyroid antibodies tested in addition to the normal panel. They are not usually done but are necessary for a comprehensive view. If you need help interpreting your results, let me know.


[color=blue>http://www.ilads.org/burrascano_0905.html</U></A><FONT face=Verdana>"Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner.

Don't give up, you will find out what is wrong.</FONT></FONT></FONT>

mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/29/2008 2:04 PM (GMT -7)   
you have all been terrific...I am confused as how to answer all of these or use the board. It says 18 members are on line...could some get in the chat room? I am wondering if the head problem would have to do with the MRI lesions?

ranger709
Regular Member


Date Joined Apr 2007
Total Posts : 132
   Posted 7/1/2008 11:54 AM (GMT -7)   
Hey mpj. I also had white matter lesions on my Gallium scan MRI. I had gotten a MRI after coming down with a mild case of optic neuritis and not being able to see out of one eye, most of the time this is caused by MS but a small percentage of the time it can be caused by lyme. They're there from inflammation and scarring so technically thats the definition of MS, but mine were caused from having Lyme for 10 years. My head used to throb unbelievably bad at the back of my head, sort of near the base of my skull and it would just radiate out. Once a migraine literally lasted a month. I never had a CDC positive western blot, but I did have bands show up that are only known to be caused by lyme, along with 3 equivocal elisa's. After antibiotic treatment, I have maybe 4-5 minor headaches in over a year compared to 4-5 bad ones a month. I would guess that your head problems are due to inflammation or reduced blood flow; have they considered a SPECT scan? I'm not saying its not MS or its not Lyme but you should explore all of your options and educate yourself on the possibilities of both. Just because a case is rare or uncommon doesnt mean that its impossible, after all, were all already statistics in a sense regardless.

mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 7/1/2008 12:05 PM (GMT -7)   
Thank-you, I am not sure what a SPECT scan is but I will mention it. My head is not like a migraine, I have had migraines in the past. It aches some but is sore and hurts inside and to the touch. It seems to happen more when I am extremely fatigued. Saying that, I am usually fatigued and more so lately. I just got home fro a parade and the sun zapped all my energy, am going to nap. Are you ever on chat? Thank-you again!







ranger709 said...
Hey mpj. I also had white matter lesions on my Gallium scan MRI. I had gotten a MRI after coming down with a mild case of optic neuritis and not being able to see out of one eye, most of the time this is caused by MS but a small percentage of the time it can be caused by lyme. They're there from inflammation and scarring so technically thats the definition of MS, but mine were caused from having Lyme for 10 years. My head used to throb unbelievably bad at the back of my head, sort of near the base of my skull and it would just radiate out. Once a migraine literally lasted a month. I never had a CDC positive western blot, but I did have bands show up that are only known to be caused by lyme, along with 3 equivocal elisa's. After antibiotic treatment, I have maybe 4-5 minor headaches in over a year compared to 4-5 bad ones a month. I would guess that your head problems are due to inflammation or reduced blood flow; have they considered a SPECT scan? I'm not saying its not MS or its not Lyme but you should explore all of your options and educate yourself on the possibilities of both. Just because a case is rare or uncommon doesnt mean that its impossible, after all, were all already statistics in a sense regardless.

ranger709
Regular Member


Date Joined Apr 2007
Total Posts : 132
   Posted 7/1/2008 1:34 PM (GMT -7)   
Typically I'm not on chat as I check throughout the day at work so its a bit hard for me to do that. I've seen both Lyme and MS firsthand as the mother of a woman I was with for 7 years had MS. I'd be glad to answer any questions you have, but I want to reiterate that everyone's case is different and what worked for me might not work for you.

sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/1/2008 4:53 PM (GMT -7)   
MPJ123 :Just go to the bottom and hit post reply then put the name and you can write back to that person. They will see it and read it. You can reply to everyone on one or do them seperate. Forget about the bottom part about who is online for now. I am not sure about that.

I am new to this too and just got an MRi similar to yours so maybe we can compare notes. Okay now just write back.Write down below quick reply and I will look later.

mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 7/1/2008 5:17 PM (GMT -7)   
Hi, I hope I have done it correctly. I am not planning to change my life whatever the diagnosis and am looking for another answer besides MS I guess. However, I am hoping if it is MS it is a mild case. I do not have any motor problems. I do wake up often with tingling legs when I first get moving but this leaves. I was in the sun today and I do notice , it drains me and I came right home and slept for 2 plus hours. I would have slept longer but had to take my daughter somewhere. The worse part is the fatigue, whatever is causing it and the tightness in the back of my head which bothers me more when fatigued. I have had so many tests that I figured the MRI would show nothing. Both my Dr and the neurologist feel what they saw warrants concern and it isn't just nothing. I never asked or listened carefully to what they saw as I was surprised. I am getting a copy of the report tomorrow. I am not sure what it will tell me but maybe someone here can make sense of it, Thank-you...

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 7/1/2008 6:45 PM (GMT -7)   
Hey mpj123

The part at the bottom that says who is online is just that...who is online at the moment ... Remember tho, just because someone is online doesn't mean they are regulars of this forum or are on this forum either...so if u'r waiting for someone u should post to them or see if their email is listed. If u are really looking for someone and need them immediately, click on the 'details' word down where it says who's online...and it'll take u to another page that shows u where that person is at the moment. U can then try to get their attention should u really need it.

