Recently told may have M.S.

I recently had a closed head injury, sever concussion, neck trauma, dislocated left thumb on July 3rd, 2009
I finally got to see a Neurologist on August 17th, 2009, who ordered an E.E.G. and M.R.I. of my brain.
I have been suffering several symptoms because of the concussion, etc.
I returned to the Neurologist on August 27th, 2009, to hear the results of the tests.
The E.E.G. came back O.K., no seizures.
The M.R.I. results gave two points of interest:
1. a cyst in the center of the brain about the size of a walnut
2. 12-15 images of the deterioration of the myelin sheath

Which he stated was probably M.S.
He said however since he didn't have a previous M.R.I. to compare it to he couldn't say for certain.

So, I am to return in 2 months of have another M.R.I. done on my brain to see if it has gotten worse.
In the meantime, all my symptoms point towards M.S., but we will not start any treatment until
we know for certain.  Also, since my symptoms are severe I cannot return to work for at least 2 months.

Is this typical for M.S.?

[Lulu54]

Socrates,

Welcome to our MS forum here at MedHelp.  You might be surprised how many here had their MS accidentally discovered by doctors looking for something else.  

Most doctors are hesitant to call it MS based on one set of tests - waiting two months to be rechecked is really not that unusual.  

While you wait, I would recommend you check out our health pages (yellow icon, upper right side of this page) - you will find excellent infomration written by our members to help you understand the diagnosis process, what MS is and lots of other topics.

I'm sorry you are dealing with such a large unknown right now

I hope you will return here often and ask all the questions you want - that's what we are here for.

welcome to the club!
Lulu

[kmil1999]

Welcome to the forum.  As you will see there are many of us that don't have a the MS diagnosis but have been working either to it or away from it.  This has been the best medical community I have ever found.  The community leaders as well as all the memebers are very knowledgable and are open to all questions.  You just inherited many friends!

Sorry you are dealing with so much.  May I ask what caused the trauma that you went through?

The health pages are great, and if you are having trouble deciphering them d/t the trauma, don't be afraid to ask the forum.

Hang in there!
Karen

[tiredofwaiting4answers]

Hello

I feel your pain and anxiety.  I recently had an MRI in which 2 lesions were definitely found and possibly 2 others (apparently the radiologist missed them) and I had demyelination of the myelin sheath.  I was told that this was MS hands down....

Turned out not to be that simple.  Apparently my lesions are located in the wrong sections of the brain and my doctor failed to inform me that there were other causes for the demyelination.  Have you checked your B12 levels?  What other symtpoms are you experienceing?  

It is so difficult to sit around and wait.  I have been taking tests now for 3 months straight, and I don't think I am any closer to an answer.

Wish you the best of luck

[socrates2k1]

On July 3rd, I fell of my back deck, as I was measuring it for replacement.  One of the boards broke in half and I fell.  I landed, like an old lawn dart, head first into the ground, heard my neck "pop".  I tried placing my left hand down, and again heard a "pop".  This resulted in what was termed a closed head injury (severe concussion) and severe neck trauma, and a dislocated left thumb (with torn ligament and tendons).  I was placed in a hard neck brace and later had surgery on my left thumb.

Since the accident, I have had many symptoms:
Stuttering, ringing in the ears, severe nausea, dizziness, black outs, inability to feel the urge to use the bathroom, inability to feel hunger, blurry vision, double vision, graying vision, problems with long term memory, but more problems with short term memory, great troubles with cognitive thinking, I cannot seem to do more that one given task at a time, I have tingling and numbness in different parts of my body, I cannot seem to latch on to the current day, date, year.  Right after my accident, when asked what month was it, I said, "August" and when asked what year was it, I said, "2010".  Sometimes, I do not even remember my own name.  I cannot walk without a walker, because my walking is still unsteady.  I have what I call "black outs" what this means is, think of your body as running on electricity and someone shuts off your main breaker, so you begin to fall, but before you hit the ground they turn it on again (this is happening on average 10 times per day).  I have even found myself forgetting what I'm talking about, in mid thought.  I still have lots of pain, in the back of my neck and back of my head, and have lots of headaches, I also have severe constipation, and pain in both kidney areas.  I seem to always be tired or fatigued, I have lots of uncontrollable tremors, my left side seems to have been the hardest hit, I'm much weaker on my left side, I have lost sensation, and if I close my eyes many times cannot tell the correct location of a minor touch (like the time of a pin), I'm sure there are more, but that's what I can think of, for now.

