90% chance of MS at age 40 - spinal tap next step

I am joining this forum at the suggestion of Quixotic and after communicating with c-spine patients and related problems, however, it appears that my c-spine disk herniation (3) is secondary to a very probable diagnosis of MS.  Even typing is tiring for me.  That's depressing.  

I have had vertigo for about one year, on and off.  Most recently, my vertigo has returned times 8 weeks.  I thought my eardrum was going to explode and my ENT assured me that my ear was completely fine, but that I was having facial parastesias, later confirmed to be trigeminal neuralgia.  TGN is the worst pain I have ever experienced.  The vertigo continues, and my MRI shows "well over 12 white matter lesions", one being on the lower right of my brain stem and causing left-sided numbness.  I get double vision in my left eye and most recently, blackouts.  

My Neuro examined me for the first time yesterday, after being referred to him from my NeuroSurgeon who follows a stable internal carotid periopthalmic brain aneurysm.  He stated that he wanted to perform and exam prior to reviewing any images or radiology reports to have an unbiased opinion with regard to any diagnosis.  My vertigo was very apparent in the exam.  When closing my eyes and holding my hands out straight in front of me, he said that my left arm dropped about 6-8 inches below the left.  When standing and closing my eyes, he had to catch me.  When walking a straight line, heel to toe, I could not balance, and was caught once again.  Various other tests were performed for reflexes, etc....  He left the room and reviewed my films, knowing only so-far that I had an abnormal MRI reading.  When he returned he explained that I had well over a dozen lesions in the brain, mostly at the joining of the white and grey matter areas, with a very large and oblong lesion in the middle of the white matter.  The concern was that my MRI of one year prior did not show lesions.  Whatever this is, it is rapidly progressing.  I asked what he thought it was and he told me that after the exam and prior to reading my MRI he suspected MS.  After reading the MRI, he further suspected MS.  He is fairly certain (about 90%) that we are dealing with MS (there is also a genetic factor with a cousin recently diagnosed at 25 years old), we however, need to rule out: Lupus, Lyme Disease, HIV (scary), syphillis (syphilis) (even more scary) and I can't even remember what else.  Negative results for these, which are the only diseases he is aware of that would cause scattered white matter lesions, will result in a positive dx for MS.  

I have my spinal tap scheduled on Tuesday.  He said he could do it in the office, but he would have to use a larger needle than they use in the hospital, so I opted for the hospital......  My muscle weakness continues, fatigue is terrible although it is counter-acted by the anxiety and heart palpitations I am having.  

I am a single mother of a 7 year old boy.  Day to day functioning is a challenge.  TGN is debilitating along with the vertigo.  I do not drive unless absolutely necessary and each trip is a nightmare.  My child wants to know why I am sick all the time and don't make time to play outside like we used to.  Depression is beginning to get the best of me.  I have crying fits on the floor, bed, wherever.  Usually in private.  I have no family within 600 miles.  Nightime is lately being spent answering questions on the phone from friends and family, and essentially ignoring my 7 year old who desperately needs my attention.  I am short-tempered and tired.  I don't sit down to eat and have lost 25 pounds in 6 weeks.  The left side of my face is swelling and my left eye shows increased pressure, apparently caused by the TGN.  

I am scared to death and angry at the same time.  I refuse to let this get the best of me, whatever it is, but feel based on past health experiences that fighting this MS, or whatever it ends up being, will be difficult to say the least.  Where do you see the light?  When do you see the light?  I am alone and scared.  I am sure this is MS, but need to wait for the answer.  I don't know how long the tests take, but since they are drawing the CSF at the hospital, as well as blood tests, I would imagine they will run them there which should be faster that sending them out to a lab.  I will continue to read and completely sympathize with all involved in this forum.... but together we can join and reinforce eachother, pray for eachother and encourage and inform eachother.  

Thanks for having me.  

Pamela

[mokibear]

Oh girl I am so sorry that you are having such a hard time. I understand the anger and fear you are feeling. The not knowing is the worst I find. It leaves the imagination to go wild. You are in hard place being a single mom and fighting depression at the same time. But you also show a lot of spunk. Hang on to that. Maybe you could find a church group or counselling group to help you get through this. It must be hard with family so far away. This forum is great, with some really incredible people. Quix is aces!! I wish I could say something really profound right now that would make you feel better, but my mind is not functioning too well at the moment. (or most days for that matterlol) I'm just praying for you to get a diagnosis soon and that they can get you on some treatment that will alleviate some of your symptoms and maybe you can get a little normalacy (is that a word?) in your life again.
My prayers will be you
Moki

[T-lynn]

Welcome to our cyber family,your never alone here.

You have a lot of fight in you,you will over come this.

The waiting game is the hardest and in the  stages of a DX depression is common many of us have been where your at.

Its okay to be angry,I was mad at the world as I first seen what this disease was taking from me,that has passed and I am back to my old self and fight this disease with a fighting positive attitude now.

I'm also a single mother of children ,when I was originally DX'd they were 3,5,6 and 10.now my youngest is 12.Its been a battle,but this disease has made me a stronger person,with limitations on most days.

You will get over this first hump,I promise

What your feeling is normal.

Theres meds that help with the symptoms and theres the disease modifying meds that slow down the progression.

Remember we are here for you.

T

[Johnny Utah]

  Welcome!

  Trigeminal Neuralgia, fun stuff that is. Sorry to hear your having such a rough time of it. I had TN about 3 years ago and have had only one episode since thank god. I thought the left side of my head was going to explode. Sometimes its referred to as the Suicide Disease. If you've ever had it you'd know.

