MS diagnosis? suicidal thoughts for therapist

[scaredphysio]

Hello everyone...first time on this site...and first day of possible/likely diagnosis of MS....so forgive me if my mail/brain is slightly muddled.
Up until today my neuro thought i had had a brain infarct/small stroke...he had my scans looked at by other specialists...and they are fairly sure that it isnt a stroke...and it has come to light that i have a 3 small areas of inflammation...(not one area as previously thought)...which might be MS.  Total shock...and im due for lumbar puncture and have been refered to a specialist MS neuro...

My mind is full of questions..my symptoms have been migraines which have now changed to aura's..dizziness...high white cell counts..tripping on stairs at times...very occasionally word finding difficulties...iron for fire...kettle for radiator etc...a lump on my neck which they thought might be leukemia/cancer but which proved to be 'reactive tissue'...to chronic fatigue.  I had one episode of a period of 2 weeks with intense painful headaches lasting a few minutes with a weird taste in my mouth. Only neuro signs are mild increase in reflexes on my left side. I have also now been diagnosed with a slight increased tendency to clott/thrombosis...a thrombophilia screen showed negative V Leiden but lowAPCR 1.7 and im due for further tests.

Any one out there who has had similar symtoms, has just been given a possible diagnosis or can help me adjust to this news..please get in touch...as I feel so so alone.

The problem is that I treat MS patients regularly...and so know what a possible future might hold for me.  In some ways i know too much...but i now realise after reading other threads...how little in some ways i really know...u guys have already taught me some new facts i didnt know.

As for a differential diagnosis...should i be questioning lupus...lyme...ALS...HIV...could any drugs/medications cause inflammation ..  Quix i need yr help...please.

I ignored my symptoms initally as i put it down to stress and thinking that due to my work i was possibly having symptoms of hyperchondria.  In the space of a year...i have been left with possible diagnosis of chronic fatigue..cancer...stroke...and now MS.  Each time i picked myself up and soldiered on.

I took time out for 5 weeks due to the fatigue a year ago...and after a tough last year...had thought that i had put it all behind me and felt really positive.  Then hearing possible stroke diagnosis...rocked me again...and i shared my thoughts with family and friends who were great.  Today...after thinking i was just going for checkup...i have walked away with this news....and know that i cant worry friends and family....and wont/cant share this.  All day...i have had suicidal thoughts...and am so shocked that someone like me could think like this. I keep thinking of all my brave patients...and how strong and supportive i have tried to be for them....and yet cant find that inner strength for myself.  I feel frightened for my son...for me...and right now am not sure where to turn.

So sorry for pouring my heart out like this...scared someone might read this and recognise me...but hope someone might help me...for which i would be truly truly grateful.

Love an alone and grateful friend.

[young at heart]

WHAT YOU WERE FEELING IS VERY NORMAL.READING YOUR SECOND POST YOU SOUND MUCH BETTER.

SEARCHING THE AVENUE OF LYME IS GOOD,THIS WAY YOU TRUELLY KNOW IN YOUR MIND IT HAS BEEN RULED IN OR OUT.

YOUR RIGHT,YOU NEED TO BE KIND TO YOU AND YOUR BODY AND TAKE SOME YOU TIME TO HEAL AND GET YOUR STRENGTH BACK.

DEALING WITH ANY DISEASE IS EMOTIONAL AND LOTS TO ABSORB.REMEMBER YOUR NEVER ALONE,WE ARE HEAR FOR YOU.

WITH A DISEASE AS MS,ITS LIVEABLE AND MANAGEABLE.WE HAVE MS BUT IT DOESN'T HAVE US!!!!!!!!!!!!

T-LYNN

[MCBCON]

The shock of the MS diagnosis is tough one.  But, many here on the forum have dealt with just as you can too.  Some, who are not diagnosed, are waiting to be diagnosecd as it can give them clousure.

The big thing with living with the disease is to learn not be surprised by how it shows up in most everything you do.  The fatigue you were fighting a while back might very well have been a symptom of MS.  Your depression could also be a result of MS as well.

But, now for the good part.  The sunrise is still just as beautiful as it was before.  The chiping sparrows in spring mornings sitll bring there lustful music.  Pancakes/waffles in the morning with maple syrup still fill your belly.  The soft touch of a loved one is still wonderful (in some cases you might need to find the right medication.)  You can still love someone with all your heart and soul.  You can still so something to make difference in someone else's life.  You can have a good marriage and raise children.