[sllowe]

Hi there,

Welcome.  I'm not so sure of the instances of cysts and typical MS. I think it worth exploring.

It's so difficult to get through each day w/what you are experiencing and no definite answers. If it were me, I would ask the Dr. to line up a 2nd opinion instead of waiting 2 months for a re-eval.

Oh, and are the 12-15 mentioned in the report areas of demyelination -  lesions?  

So sorry for what you are going through. Hope we can help you out.

ttys,
shell

[socrates2k1]

To answer your question about lesions, the answer is yes, 12-15 lesions, in
various sizes, and they are a separate issue from the cyst.

[socrates2k1]

On Thursday, September 3rd, I had an incident.
I was just finishing up a session with my Speech Therapist, and was getting ready to sign my name, on her laptop (which is typical).  However, something happened
I "froze up" I could not get my hand to write, it wasn't that I didn't know my name,
I just couldn't get my hand to write it.  Then I got tremors in that arm, and started to
hyperventilate.  My wife ended up calling an ambulance, so I went to the E.R.
Now, the odd thing is, they couldn't get a Neurologist or Neurosurgeon to come and
help.  So, the treating doctor in the E.R. his hands were tied.  He said it could be
a stroke, or a panic attack, or stress attack.  However, he believed it was probably
a minor stroke, not a panic/stress attack.  So, once again, I'm in the "unknown"
and may never know what happened, therefore, I have no way to try to prevent it.

[socrates2k1]

I was recently told, I "may" have M.S. (it's just a matter of formality before my Dr. says I do have M.S., he is waiting for a couple months to do another M.R.I. to confirm his suspicions.  In the meantime, I'm trying to learn everything I can about M.S. and this website & forum has been great.

My question is, what is a flair-up?
Does it mean all of these symptoms will dissipate, then return?
Or does it mean that my symptoms will get worse, then better, then worse, etc.?

I have practically all the symptoms for M.S. and to the extreme.

I'm just curious to what to expect, problems with short-term and long-term memory,
cognitive thinking, etc.  Will it never get back to where it was?

Lots o questions, not many answers.

Thank you for your time, consideration, and cooperation, I appreciate it.

[HVAC]

A flair up is when symptoms get worse for a period of time days, weeks, months.

Everyone with MS is unique. MS does different thinks at different times to different individuals. Some people get over attacks or flairs others may partially recover.

There is inflammation and myelin damage. Inflammation can be reduced and problems associated with it can resolve. Myelin usually can't be repaired. Myelin damage is like shorts in an electrical system.

No Doctor can tell any of us exactly what course our MS will take,

Alex

[socrates2k1]

Alex,

Thank you very much, for giving me an idea of what a flare-up is.

The problem for me is, (due to a fall) and a resulting severe concussion,
neck trauma, and dislocated left thumb (that required surgery), it's hard
to know what "symptoms" are concussion related and which are
M.S. related.  My accident was on July 3rd, 2009, the brain M.R.I. was
performed on August 19th, 2009, and I was told the results on
August 27th, 2009.  The results of that M.R.I. are what told my
Neurologist, I had a cyst (the size of a walnut in the center of my brain)
and 12-16 "lesions" showing the loss of myelin sheath, which pointed
him to M.S.  He said since he did not have any previous M.R.I. to
compare it to, he could not positively say that it was M.S. until he sees
another M.R.I. in 60 days.

My symptoms: ringing in ears, nausea, dizziness, black outs, cognitive
thinking trouble, short-term memory loss (now fair to poor), long-term memory
loss (fair), tremors, tingling, numbness, sharp pain in random areas,
blurred/cloudy vision, stuttering, headaches, migraines, extreme fatigue,
inability to follow several directions given at once, poor balance, inability to feel
hunger or thirst, inability to know when I have to use the bathroom (but
have never had an accident, I simply try to urinate every 4-6 hours to
keep my kidneys empty).  I guess this would come in handy if I wanted to diet, because I'm never hungry (but nauseated all the time), constipation, etc.