  Whats weird is I get this odd feeling on the side of my head several hours before, just has an odd sensation. I understand that there are treatments but I haven't sought any of them out. Just hoping it doesn't come back!

  OK, so your going in for an LP. Let me give some good advice.

  I hate invasive procedures more than most. I recently had an LP both with and without sedation. I didn't feel a thing differently in either procedure. So if your nervous about it you can ask to be sedated, you still will be awake, but maybe more relaxed.

  Most importantly, if you experience any headache after the procedure, and it can take sometimes up to 36-48 hours but normally shows prior to that get scheduled for a blood patch. Don't fool around and think its just a little headache, it will get much worse.

  When they do an LP they remove fluid and it leaves a void. We all create new CSF daily but sometimes it doesn't flow quickly enough back into that void. It creates an imbalance of pressure and that will cause a headache like you've never had. The blood patch is the same procedure as the LP but instead of taking fluid out they put some of your blood in to fill the void. The headaches stop almost instantly. By the way, you can tell if the headache you have is from the LP. If you lay down and 15-20 minutes later it is gone and then reappears when you stand-up, call your doctor.

  Hang tough, your not in this alone. I'm sure you have friends around you for support and you always have us. This is a support group first and foremost. We share experiences and try to offer what help and support we can.

  MS is not a death sentence, I for one think its going to be a pretty great day every time I wake up (of  course falling asleep is the real issue). I was having my LP done back in Sept and thinking to myself how life sucks sometimes. I only had to look at the guy next to me that was 10 times worse off than me to realize it could be worse, a lot worse. So try to keep a smile on your face, sometimes its not easy, but I bet your 7 year old knows when your smiling and when your not. Give him or her a big hug and think of all the things you have to look forward too, together.

  Please stick around and keep us up to date, and feel free to grab a cup of coffee, sit back, and have a slow chat with some friends. I get the feeling your younger than some of us here, so be warned this is not instant messaging. Its a little slower but gets the job done nicely.

  Johnny

[fishyfish]

Howdy and welcome!  Never worry about pouring your heart out here, we're all very willing listeners and love to give a friendly hug or encouraging words.  We all need them at some point or other.  It must be very difficult right now, you'll be angry and grieving for the things you lost, but keep your chin up and focus on the things you are still able to enjoy.  Your life will change, but it is not over.  It sounds like your diagnosis will be a quick one.  That is a true blessing.  I'm hopeful that you'll be getting on some meds right quick that will help you through this period.  

Please keep us all informed.  We're all rooting for ya.

Fishyfish

[Ramballa]

What a wonderful way to begin the morning with all of your responses.  I appreciate the warm welcome and it makes me see a bit of light knowing that you all are here and in the same type of circumstance.  I am so scared.  My TN is constant.  Unrelenting.  Every day.  It woke me up this morning at 5:14am, so I am short on sleep, emotional, in pain, on meds (I took my 150mg of Lyrica this morning with about 30% relief).  I cannot take the pain.  

Johnny Utah, sounds like you understand the TN, but could you imaging having it every day, all day, at this point today, going on 9 weeks.  I am fortunate to be out of work on workman's comp for a leg injury and the company is being difficult with regard to letting me return.  I guess God works in mysterious ways.  I need this time to get things in order and get a proper dx, so I refuse to fight with them to return to work. The combination of left sided weakness in addition to a severe ankle sprain with torn ligaments and tendons, and resulting neuropathy and RSD (complex regional sympathetic dystrophy?) on the left side, is confusing and hard to deal with.  I walk with a limp like my leg is dragging.  I don't know if this is from the spinal blocks they did for the injury or a consequence of the MS.  

At this point, I have no doubts about my diagnosis, however, will hope for the best.  What is THAT by the way???  HIV, Lyme Disease, something else???????  I have been tested already in the past year for all of the other possibilities due to general overall illness and inability to heal.  When someone around me has a cold, I get and upper respiratory infection, fluid behind the ears, pharyngitis (someone telling me to be quiet?  lol), sometimes pneumonia and usually I then develop the flu.  What one person heals from in a few days to a week takes me literally weeks at a time.  

I am exhausted, yet I cannot sleep, which is very unusual for me.  I am waiting for the Neuro's office to open and am going to ask him to call in something to help me sleep.  I used to use clonazapam.  Maybe that will work.  In the meantime, thank you all for LETTING ME VENT.  I need rest.  But I cannot get it.  I am trying to laugh as much as possible and yesterday after my son told me that he told his Dad that Mommy is sick all the time and laying down and I don't take him outside to play, I TOOK HIM OUTSIDE AND KICKED A HUGE BALL AROUND.  Last thing I need is a custody battle with the accusation that I cannot properly care for my son.  But, isn't that providing security, shelter, food, clothing and love?????  Isn't that OK for now?  Why does it have to be this hard?????????????????  

I am fearful of the test.  The pain.  The possible headaches.  I think I will ask to be sedated.  I am fearful that my ex will take this and use it against me.  My life feels like it is falling apart at the seams.  But, I am still trying to smile.  For my son and for my soul.  Don't forget to try and laugh, guys.  It's the ONLY thing getting me through right now.  Maybe it's part of the acceptance process.... maybe denial.  