[scaredphysio]

Thanku so so much....trust me when i say that yr kinds words,support and stories are the only thing right now getting me through this.  I have decided not to tell friends and family...not yet anyway....and im going to go see my doc...hopefully today.

Those terrible thoughts about not wanting to 'go on'...have lessoned...i would be a liar to say that they have gone completely...but feel awful for worrying anyone out there...especialy if I have brought up sad/painful memories...im so sorry.

I had to tell my boss this morning over the phone...and just broke down...the first time i was able to let my emotons out...dont think he knew what to say or how to handle it...but he was sweet.  After having a completely sleepless night last night..there was no-way that i could have functioned...but felt really guilty about letting my patients... and team down.

I realise now that many of my symptoms are scarily similar to Lyme disease..Two and a half/3? years ago i had a short episode of intensely painful right sided pains in my head..a few times a day..because my mother has cluster headaches...and my migraines had almost disappeared over the years i went to see a neuro.  Thinking back I also had slight trouble on the stairs...and a occasional weird taste in my mouth.. At hospital mild increased reflexes/coordination on my left were found..  I was scheduled for a MRI scan...waiting list 3 months time!  By the time the appointment came...the headaches had disappeared and so (very stupidly B-(.. i didnt go for the scan.  Months later...after bad dose of pheumonia...back to normal...

I now remember that when I started to get really to get really ill...it was after a weeks boiling hot holiday in the mountains in cyprus at my sisters house (2 years ago). I have always had sun sensitivity...and had taken antihistamines to avoid getting hives...which i had forgotten to do so the year before, to my expense.  The day before the last day on my holiday...i developed a whelp like rash literally all over my body..(i had been itching furiously for some days before and even thought i had been bitten by something).  This drove me mad...and i then developed a flu-like illness...stiff joints...and conjunctavitis/red eye which was so incredible painful...i was off work for 2 weeks.  

The next 3 months...i kept getting respiratory infections and the start of debilitating fatigue...which i thought were due to mixing with many patients on the wards.  Three months after my holiday...on christmas day...my mum noticed a swelling on my neck (i rarely wear my long hair up out of work).  I also had a huge lump under my arm.  From this...to blood teats...showing raised white blood cell...also likely possible allergic reaction??!...which the docs didnt understand...follow up..as they were focused on possible diagnosis of cancer/leukemia.  Had biopsy...reactive tissue...kept getting unwell..sent to neuro cons. who said lets just do an MRI to rule out anything..although 'I dont expect to find anything'.  Checked my own results at work...last august...to find report saying likely stroke (im in my mid 30's).  Total shock...Saw locum neuro (who was rubbish)...and have waited months for scans to be reviewed by another cons...feeling very alone...depressed and introverted....New neuro had said it was unlikely 'to be a demylinating condition'.

The last few months...my fatigue...and strength (inner and outer) and sense of humour!! has improved..altho some days...especialy if work very busy...i am absolutely shattered. The only other weird bout of ill-health...was when my son developed measles...i didnt have the antibodies...so was kept off work.  Although i didnt contract measles (the blood tests showed this)...i did develop an extremeIy high temperature...a few halluciations and my body shook all over.  My face and body also had this incredible flushed look...but no obvious measles rash.  I had though been stung by a bee a day before...so maybe its relevant...maybe not.  The last few months I have also had my migraines come back...but this time...migraine WITH aura..sometimes recently just the aura.  My neuro requested a  thrombophilia screen...and i have been diagnosed with an increased risk to clot.  Am still undergoing blood work by haematolgy...and awaiting results.

After reading reports on this site...and messages re info on lyme disease...i am going to ask to have this western blot test.  I know testing for lyme is not 100%...but it amazes me how my other symptoms (which I kind of ignored)..like the whelplike rash...fever...respiratory and allergic reactions?? might be related to lyme...as well as my scan results and neuro symptoms.

I have seen many patients...go through this waiting game...and have always felt an increased affinity for them...especaily after these last two years.  I have seen patients discounted and almost laughed at my docs...when results have come back 'normal'..yet symptoms remain. Due to this...i have always treated the symptoms..no matter what the results showed, or didnt show.  