The only symptom that seems to have gotten better, is my walking.
I'm not as shaky, but still walk with a walker (in case I have a black out),
my Physical Therapist suggested using the walker, even if I feel steady,
because that 10th time (9 out of 10, O.K.) I might fall and injure myself
further.

I have not been back to work since my accident, with no real idea of when
I can go back to work.  It is up to my Neurologist, as to when I will be
fit to return to work.  I last saw him, on August 27th, 2009, and he told me
to come back in 60 days (October 28th, 2009), they will do another M.R.I.
to see what has happened during those 60 days.  September 3rd, I went
back to the E.R. because I "froze up", trying to write but my hand would
not, then tremors.  The E.R. Doctor gave me medicine to relieve the tremors.
His hands were tied, because he needed a Neurologist, but couldn't get
one to come to the E.R.  The Paramedics thought it was a panic attack or
stress attack, The E.R. Doctor said it could have been either of those, but
he didn't think so, he thought it may have been a minor stroke.  So, I may
never know what happened that day and may never know, but I don't want
it to happen again, it scared me to death.

I have what I call "black outs" but could be termed "on/off"
Think of your body as running on electricity, someone shuts off your
main breaker (so it's lights out, and you begin to fall), then before you hit
the ground, someone turns the breaker back on (so I can do a
"controlled fall"  I usually have 10 of these incidents a day, but sometimes
even more.  It can happen while standing or sitting.

This is why I asked what is a "flair-up", it's been two months with
these symptoms, I wanted to know what to expect.

Thank you for your time, consideration, and cooperation, I appreciate it.

[supermum_ms]

Hi There,

Your having one hell of a time, I dont think you should think of going back to work if your dropping so many times a day, not unless you wear one of Ellen's sumo costumes so you bounce when ever you drop, sort of like having your own built in airbag :)

I think you might be having a 'relapse' i thought a flair-up was short term (less than 24hrs), caused by things like over heating, someone please correct me if thats wrong. Its a how long is a piece of string answer to how long this will last for you, no one knows for sure, if it lasts longer than 24 hours I think thats when its considered a relapse. My last episode (un-named) started in April and went till August, previous ones dont ever go that long i'd say usually 4-6 weeks before i can start getting over it, a few weeks more to get back up to fitness levels prior to it starting.

Try to be kind to your self, your having a bumpy ride but keep your body moving even if all you can do is wiggle a toe on a bad day, stretch those brain cells too, do it as much as you can now dont give in or give up, keep up your personal fight!

Cheers....JJ

[HVAC]

Socrates,
   You have a lot going on.I think you are going have to take it one day at a time for awhile.

I have several friends with similar head injuries and it has taken years for them to recover. They got better a little at a time.

With MS on top your case is complicated.

Be kind to yourself,

Alex

[socrates2k1]

A new symptom began a few weeks ago.

My "heart" feels tired or fatigued, meaning the center of my chest.  I went to my heart doctor, who did an ultrasound of my heart and said it was fine.

This feeling of fatigue is accompanied by difficulty in breathing.

Yes, I know that general fatigue is common with M.S. and I do have that as well, but I'm talking about a specific area, in the center of my chest.

Is this a common "feeling" or symptom with M.S.?
(because if it is, like the general fatigue, I will accept it and go on)

I guess, life with M.S. is a new challenge, each day you may get a new symptom to deal with.

[Quixotic1]

Hi, and a belated welcome to our forum.  You, indeed, will find people on all sides of MS here and they are all willing to help.  You really do have a good understanding of what has happened to you, but you are lost in the great uncertainty that is common when considering MS.

First, I read dyslexically since I developed MS.  I read that you fell like a "old, lawn fart".  I was glad to see that you were retaining your sense of humor.  It is wonderful that you did not break your neck.

Second, Hey, JayHawker!  Me, too!  I was born in Wichita.  Rock! Chalk!