I am about 99% sure this is MS.  Anything else will most likely be just as devastating.  I cannot live with this TN pain every day.  I cannot be so medicated that I cannot take care of my son each day.  Sorry. I am venting.  I am ANGRY.  I am sad.  I am worried and confused.  I am alone.  I have church family that sat with me through the neuro visit the other day right after the ER visit that showed increased pressure in my left eye and the ER doc, probably an intern, told my pastor that if I did not go immediately to the Opthamologist, I would GO BLIND within a few hours.  The opthamologist said he was over-reacting.  They gave me IV benadryl, compazine and dilaudid (sp?) in the ER and even though I still had increased pressure in the Opthamologist's office, it was not acute glaucoma as suspected, but I wonder if the benadryl helped decrease the eye pressure prior to her exam.  I am afraid I may go blind in my left eye.  There's so much pressure.  It's terrible pain.  

I'll be quiet now.  Maybe I'll stop and meditate.  Tomorrow's my 40th birthday, and I can't seem to be happy about it.  Seems like life's falling apart.  Thanks for listening.  Thanks for just being here.  I know it's just a computer screen - but I can feel you with me. Thank you all so much........  

Pamela

[Ramballa]

Johnny Utah and fishyfish, your names were included in message above, but the space is too small and it cut them off.  Thanks for listening.

[BondyinOz]

HAPPY 40TH BIRTHDAY for tomorrow :-)   Despite everything that is going on, I hope that you can take some time out from all this to celebrate. I'll be thinking of you!
Mel

[JI Jo]

Morning Pamela,

First thing, yes, we're all here and we're all listening. Though most of us do not know each other in person, we can relate to each others pain, both physically and emotionally.

So welcome to our group and if nothing else, know that you will always have suport here and open ears and virtual ((((HUGS))))

I have an exceedingly low white blood cell count and (maybe Quix can help me with the right term here) the rate at which my blood cells renew themselves is way too low as well. As a result, somone around me sneezes and I have to go to the ER two days later with a bronchial infection, pneumonia, or some other **** they don't  bother to figure out, just dose me up. I'm usually out of commission for a few weeks at the least and it is never pleasant.

My body does not heal well from anything; the birth of my son went from perfectly normal to emergency c-section to suspected sepsis to an overstay in the hospital and IV anti-biotics for a week and a half for us both...my son is almost two and my scar has not fully healed.

We all understand your exhaustion and of course, your fear. There is no easy solution, but here, there is love and support and understanding.

I hope you find your diagnosis soon and can begin a treatment path that will help ease some of your physical pain and lessen your symptoms. Until then focus on building your inner strength (for you and your son) and persevere...it's not the end of the road, but the beginning of a new way of life!

We're all praying for you and you are in our thoughts,

Jo

[fishyfish]

Happy 40th birthday to you!  It only comes along once, so try to enjoy it, if only with a Twinkie and a smile. :)

Don't worry too much about the CSF test.  Some can be bad, but most are okay.  Mine was pretty easy.  You've already had something similar if you had a c-section.  Instead of putting stuff into your back, they just take it out.  Just drink lots of fluids and lots of caffeine that day, and take it easy.

Your son will be fine without outside play every day.  Love is what matters the most, not how many balls get kicked around.  You will just have to adapt...try indoor board games or watching shows together if you're too tired for active play.  Root him on while he plays video games.  You could also invite some of his school buddies to come and play to keep him company outside.  You might be able to sign him up for things like the Boys and Girls club after school or something similar to keep him active.  

Everything is in transition now, but pretty soon things will calm down and your life will get used to the new normal.  Enjoy your birthday, and keep that sense of humor!

Fishyfish

[Johnny Utah]

  40th! Well heres 40 virtual slaps on the bum. I knew you were younger! 40 is easy, 45 OK, 50 and you know your starting to get old. I was retiring from the Air Force and I had kids working for me that weren't even born when I joined.. that makes you feel old.

  Kids love board games, card games, movie time.. anytime spent with a parent is usually good. Don't worry about the ex and what he might or might not try to do. Just don't burn the house down trying to get forty candles on the same cake!

  Age is so meaningless. You are as young as you feel. Maybe I got that wrong, isn't it your as young as the one your feeling..  lol anyway, try to do something special today, take a walk, read a book, maybe treat yourself special.. Relax later with a nice bubble bath and glass of wine.

  Life is a journey, an adventure. What your going through is just part of the journey. There are going to be lots more good times ahead, and maybe some more bad, but everyone here is praying for you, to give you strength and help you through this difficult time.

  OK, over my knee, I called it first!

  Johnny

[sllowe]

Ramballa,

You've gotten some great advice here, and I just wanted to wish you well, and welcome you to the forum too, and I'm glad you found us.

Johnny-
Soldier boys! Always looking to give someone a beat down (only kidding)! Your in the right place Johnny! We all need some of your straight talk! Looks like we've got the perfect mix now, nurturing, educational, humorous, and now. . . . some Utah. BTW - Just wanted to send you a thank you for joining the forum, without some of your words, we might become melingerers (sp?).  You know what I'm saying here, otherwise, we might go TU! I think you'll know you will know what that means.

SL

[Ramballa]

SL, Fishyfish, JlJo and one hilarious Johnny Utah,

Firstly, many thanks for the 40th birthday well-wishes.  Unfortunately, I was admitted to the local hospital on that Friday, the day before the BIG CELEBRATION.  I began with pain behind my left eye which was severe, to say the least and facial swelling, on the left only.  That progressed to complete lack of coordination on the left side of my body only.  I had no strange sensations on the right side whatsoever. I bent on the floor and laid my  head on the floor to beg God for mercy and I was not able to stand after that.  My entire left side lost feeling.  My son saw me taken away in an ambulance, with the paramedics thinking I was having a stroke.  I was admitted to the hospital and have been there until very late last night.  11 days.  