For now...i need to be kind to myself...not something im really used too...have always tried to put others first...not because im a martyr...but because I really care.  Its time that I use some of this energy...to 'heal' myself...and with support...i hope to climb 'out of the abyss'...and take hope that I will be a better therapist, mother and person...inspite...but also because of this.

Im taking my first small steps....thanku so so much xxx

[funmonkeytoes]

I have been dealing with Multiple Sclerosis and the fall out from that diagnosis for eight and a half years now.  I truly feel for you and know what it is like to think the world might be better off without you.  We tend to measure our value by what we can do or achieve, and when faced with the thought that those things might drastically change is very scary.  

I know that sometimes I feel worthless as a wife and mother - - as a person that lives from her bed at forty years old; but I am not the majority of MS patients, and I am still important regardless of my physical deterioration.  I am loved, YOU are loved.......remeber that, then take it one day at a time.  You have come across a place where there is a wealth of information and an endless supply of support.  We are here for you.  

Please keep us all posted about your physical and emotional changes and any test results or findings you'd like to share.  One day at a time it will get sorted out.  Don't hesitate to share your feelings no matter how ugly they seem.  I have been in a similar place emotionally, and I have great empathy for you.    

Welcome, welcome......and know you have discovered a family here to listen and understand.

Love & Light,
Funmonkeytoes (Debra)

[santana8]

Hi, I too am still not dx yet. It has been two years since I had a sudden onset of vision disturbance in a store. I  had a medication change six weeks before this onset. I was jerked off of Zoloft and Xanax that I had been on for 14 years and switched to Paroxetine(generic Paxil) without a taper. I at first believed it was the medication switch or the Paroxetine since it has a lot of vision side effects that I didn't know about prior to starting it. It started with distorted vision, could see the numbers on the prices but couldn't figure out what they were. Then straight things started to look curved, things looked wider or blown out to the right. Then  photophobia( light sensitivity), this is the point when I called the doctor who switched my meds. He said it is unheard of after six weeks on the medicine and raised the dose from 30mg to 40mg instead of taking me off of it. I decided to go to another doctor, but had to wait for an apointment. So I stopped the Paroxetine myself,(bad move), but I was left unsupervised and ignored by this doctor and I was afraid to take anymore of it. Within a week I became sevierly  depressed and my anxiety was off the charts, I was on the Zoloft a long time and I found out much later that it should have been tapered. While waiting on an apointment with a new doctor I began to have suicidal thoughts, which with 14 years of clinical depression and anxiety disorder, I had never had before. This was completely different than the episodes I had after the births of my three boys. It was so sevier that I couldn't think straight. I ended up in the hospital and after being off all my meds cold turkey for two months I finally made it to the new doctor. He immediatlely put me back on the Zoloft and the xanax. Within three weeks all of the  depression and anxiety symptoms had started to vanish. Everthing got better except for my vision and pressure in my head. I started going to eye doctors for the vision and that took six months to convince them that I couldn't see right because my VA was 20/20. I guess they thought I was crazy because of my history of  being on these medicines. Anyway I finally insisted that one of them give me a visual field test. It showed a inferior harmoneous quadrant defect(1/4 of my vision field was missing). Then the eye doctor said that he had to get me to a neurologist that I may have had a stroke. eight months after this attack I had an MRI of the brain that showed about 10 white matter lesions. First neuro dx me with MS with just this brain scan and a positive VEP, but he had not even taken a blood test and sent me out of his office with a bag full of Rebiff. I got a second opinion and this neuro is still my doctor. He done the blood work, all negative, spinal tap, negative and has done repeat MRI with and without contrast every six months which have showed no change in the lesions, no enhancement, and no new lesions. So for now my dx is ADEM a monophasic ( one time ) illness without relapes. But he still says after two years that it could still end up being MS or a vascular cause, even though he has stated that he doesn't think that the lesions are from stroke. So I just went to a hematologist this week to be checked for  the blood clotting disorders including factor V and a whole lot more that I don't even know what they are for. I have a family history of a couple of deaths at age 30 from blood clots. I am 41 now and I want to finish raising my boys, so until someone tells me that stroke is definately completely ruled out I won't stop. If these test come back negative in three weeks, my next stop is a reumatologist to rule out Sjogren's and some other conditions that haven't been excluded.

I told you all of this to let you know that I have been right where you are, and I still am. I got through the depression, anxiety, suicidal thoughts and I am slowly recovering some of my vision loss. Did I want to quit during this two years? YES, many times. Do what I did, look at your son and find your reason to push foward because you can make it, I am living proof. I am here to talk or listen or whatever you need, and I just wanted you to know that I do understand!