It is common for people's MS to be discovered "incidentally" when the MRI is being done to work up head trauma, headaches, or when MRIs are done for a study but there are no symptoms.  Then, when the lesions are found, and they look like MS, there is the question of whether this is MS, but before the symptoms occurred or is this one of the many diseases that mimic MS.  

The docs, I'm sure have asked you repeatedly if there have been any weird symptoms you have had previously that could have been previous attacks of MS, like odd areas of numbness or tingling that lasted quite a while (more than a day), weakness, visual symptoms, fatigue way beyond any which you have ever had before, dizziness, feeling crummy (official medical term) when overheated, etc.  You have to think way back - decades.

Is there any MS in your family?  There is often, but not always a genetic susceptibility.

Where did you spend the first 15 years of your life?  The farther north you grew up, the more likely MS is.

Then we are stuck with the head injury.  How badly were your church bells rung?  Did you lose consciousness?  While a bad blow to the head can cause problems, the really severe syndromes are usually with trauma bad enough to cause unconsciousness.  If you didn't, then I worry that what you are suffering is a true onset or relapse of MS.

Some of the symptoms you are having are common with concussions, others are far more severe than you would generally see unless there was prolonged coma and real obvious brain damage.  This damage would show up as bruising or bleeding into the brain generally and would NOT look like 12 areas of demyelination.  Have you been seen by a neurosurgeon?  They are usually the specialists who take care of the severe brain injuries.

I wrote a little Health Page (article) for the forum on a brief description of what MS is and described the four types that are seen.  You can read them by clicking on the links and use "Back" to return to this page.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Multiple-Sclerosis-in-General/show/24?cid=36

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Categories-of-MS/show/32?cid=36

When the lesions are seen without symptoms MS cannot really be diagnosed, because the first requirement of MS is that a person has "symptoms suggestive of demyelination".  The docs typically have to wait for symptoms or do repeated MRIs that show progression of the brain disease and make a leap of faith - after they have ruled out the MS look-a-likes.

We have had two people here on the forum who suffered head injuries and had their lesions discovered incidentally.  One in particular was told she likely had MS and really doubted it, but her symptoms began very shortly after the injury.  Many researcher and many patients feel that a head injury appeared to "cause" or, in reality, precipitate the onset of some people's MS.  And head injury is felt to be a risk factor in many studies.

Reading your list of symptoms my gut feeling - remembering that I am not a neurosurgeon nor a neurologist - is that some of your severe head and cognitive symptoms may be part of a post-concussion syndrome, but others, like the urinary problems, constipation, and weakness (and others) may be due to MS.  Urinary problems can be due to damage to any part of the central nervous system, but are most often due to lesions in the spinal cord.  Things that injure or irritate the brain often precipitate relapses (also known as attacks, flares, exacerbations) like fever, infections, trauma (probably).  I wonder if you were an MS time bomb waiting to explode and the trauma did the nasty trick.

Your episodes of backing out and becoming limp sound almost like "narcolepsy with cataplexy".  This is a condition that is seen sometimes in MS.  In narcolepsy, the brain shuts off momentarily (people "fall asleep") but often maintain their body posture. They may just slump if they are seated.  In cataplexy the person suddenly loses all muscle tone and falls - often called drop attacks - but they remain awake.  I don't know if these can be so brief as the episodes you describe.  One of our members, Jules, had this (and I also suspect has MS) and became an expert on the topic.  Anyone seen her lately??  Anyone know how to reach her?  That is something you could talk to your neurologist about.  The other thing that should be done is an EEG to rule out any type of seizure disorder.

The cyst in the middle of your brain that no one may seem concerned about may be the common pineal cyst that a large percentage of people have.

I could go on-and-on, but this is getting lengthy.  The last symptom that you complain about sound a lot lke the symptom known as the MS Hug.  This is due to a lesion in the thoracic spinal cord which causes a spasm of the muscles around the torso and may make breathing difficult.  If this is the case, I cannot see that this could be related in any way to the head injury.

Have you had a complete MRI of the cervical and thoracic spinal cord?  If not this should be done and might go far to separate the question of the Head Injury versus MS. question.  

Yes, every new day with MS is a new amusement ride.

Quix, President and Founder of the organization for people who talk too much:

ON-AND-ON ANON

[Quixotic1]

Bump

Socrates, are you still with us?