I got a spinal tap for my 40th birthday.  Not so bad.  I must have had a good radiologist.  MS is still a strong concern.  Going to Duke for a MS consult next month.  I have the best Neuro in town.  Aside from the hospitalist trying to kill me while I sat in a hospital bed with no PT, alone, in the corner without any family within 700 miles, my Neuro has proven to be very intelligent and resourceful.  With increased TN, my dose of Lyrica was increased.  I had a very toxic reaction.  I was literally paralized on the left side.  I was diagnosed by the Neuro with a hemiplegic migraine, drug toxicity and related stress.  Nothing to do with MS so far.  Complete coincidence?  I was still given a 5 day IV solumedrol drip.  Lots of narcotics and associated problems.

The problem compounded when I began getting classic migraines in the hospital.  I was given Imitrix.  CONTRAINDICATED IN HEMIPLEGIC MIGRAINE PATIENTS.  Problems compounded again.  The idiot hospitalist couldn't figure out what was wrong, so said there was nothing wrong and told me I was psychotic.  In the hallway.  In addition to telling me that my HIV test came back negative.  THANKS for telling everyone on the hospital floor I had been tested for HIV,.  Thought there were laws about that.  HIPPPA???????  I am on neurontin, baclofin, valium.  I get the MS consult in about 5 weeks at DUKE.  In the meantime, I am home with a wheelchair.  A walker.  A 3-in-1 bedside commode.  Thank God for my Neuro.  He's extremely distressed at my hospital treatment and I believe the hospitalist may be in fear of a lawsuit because since I convinced her I was not psychotic, she has turned around completely.  I, on the other hand, have turned for the worse.  Cannot function.  Using much assistance.  In home-health care and a daughter who has dropped everything to fly here for a week to help with her brother and her mother.

Frustrated.  Sad.  Angry.  But, glad to have you all.......  not the best birthday I have ever had.  But I won't give in.  All hospital records say MS exaserbation.  Referral to Duke for further treatment.  Sounds like the beginning of a mess, but spinal tap came out clear.  For everything.  Oligoclonoal bands, proteins, HIV, Lyme Disease, Lupus......  They say it may be early stage but that this hospitalization has nothing to do with MS.  Thoughts????

Pamela

[Quixotic1]

All I can say, is Oh My!!  What a wealth of things to comment on.  Yes, Imitrex is contraindicated in hemigplegic migraine.  Do they think it caused lasting damage?  I am so sorry.  Even with all the complications, MS still seems possible, no?  About 25% of people have a clear spinal tap at the beginning of the disease.  

Bring the full fury and wrath of whomever and whatever it takes on that hospitalist.  To commit malpractice, then call the patient psychotic and then violate your privacy by even  mentioning HIV in the hall is worthy first of a searing roasting in our weekly bonfire, then a malpractice claim to further sear her hiney, and finally censure by the board of Medical Examiners would be in order.

I have to run.  But will be back later.  Her, have some Ice Cream!  Quix

[Ramballa]

My, oh my..... that's about all I can get out without swearing out loud.  With regard to the Imitrex, I am unsure if this is what caused so much problems, or if it was the fact that she increased my Lyrica at the onset of hospitalization without regard to reading adverse side effects for a drug I was taking at onset of hospitalization.  Either the drug toxicity from the Lyrica or the hemiplegic migraine (which may have been caused by the Lyrica) have had the following remarks from the hospital:  "We are unsure of how long this may last.  It may be days (already ruled out since I am at the 12 day mark), weeks, months, and may possibly be permanant."  My left arm shows improvement which makes me have hope.  My tremors are remarkably terrible, but not as horrific as when I had been left to lay in a hospital bed for 11 days, getting out for PT only THREE times!!!!!!!  Unfortunately, I am left handed, so I get frustrated easily.  Typing seems to be some good OT for the hand ;)

MS is definitely possible,  Actually it is listed on my chart to the degree that all nurses that visited me said they read that I have MS.  I refuse to give in to the DX until I get the expert at Duke to look at me in the end of November (soonest available for non life-threatening disease).  IV methilprednisone 500mg/day X 5days helped..  My Neuro says the lesions do not have anything to do with this hospitalization.  Pure adverse reaction to Lyrica.  Never to take it again.  I don't know who to blame.... the drug company, the negligent and abusive doctor or both.  Before we roast her in teh weekly bonfire, I will promptly cram a very sharp rod up her $#% for treating me in such a terribly unprofessional manner.  I did, by the way, already file a complaint with the Patient Advocate at the hospital.  The $## of a Dr did tell me this looks like early stage MS to most likely develop within the next 5-10-20 years.

Thanks for the ice cream.  I opted for Edy's fat free mint chocolate chip.  In combo with the valium, I had a pretty decent night.  Hope you did as well.  Thanks for all the support.  The laughs.  The advice.  Think it's really worth a lawsuit?  No doubt a HIPPA violation not to mention that in the hallway, with others present, a very good friend of mine was pushing my wheelchair and almost fell on the floor when she "went off" on me.  Witness.  Right?

Back later.  Need some rest.  It's early here in NC.  Still weak from being left in the hospital bed.  Neuro says 3 days in bed leaves you with 50% muscle tone loss.  When he looked at my record, 11 days, he flipped a lid and had a "talk" with the MD who tried to kill me.

I really appreciate the support and having an outlet.  Thanks again.  How are you doing?  Well, I hope.