Santana8

[Quixotic1]

First, If you are truly thinking about killing yourself, stop, call a hotline, or have someone take you to an ER - NOW!!

What is probably going on is that you feel very mortal right now.  I thought about my own end when I realized that things weren't going to get better.  It is natural to do so because you have just had a possibly crippling disease suggested to you.  But, the suggestion doesn't change that you already knew something was wrong.  And the majority of MS patients just continue with their lives with a few interruptions.  You know it is not a death sentence, and the small minority end up in a wheelchair permanently.

Your son will still have his mommy, and you will live to enjoy your grandkids.  Part of the next phase of the work up will be looking for all the mimics that can cause your symptoms and the brain lesions.  You already may have one of them with the finding of a hypercoagulable tendency.  Maybe that is really it.

Don't be mesmerized by the apparent strength of the people you see with MS.  In many cases it is just a matter of making it through each day.  The same thing you would do it you broke your leg.  Just keep in mind that right now you're dealing with the thought of an altered future.  The first night's sleep is the most important.  Stay with us, we'll help answer your questions as the diagnostic work up takes better form.  Sometimes, finding out what you definitely have going on is more liberating than getting diagnoses that don't seem true.

Also remember that the people you see and work with are likely on the worse end of the spectrum.  The one's that don't need therapy and that don't hang around every day on an MS forum (the majority) are out living their fairly normal lives.  Yes, being in the medical field we see a skewed view of what MS can be.

Continually "soldiering on" can also be draining.  But, you made it through those things, especially a cancer scare, you'll handle this the same way.  If the thoughts which you call "suicidal" are really of hurting yourself - talk to someone tonight.  If they are thoughts about what your life will turn out like - welcome to our world.  

And, you get a special honorary membership in our Greek House, Hypo Gamma Chondria for ever wondering if you were just squirrelly and a hypochondriac!!  Welcome to the Club!

You're among friends here and people that have gone through and are currently going through exactly what you are.  Heck, you seem real normal to me!

A Big ((HUG)),

Quix

[JonM]

When I was first diagnosed I went through greif and I think most people do.  Its normal and believe you me there is alot of good life ahead (if it is MS) once you adjust.

You should report to your physician your high anxiety. That is treatable.  I was so miserable for the first few days I could hardly move, could not complete a simple thought in my mind.  Yes I did think "Why live on" and "I don't want to live this way".  Fortunatetly my wife called my regular doctor and he prescribed some Xanax.  Oh what a difference, within one day that all ended.  Sure I was still going through the greif but not paralyzed or having those morbid thoughts.  I took the Xanax for 3-4 months in a relative low dose (.5mg) which got me past that.

So do yourself and those kids some good and call your doc, call NOW.  Don't be afriad to let your emotions out.  And hey relax, MS isn't as bad as you might think, and besides you're not sure what you have anyway.

Jon

[young at heart]

WELCOME TO OUR CYBER FAMILY.

YOU HAVE BEEN THROUGH ALOT WITH THE DIFFERENT POSSIBLE DIAGNOSIS.

YOU HAVE SEEN MS PATIENTS THROUGH YOUR WORK,IF THIS INDEED IS ME,REMEMBER IT EFFECTS US ALL DIFFERENTLY AND THIS DISEASE IS MANAGEABLE AND LIVEABLE.

A DIAGNOSIS TO MS CAN BE AN EMOTIONAL ROLLER COASTER AND WHAT YOU ARE FEELING CAN BE A NORMAL , BUT YOU SHOULD TALK TO A CONSELOR JUST TO TALK ABOUT YOUR FEARS AND FEELINGS.

YOU DO HAVE THE STRENGTH,THIS NEWS WAS STICKER SHOCK,YOUR DR. IS COVERING ALL THE BASES AND THATS GREAT.

REMEMBER YOUR NEVER ALONE,WE ARE HERE FOR YOU AND TO HELP YOU WITH THIS.

[debj52]

hi,and welcome ..you have come to a good place and have a little patience:)...(something im short on)..some one will be here to answer or try to this is the best forum for kindness and informative ...so please just hang tight ...and i will say prayers for you...dont think i could have went thru all that...your a very strong person and keep being that way...please take care and big hugz to you...deb