[socrates2k1]

As far as MS in my family, my first cousin (female) has MS.

As far as my concussion, think of making yourself a human lawn dart.  I landed head-first on the top of my head and did lose consciousness (momentarily).

I grew up in Indiana near Chicago, and Muncie, Indiana, for the first 16 years.

I had a Neurosurgeon who was contacted by the Trauma team of the hospital, when I had my fall.  When I went on a follow-up with him, he only told me that the degenerative discs in my neck did not need surgery, and washed his hands of me.  I don't believe he had an MRI of my brain to look at.
So, when my symptoms were not dealt with by him, my doctor sent me to a Neurologist.
The Neurologist is the one who ordered the EEG and brain MRI.

I had an EEG, it came up negative no seizures.

I have yet to have a complete MRI of the cervical and thoracic spinal cord.

My next appointment with my Neurologist, for my follow-up is not until October 28th.

The MS Hug, just adds to my overall fatigue, but in the last week the episodes of "black outs" has increased 10 fold.

Let me try to describe it, I get up (to go someplace from a seated position), once standing, I take a step or two, then feel extremely weak, light-headed, and/or faint, my eyes go dark, my knees begin to buckle.  If I'm near a chair (couch, etc.), I try to sit down immediately.  If I'm not near something to sit down on, I simply do a controlled sit.
I will rest their for a few moments, then try to get up and go.  Now days, when I get back
up, I take one or two steps and "black out" once more.  This could happen several times before I get where I'm going, then I either sit down or lay down.

Along with my MS hug, I also have a difficult time breathing.  I have read up on MS, and have found out this is very common.  The weakening of the chest muscles, etc.

I'm in limbo, until the end of the month.

[Note:  A few symptoms have gotten better in the last three months, walking a little more stable (not counting the "black out" episodes), and stuttering (has improved, but word finding has worsened)]

Tasks that have stabilized or continue to worsen include:  cognitive thinking, trying to do tasks with many steps, short term memory troubles (I sometimes fail to remember my own name or freeze when I'm trying to write it.), not getting much sleep (not quite insomnia, but getting there), tremors, flailing (when sleeping), numbness, tingling, difficulty breathing, sudden sharp pains, etc.

I want to thank you for giving me a better understanding.

[Karen99]

Did your neurologist give you instructions that if things worsen to give him a call?  Have you been seen by this neuro just once since your injury?  

I think it is ridiculous, given your symptoms, that an MRI of your entire spine has not been done long ago.  You have had x-rays of the cervical and thoracic areas, right?  

Sorry I'm all questions and no answers.  

[socrates2k1]

My case is even more complicated by the fact the hospital I went to claims there were not many x-rays, CT, Cat Scan, MRI's taken, though they charged my insurance for a lot.  They claim there was no MRI done of my brain.

Mind you though, they were a Trauma Unit working on a "closed head injury" and a severe neck and/or spinal injuries.



They were only looking for concussions and neck (or spine) injuries.

Having said that, the only x-ray I saw from the hospital was of my upper spine.
There they found a compression between the 4th, 5th, and 6th vertebrae.
The Neurosurgeon I saw, after leaving the hospital, said it was degenerative disc disease that I had to have for quite sometime and could not have happened do to the fall.
That Neurosurgeon said since there was no immediate need for surgery (but could be some day), there was nothing more he could do, and I could go back to work anytime.

The Neurologist, I'm currently seeing for my possible (meaning unconfirmed) MS.
I saw this Neurologist on August 17th, he ordered an EEG (performed on August 18th) and MRI (performed on August 19th).  I went for a follow-up for the test results on
August 27th, that's when he told me about the cyst in my brain and the lesions (12-16).
He told my wife, while he showed her the MRI, that He believed this meant I may have MS.  He set me a follow-up appointment for October 28th, they may or may not do an MRI at that time. (meanwhile I was not OK'd to go back to work).  On October 28th,
he will decide what further tests to do, and if I'm able to go back to work.

At this time, if he asked me I would have to say I cannot.  The fatigue, black outs, MS hug (in my chest), cognitive symptoms, etc.