Pamela

[TonkaSpirit]

I am worried about you.  Did your daughter arrive yet?  I think you could use some family support right now.  We will be here for you too.  Big hugs to you & a shoulder to cry on when needed.  I too will spend a Bday at the hospital tomorrow (my 43rd), having 2 MRIs.  Please let us know if you need us, day or night.
Terrie

[frann]

I want to welcome you too.. i know you have received a warm and encouraging welcome from many of new friends here... may i join them too.

I am sorry you have been through so much in 1 year.. i have also had a horrible year with vertigo and many other symptoms... i am sure it must be much more difficult for you as a single mom and needing to give so much energy to your child... i pray the Lord gives you the strength to do that.

I believe that you have found the right place for encouragement and advice.

Guess it will be a busy day for you, Terrie and I.... we are all having MRI's tomorrow... Ugggh... and the 2 of you have to spend your birthdays there... maybe that will be a good sign... the beginning of answers... i pray we all have that opportunity.

You will be in my prayers.

God bless,
Fran

[fishyfish]

Oh my gosh!!!  What a nightmare for you!  It's just incredible how many terrible things are out there - not only our own bodies throwing monkey wrenches everywhere, but then these wacked-out doctors throwing fuel to the flames!  Maddening!  I'm glad your neuro seems decent so far.  Hold out hope that he'll get it all figured out.  It can sometimes take a long time though, so be ready for the long haul.

I'm glad to hear your daughter is coming home to help out.  That's a real pickle of a situation.  Please take care and best wishes for a quick recovery!

Fishyfish

[Nanners123]

I too welcome you to the forum. I am sorry to hear of all your troubles but glad that you have a great neuro! That is half the battle there. I am sorry that your birthday was not the best. Turning 40 in the hospital arggg! I am 42 today and am blessed to have had a uneventful, calm and peacful day. That will be my prayer for you for your next birthday!!!

You sound like a strong, positive and faith-filled person with hope. Keep up the prayers and we all will do the same for you. Keep the faith.

Regards,
Nancy

[Ramballa]

Thank you to everyone.  Your remarks brought tears to my eyes..... many birthday wishes to Nancy and Terri.  Hopes and strong prayers for clear MRI results to Fran and Terri.

My daughter, Amanda, is here.  It's a blessing, but I feel like a burdon.  I need so much and my emotions are overwhelming.  The PT rep who came to work with me yesterday says my feelings are normal and to go easy on myself.  It's not that easy.  I am used to walking into the kitchen to get or cook food, of walking into the bathroom when I need to use it (walkers don't fit through my bathroom doorways, so I am learning the sideways shuffle), of standing up when I realize I need the phone or a pen.  Writing is an exercize.  Typing is easier and is considered OT for me which gives me the drive....

Interesting that all Dr's and nurses in the hospital have been telling my I am listed as an "MS Exaserbation" and when the PT came to my house yesterday, she says my treatment plan is for MS Exaserbation.  I DON'T HAVE A POSITIVE DX YET AND I AM FRUSTRATED.  Nonetheless, the exercizes are appropriate and the stretching helps the cramped muscles.  Of course, the valium helps, but doesn't give me the drive to get my daughter to do all of what needs to be done without feeling like a royal pain in the $#%.......  I need furniture moved to walk.  I need my son's clothes laid out for the week so I don't need to maneuver as much around the house.  I live on the second floor and am scared to death about my daughter leaving on Sunday.  I know I should take one day at a time, but I am OVERWHELMED....  We need groceries. I  need money.  I have bills to pay.  I feel like a crippled person.....I can't stop crying.  I am going to take a rest.  Back later.  Sorry.

Thansk for listening.  Pamela

[mokibear]

Don't be sorry!! You are going through a very emotional time right now and need to talk. Even if we can't help you in other areas, we can always be here for support.

I'm so sorry that you are having such a rough go of it. I wish I could lift the burden off of you even just a little bit. All you can do is take it one day at a time.  I know it is a cliche but as hard as it is, you must try.Do what you can and don't worry about the rest. I just don't understand why they have not given you a dx when you are being treated as having MS.

I'm not sure how things work where you are for financial support as I'm in Canada, but maybe someone on here  will be able to help you out there.

I will keep you in my prayers

Moki

[Nanners123]

Can you check with any social service agencies in your area for needed support. We have a very awesome crisis center that has many referrals for all kinds of needs. Is 211 active in your area. That is a one stop shop for all kinds of needs. Google it to find out more about it or try calling it and see what happens. How about a local church? I hope you are able to find people in your area that can help with the shopping, other errands, your son, your bills etc.

Perhaps your daughter can look into finding some of this support for you. Good luck and hang in there. I will be praying for you.

Nancy

[fishyfish]

I second what moki and nanners mentioned.  Easy does it, and give yourself time to adjust to a new situation.  Break things up into little bits, and just worry about one thing at a time.  And don't be afraid to ask for help from friends, neighbors, ex-husband, whoever.  

You should try calling your local MS chapter.  They can probably find an advocate for you, or suggest different local agencies that can assist you in your daily business, and longer term.  Even without a diagnosis, I think they will help you out.

Best wishes and find the joy in the little things.