As for posting, of course u'r doing it perfectly right. Is there some part of it that ur' trying to do that i can help u with? Other than posting in the quick reply box at the bottom, u can also click on the 'post reply' button if u have a link to share with others. That is the best way to post it to be sure it's going to be active when u hit submit. Otherwise we may need to go in and activate it. No worries friend, u are doing great! If u have other questions that we can help with, be sure to post or email one of the mods and we'll be glad to do all we can to help u get it resolved. Take care friend.


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*

Post Edited (rhondab) : 7/1/2008 7:48:34 PM (GMT-6)


mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 7/3/2008 9:00 AM (GMT -7)   
MRI Results

I picked up a copy of my MRI results:

Can anyone help me make sense of this?

Several small hypertintense foca T2 and FLAIR are present within subcortical white matter and periventricular deep white matter of both frontal and both parietal lobes. These are sub centimeter in diameter. They range in size from 1-2mm to a 9mm lesion in the left frontal lobe. No discrete callosal lesions are identified at this time on the sagittal T2 weighted sequence of the corpus callosum. The pituitary gland is not enlarged. The craniocervical junction is normal in appearance, The ventricles are normal in appearance. No posterior fossa lesions identified. Normal flow voids are present in the vertebrobasilar and internal cartoid arterial systems.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 7/3/2008 9:55 AM (GMT -7)   

Hey Missy,

I am certainly no expert.  It seems that you have several white matter lesions.  They are all quite small in size.  Many times the ones that are less than 3 mm don't even show up.  The 9mm lesion is a decent sized one.  Frontal and parietal lobes are definitely places where MS lesions can show up.  But again, lesions are caused by many things.  It will be up to your doctor to sort things out.  I know you are also investigating lyme disease and that may well be the cause of those lesions.

You have an extremely long list of symptoms and some of those really seem to be from sort of infection.  The swelling of your feet in the morning, the rashes and the lymph nodes are not usual symptoms of MS as far as I know. 

When do you see the doctor again?  What other tests is he/she going to run?  I would expect to see blood work and a lumbar puncture to go with this.  I would also seriously look into the lyme.  Lyme is very very hard to diagnose.  The blood tests are notorious for showing false negatives.  You may want to post on the Lyme board as to the best labs to use.  I know Igenex can be a good one.  Keep us posted as to what you learn from your doctor.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 7/6/2008 7:41 AM (GMT -7)   
Hi.. I will not see the Dr. again until all the tests come back. We have to wait to have testing in Canada so who knows. In the meantime, I still have daily a sore head , the back right side that sometimes aches into my ear. It is annoying and seems to happen more as I get tired or when I first wake up. Have you ever heard of this? It is why I went to have an mri the first place and wonder if it is a ms symptom or more related to my osteoarthritis in my neck and back. Tnaks...Missy

sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/6/2008 12:42 PM (GMT -7)   
Hi I am also in the place where they are doing blood tests and waiting for results. I was having a sore head as well. Where is yours? I had soreness at the bottom of my head like behind my ear a little lower. It always felt like swelling. Sometimes it felt like my hair hurt. I kinda want to figure out what is going on. I had a car accident then had an MRI. The fatigue for me is so bad. I also have some other symptoms you have. Hopefully the neuro will figure it out. I had an MRI three years ago for headache but they never said anything about the lesions and now they progressed so I need to find out.

mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 7/6/2008 5:03 PM (GMT -7)   
Hi, My head is tight and is at the right base below and to the left of my ear and often aches into my ear. however, b it is mostly sore, not swollen but sore to the touch at times. I have it daily and bothers me more so when fatigued or when I first wake up. Good luck to you. Let me know how things go.

mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 7/7/2008 4:04 PM (GMT -7)   
Hi...here is what my report said from my mri..

Several hyperintense foci on T2 and FLAIR sequences are present within the subcortical white matter and periventrular deep white matter of both frontal both parietal lobes. They range in size from 1-2 mm to 9mm lesion in the left periventricular region. They are nonspecific. Certainly the plaque of multiple sclerosis can have this appearance and given the patient's young age MS should be of prime concern. Such foci can occur in patients with longstandig history of underlying vasculitides or migraine. These can occur associated with ischemic change in the white matter due to small vessel disease. They can occur with Lyme disease. Again given the patient's young age and history MS should be of prime concern.

Dies this seem pretty conclusive to you?

sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 7/9/2008 6:32 AM (GMT -7)   
Hi I am not sure about the MRI they have to do other tests as well to make it conclusive. That is what they are doing with me. I went yesterday for BAER test and visual. I went for bloodwork. I think when they get those results they will decide if Lumbar puncture is necessary. I also need to go for spine MRI. Everyday an appointment. ouy! Did they check for Lyme? I also need to do more testing for that.

mpj123
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 7/11/2008 5:20 PM (GMT -7)   
No, I have a blood test the 17th and they will do more tests and they are also looking at lyme. Here in Canada, you get on a waiting list for tests so things do not happen quickly which makes waiting difficult. Do you ever get online? The moderators did one night for me in the chat room. I would really like to chat to them again now I have the report from the radiologist.
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