To give you an idea about my Neurologist.
On September 3rd, I had an incident whereby when I was trying to sign my name for my Speech Therapist, suddenly I couldn't write, I kinda froze then I got tremors in my arms, etc,  I called my Dr. office and all they suggested was go to the ER.
The ER did a Cat Scan of my head, but was believe it or not, unable to get a Neurosurgeon to come to the ER.  Therefore, the ER Dr. could not rule out a seizure, anxiety attack or panic attack.  He believed it was something related to my MS, but since he could not get it confirmed, they gave me Valium to take if it happens again.
That gives you an idea of how "concerned" my Neurologist is, with my situation.

[Lulu54]

Your episodes of blacking out, remind me of orthostatic syncope (sudden drop in blood pressure due to change of position).  But I'm not a doctor, so I  may be totally off-base here. Have you had a complete cardio workup as well?  I would really get that done to eliminate cardio/vascular causes for the blackouts.

hang in there - October 27 isn't that far off now.

feel better,
Lulu

[socrates2k1]

My wife called and got my next appointment with my Neurologist moved up,
from October 28th to October 19th.

I have been off work since July 3rd, and have used up all my FMLA and Shared Leave.
I got a letter from my work that said I only have until October 28th to get back to work or they will let me go.

[Note:  My doctor had written a note, that was dated September 26th, that told them I was not able to come back to work for at least 2 months.  That should have bought me until Thanksgiving.]  

So, that is why my wife called and got the appointment moved up.
However, there is no guarantee I will be in any better position to return to work (for reasons stated earlier) by October 28th.

Question, for anyone, has your MS made it so you cannot work?

I don't know what criteria my Neurologist will use to decide yes or no, or whether he will leave it up to me.  When he put me off for 2 months, he told me I was not to go back to work for at least 2 months.  Is this normal procedure for MS?

Thank you for your time, consideration, and cooperation, I appreciate it.

[Deb61]

Hi Socrates,
I think after an injury that you had and the symptoms you've mentioned it would not be unusual for your doctor to have you stay home.  There's not a usual procedure for doctors to order you to stay away from work if they suspect MS.  It's done on a case by case basis.  Someone I knew had to stay home from work because of her ON.  She couldn't drive the car and was experiencing lots of pain.  

Incidently, my sister had something similar happen.  She was at a meeting, when all of a sudden she couldn't stand.  She fell to the ground and suffered a severe injury to her ankle.  To make a long story short, she was diagnosed with MS.  Her MRI showed lesions in the brain stem, and she's not been able to walk since the injury.  

About a year and half later, I was diagnosed with MS.  I have had numerous symptoms of MS for several years, but have never had anything that has caused a severe injury.  My sister has tried Rebif, but the progression of her disease warranted a more aggressive treatment and she started Tysabri about a year or two ago.  She'll be retiring on disability within a few months.  I'm on Copaxone, and in comparison, doing a lot better.  

This is how unpredictable MS is.  It's even unpredictable in the course of the individual person.  I had in my hands a prescription for a wheelchair six months after I started Copaxone.  Walking was extremely difficult and painful.  Three months later, I was able to walk without problems.  

So, your doctor is looking at your symptoms, and making a determination on whether or not it is in your best interest in returning to work.  If you're having these sudden falls this frequently, it's probably not a good idea.  You don't want to have an injury that will keep you from walking altogether.  

I will sometimes have a panic attack with a new symptom.  I started having esophageal spasms.  My food seem to stick in the inside of my esophagus when I swallowed and was extremely painful.  When I swallowed something one time, I had one of these episodes.  I panicked, and came close to blacking out!  Needless to say, it freaked everyone out!  I also get tremors in stressful situations, now that I had the original attack that started them (the original attack my head tremors lasted for about three weeks).  Every time I get stressed out, my head bobbing starts.  

If I get sick or too hot I'll get not only head tremors, but hand tremors.  I also have had episodes where my hand freezes.  For me, it's quite painful.  My muscles in my hand contract really tightly and I can't move them.  I also go through times when I can't grasp something as small as a paper clip without any pain.  

I'm sorry for writing a novel.  Good luck at your appointment Monday.  

Deb