Fishy

[kitlyn]

HI: So very sorry. Its horrible not knowing what things are, I took ill in July of 06 in the summer, went intot rh bathroom to clean, and had the worst  head pressure and rt arm weakness and jaw come on all of a sudden, i thought i was havinga  stroke. This was a biog deal for me. i have no family history of MS  and only thing i had wa sMitral Valve prolpase not bad. I drank smoke and enjoyed life. I went rt to the ER where the couldn;t figure it out, finally went to a neurologist and said my hea dis going to explode i could n;t focus ride ther ein the car was unbearable i couldn;t be hospitalized as i had olya reflex sand could walk..but event hat wa s compromised a few weeks into it , wors eand worse symptoms arose, the neuro was surpirsed to find i ahd two 1.2 and 1.4 cm lesions on both side of brain..w mass affect on the one side the rt. It was horrible, I told my mothe rwhos wayy older than me ..i am 42 this june i was dying and too remember where i put my will.. my husband left his job ina nother state and w e let our condo go and had to move back to my home town and my moms.. thanfully she lives else where.. he wa sfurious he had to lose job.. He is still out of work a yr later, and is older than me. Neuro told me to do the lumbar but then changed his mind and said it was too dangerous as i had to do another MRI that showed spots less prominent and no brain tumor which they couldn;t rule out at first,, and i then lost my husbands health insurance. and had to wait 5 months for a new one to kick in .. it doesn;t cover dr. appts,, its beena nightmare.. I  finally after waiting 5 months to see  an MS guy saw one, he looked a treports and said it may not be MS , but they sayi am atypical to be sure they have to do another MRI of brain w gadilenium , i had chest pain w that weezing so i ahve n;t gone.  I know how bad the head pain and everything else can be, i was an active person, and the one day when i took my two little neices out to store after  finding this and ll the symptoms thought i wa shaving a  stroke iw a ssoo weak.. I was scared to death and went home, i also had rt eye pain and no vision changes,, but could hardly walk, almost passe dout, now i am having trouble swallowing, i know some ERs can be very hard on you,, don;t let it get to you. be persistent and i know how you feel, Let us know and be brave.. i feel so scared too, and this all all new to me. MY husband left me 6 times after they found this, and it broke me down, he claimed he couldnlt handle it. I was so alone,  but thank g for this place and friends.. Peace, love Kit

[meanit]

Hang in there!!!  -I just got into this forum and noticed your first note and all of the responses.  I am not doctor and I don't play  one on TV bust everything you told medicallly---say MS.  Been thru it all with my husband and your story is oh so painfully familiar.  Do not let them do a spinal tap in the doctor's office.  It should be done in a hopital at the very least but I recoomend it be done in radiology with a guided needle---you are in eneough pain already, why add it to it.  Be strong and demand what you want from these doctors--it is okay to firmly get your point across, without being rude, it is okay to push them for the ansers and it is defintely okay to cry.  Attaching a a poem I wrote-some buds out there have already read it----but this is for you today!

A DAY WITHOUT PAIN

A DAY WITHOUT PAIN IS WHAT I WISH FOR YOU,
A DAY WHEN YOUR SMILE IS GENUINE AND TRUE.

A DAY WHEN YOUR LEGS ARE WORKING JUST FINE,
A DAY WHEN YOU HAVE NO MORE MOUNTAINS TO CLIMB.

A DAY WHEN YOU BREATHE THE FRESH AIR WITH EASE,
A DAY WITHOUT WORRY THAT BRINGS YOU TO YOUR KNEES.

A DAY WHEN YOUR LAUGH IS SO LOUD AND CLEAR,
A DAY WHEN A TOUCH WON’T BRING YOU TO TEARS.

A DAY WHEN YOUR MIND IS SHARP AS A TACK,
A DAY WHEN YOU HAVE NO TROUBLE LOOKING BACK.

A DAY WHEN YOU RUN ACROSS THE WARM SAND,
A DAY WHEN YOU DON’T NEED TO HOLD ANYONES HAND.

A DAY WHEN YOUR TROUBLES HAVE ALL MOVED AWAY,
A DAY FULL OF ANSWERS AND HELP HERE TO STAY.

A DAY WHEN YOU STOP SHAKING INSIDE AND OUT,
A DAY YOU LOOK AHEAD WITHOUT FEAR AND DOUBT.

A DAY WHEN YOUR HEAD IS FREE FROM PAIN,
A DAY FULL OF SUNSHINE AND NO MORE RAIN.

A DAY WITHOUT PAIN IS WHAT I WISH FOR YOU,
A DAY FULL OF SKIES THAT ARE NOTHING BUT BLUE.

To no more pain, to no more worry, to no more fear.  To answers, to help and to the future!  I love you Tim-ALWAYS……Amy 5/07  feel free to copy it and hang it up-anyone who needs to give themselves or their loved ones HOPE-take my poem as a gift.  Stay strong Pamela--Love, Meanit

[Ramballa]

meanit - your poem struck a definite cord with me and brought tears to my eyes.  THANK YOU.  

To everyone else in this conversation, thanks to you all as well.  Each story, each bit of encouragement, each prayer and each bit of love and understanding bring hope to me.  I feel like I have found new and genuine friends in you all and I want you to know how much I appreciate it.  Even when I am home alone and unable to walk or function, I can sit here and read.  Type when my left hand allows.  Cry and laugh.  Thanks so much.  

I am working on several leads for help within my community.  Church, social services and some people who I think are friends, but never came through when I was in the hospital for 11 days, so I am about ready to write them off.  I really needed their support and they were not there.....

My daughter leaves tomorrow, which will be difficult, so I may need to talk then.  Actually, I am sure I will need to talk then.  My PT came yesterday and says I am using the walker too much and need to get back in the wheelchair and give myself a break.  I have been known to be stubborn which may be a downfall right now, but I also know that pushing yourself is part of the recovery process.  Maybe if I had not been so mistreated in the hospital I would be able to just lay down and relax, but I am so fired up that I cannot sit still.  It's painful.  Yesterday I felt like I had been run over by a bus.  I fell asleep on the couch and was unable to get up to get to my bedroom.  5 mg of valium every 8 hours on schedule does nothing for me (well, I say that, but it's possible I would be a complete and total mess without it).  The baclofen and neurontin are working OK, but not great and I am becoming anti-medicine after being essentially poisoned in the hospital.

Feeling a little better at moments, terrible at others.  Can someone please be available tomorrow to chat after Amanda leaves.  I am AFRAID.  

Tired and sore.  But trying to remain positive and in control.  (That's the control freak part of me).  Life cannot and will not fall apart now.  I will get through this, with all of you I hope.  My prayers are with each and every one of you.  I would address you all individually, but I have received so much support from you all that I need to address everyone together.  Sorry.  The less typing the better.

Fran and Terri - any news on your MRI yet?????

Thinking of you all

Pamela

[uk2]

I feel for you its great you have had so many replies and these people really know how you feel hun.
Im a mother of three and the hardest thing about all of this is my kids if i was on my own i could curl up and cry and cry which i have done on there school days its the over welming grief almost of a life your never have back of the times your miss, the questions why cant you play mummy or why cant you drive me to school today or come to my play, its the ups and downs of my cruel illness whatever it is that holds you in that ever hopefull place.

Iv just been through more test and one more MRI in Nov and till i get my results iv dedcided to except what i have that i have friends (no family mine died and my husbands are too old to help) my faith id be lost without that my church and my new firends on here. I find it hard to let go of things sometimes and push myself to hard my pride has kept mea prisoner in my own home so iv started to put things in place to help wheelchair, and other practical things so i and my kids dont miss out too much, it still sadens me for the life i used to have but i have to make new plans with this life.
I feel for your ongoing pain and i pray some relief for you and that you will get the help you need and for your fear to be taken away and peace to be in your heart.

Iv been amazes at the help i have gotten from my friends (some not) and the school have gotten involved in getting them there free school meals and just been very understanding, im trying to get a disabled badge and  disability allowance to make my life easier while i wait to hear whats wrong.

It was agood chice not to do it in the doctors office, even though i went to the great teaching hospital in london and was on a ward i taken down to a little medical room/office type place then given my LP by the juinor which took him three attempts before he decided to use a smaller needle!! so lets hope they do use a smaller needle for your LP they drew 4 tubes of fluid off and a blood one too and told me i might have a six week wait for some of the test to come back.

My thoughts and prayers are with you Hun, we all care so much. keep us informed.

Samantha x

[mokibear]

I know you are worried by your daughter leaving, but have faith that everything will work out. I won't be able to be on until the evening but if I get a chance, I will try to come on through the day. I know that others will be on too throughout the day so hang in there. It might help to place a new post with a heading I need to talk or for what ever you are feeling. You are not alone. We will be here for you. I'm sending you a gentle cyber hug right now. Please take care of yourself, rest when you need to.

My prayers are with you


Moki

[Ramballa]

Thanks for the uplifting thoughts.  I had an "episode" last night and was too scared to go back to the hospital given my last 11 day stay that was just under a week ago.  I was standing with my walker in the kitchen and my ears began ringing. I became dizzy and told my daughter  I needed to sit down.  When I sat down, the entire room began spinning and I began feeling very "funny" - that's the best I can explain it.  Srange.  Funny.  I began getting dry heaves and ended up curled up on the bathroom floor spinning and spinning.  Vertigo like I have never had it before.  Heaves.  Spinning....  nothing would stop it.  My daughter and her friend had to carry me to my bed because I could not balance at all.  When I got in my bed, I began projectile vomiting.  I was seeing double.  Then - I simply passed out and asked my daughter to check on me every hour.  She wanted to call 911, but I am too scared to go near that hospital again.  When I woke up today, I felt better.  But, scared.  I don't know what that was, but it was very similar to what happened the day I was admitted to the hospital.

Now, my daughter is gone back to Massachusetts.  They had to have an emergency landing for the smell of smoke on the plane.  Their landing was greeted by fire trucks and ambulances.  Bad day.  I am here with my 7 year old.  Alone.  Feeling lightheaded.  Weak and scared.  I don't know what's wrong.  I plan to call my Neurologist tomorrow.  Anyone have any idea what this sounds like?

Bad day.  Sad.  Overwhelmed.  On another note, my boss, and friend, committed suicide last night by swallowing 100 klonipin (klonopin).  He was my friend. We talked on Friday and he was FINE.  I hurt.  Physically and emotionally.  The stress may be contributing to my condition, whatever it is..... but I can say for sure that my eyesight is being effected.  My eyeballs hurt.  Not a full headed migraine, but eye pressure.  Nausea.  Weakness.  Some is expected, but I have had no improvement in one week and something very wrong last night.  

Advice?  Prayers appreciated.  Especially for the family and friends of Rob Lattimer.  By name if possible.  There are many suffering due to his decision.  I know this is probably not the place to bring this up, but it just goes along with my situation.  It's adding severe emotion and I am alone (adult-wise, anyway)

Tired.  Need rest.  Head hurts.  Muscles are cramping.  Prayers to all......

Pamela

[mikemolly]

You are in my prayers! I hope you can get some rest tonight. I'm so sorry to hear about your friend, and I will include his family and friends in my prayers as well.

When my symptoms first started about six years ago, I lived 650 miles away from my family. My pre-teen, newborn and I were living in PA, and my husband (new hubby-I was a single mom for 8 years)  worked out of the country. After four years of doctors and ER's treating me like I was sub-human, I moved back to NH. That was the best decision I ever made. Now, I'm under the care of a MS neuro Specialist, and they really want to help me.

I'll be praying
Bethany

[Quixotic1]

I am so sorry to hear of the loss of a friend.  What an awful thing to absorb and come to terms with.  

The episode you had last night was a classic attack of acute vertigo.  Given the horrible things you have been through in the last two weeks, I'm not surprised.  It could very well be part of a migraine.  Other possibilities might be a viral inner ear infection, a neurologic symptom of MS, or even an attack of Meniere's disease, but that is less likely.  The episode as you described it is straight out of a textbook, for an attack of vertigo.  Do call your doctor tomorrow about it.  They are horrific, but not as dangerous as they feel.

I would call your chapter of the MS Society (they are in the phone book) and tell them you are being treated as presumed MS, and can they point you to any local services.  After all, it's all over your chart from the hospitalization.

It's 9 pm Pacific time as I post this.  I'll be checking on the forum for another 3 or 4 hours if you are awake and can't sleep.  I can't focus well enough for major medical thought, but I'll be here for support.  I'm thinking about you.  Make sure you are seen soon this week.  Quix

[uk2]

How truely sorry i am for your lost, how sad it is that someone has to take there own life, i woman in our village with two girls three weeks ago jumped off a motar way bridge as she had had enough, noone even knew she was depressed, my best friend tried twice to commit suicide as a cry for help she is thank god on anti depressant and got a phyc nurse and my ex husband (who i dont see anymore) had bi-polar disorder and had tried twice too to commit suicide, its so sad to think that nearly everybody somewhere knows someone who this has effected.

Im so sorry for your episode last night, im not sure on what happened at the hospital that you would not want to go back i must have missed that post.

Quix has answered your questions and im sure it was vertigo, but i also wonder if its to do with the lyrica im on 450mg a day when not in a flare and 525mg a day when in a flare and iv heard increaseing and decreasing the lyrica can cause almose fit like states and extreme sickness, and all what you experienced, everytime i increase my lyrica i get motion sickness and feel dizzy and when i increase my diazapam or reduce it i get mood swings i also feel off if i dont take thema t regular times.

Im so sorry your going through this pain and having to care for your daughter at the same time how i know that feels with three but i do have a husband to help but he works 12 a day 5 days a week to cover my lost of earnings as i cant work.

I hope your ok hun keep us posted, take care

Ill prayer for that mans family and you.

Samantha x

[sllowe]

Bumping this up, to check in on you Pamela - has anything settled down for you? Were you able to get any help. . . .?


SL

[Ramballa]

Thanks for getting involved.  I can relate to being treated "sub-human".  When there's not a clear cut diagnosis, the doctors sometimes treat me like a psych patient, which infuriates me.  Glad to hear you have an MS Neuro specialist and I hope to get a good one when I go to Duke on Nov 30th to the NeuroScience center.  I have already e-mailed the doctor with recent concerns and he has already replied which leaves me with some hope.

Thanks for the prayers for Rob.  Tragic.  Unbelievable, almost surreal.  I keep thinking it must be some mistake, but I think that's part of the denial process.....

Thanks again
Pamela

[Ramballa]

[Ramballa]

[Ramballa]

Sorry,

I am so tired I just am sending blank messages!!!!  First and foremost, thanks to all for the prayers for my boss.  I just can't even think about it tonight.

I had ANOTHER episode today in the presence of my Physical Therapist and then later the home health nurse.  They both called my Neuro and everyone wants me to go the the ER, but I am petrified of the hospital.  The only last resort, which knocked me out (thank the Lord) is a combiniation of compazine and 1000 mg of Tylenol.  My only option now for migraines given the hemiplegic migraine in the hospital.... I was seeing double again today.  Now, I am exhausted from the vomiting, muscle cramping and inability to see straight.  

Today I was supposed to make calls to a malpractice attorney to deal with the toxicity to Lyrica and the subsequent increased dosing; the dosing of imitrex (contraindicated in hemiplegic migraine), being left in the bed for 11 days and only being removed 3 times to walk to the room door and back.  Additionally, the Doc revealing the results of my HIV test from the spinal tap in the hallway (fortunately, NEGATIVE) and for calling me psychiatric in the presence of everyone in the hallway.  On top of that she prescribed Reglan to me and when they came in to dose me with it I had to point out that it is and always has been LISTED AS AN ALLERGY ON MY MEDICAL FILE.

I'll try to get things pulled together tomorrow, which I hope will be free of symptoms.  Social services is unable to help in any way because I have health insurance and they say I am not in the poverty level (what a joke!).  I will call the local chapter for MS society tomorrow and I may have to hand some bills over to my church benevolence fund (how humbling and embarassing).  It is what is is, as the saying goes.  I WILL find a way through this.  It's been a bad week (well about 13 weeks) and my Dad just called to say that he had to put Jake, his 6 year old adorable white lab, to sleep for acute pancreatis (pancreatitis) and liver failure.  WHEN DOES IT END??????


I really appreciate you all.  Johnny Utah, where'd you go?  I'm really worried about my brain and now, the eye pressure and double/blurred vision.  Classic vertigo is fine with me, as long as it doesn't happen again!

Gotta run.

Exhausted.

Pamela