please help..I am obsessed with ms

[sally456]

18 years ago my symptoms started with a bladder problem where i went to many dr.s (urologists, gynocologists, neurologists) no one found anything wrong.  14 years ago went to a nero who thought i might have ms. (mri's were normal), at this point my only symptom was the bladder, but my anxieties brought about a host of sensory symptoms (tingling, numbness, burning). I then went to NYC to see an MS specialist who did a spinal tap and blood work--all normal.  He said I didnt have ms, and it took me months before I started to believe him.  Bladder problem went on until right after I gave birth to my first child.  It waxes and wanes a little now, but most of the time my bladder feels normal. (bladder symptoms were feeling like i had to urinate all the time even after emptying). About 5 years ago I woke up from a deep sleep and my vision was distorted.  THis lasted about 30  seconds, but has other times since. Also, one pupil is larger than the other(they react the same to light) and my vision is streaky when an object moves quickly.(like when i wave my hand in front of my face). i also have many floaters and after-images.  I still think I have ms, i look on this forum all the time and other web sites to read about it. I am obsessed with it like I was years ago.  I am too scared to go back to a neurologist because I couldnt handle the diagnosis.  Physically, I feel fine, I am not limited in my physical abilities at all.  I am on ephexor for this problem as well. Any advice would be greatly appreciated.. thanks for listening.

[Roger Gould, M.D.]

You are a perfect candidate for psychotherapy. Your therapist can help you sort out anxiety symptoms from physical symptoms, and then you will finally get relief from this obsession. Pills are not enough.

[Aruba417]

Hi,

Have you ever seen a therapist or psychiatrist? I know what it's like to obsess over your health. I have been on medication for GAD/Panic Disorder and Obsessive/Compulsive tendencies for a few years now. It has helped me a lot! I know people have different views on medication for mental health, but it's worked in my case. Maybe just a few therapy sessions would help you out. If it's any comfort to you, my dad and my uncle both have MS, and I happen to know for a fact that if a spinal tap AND an MRI shows nothing abnormal, then you DON'T have MS. But people can show you and tell you over and over again, yet you're still afraid...I think seeing a therapist would help you a lot. For a long time I was convinced I had a heart problem because of my panic attacks...sometimes I still worry when I get symptoms...but I am a lot better. I know how it feels, and you can't just "get over it". Sometimes you need help. Good luck and God Bless!!!

[sally456]

Thank you so much Aruba....I just keep thinking that since I had the mris so long ago, that maybe the technology wasnt so great and the lesions didnt show up..or for some with ms, the lesions dont show for years in the beginning.  I dont know why I torture myself with this. Ive been basically ok for 18 years. Ive had some symptoms, but nothing that limits me at all.  My view is that if I do have it, its been mild this far and most likely will remain so.  I cant go back for more testing and more dr.'s..they can really drive you crazy...and all my anxieties will also drive me nuts.  If I do have it then I will find out one day, but only if something really bad happens and I have to go to the hospital../then ill deal with it. I know there are medications now that can slow the progression and stop future damage, but there are controversies over whether or not to take the meds when its mild.  Not knowing the course of the disease dr's are recomminding it to everyone newly diagnosed, but ive had symtoms for years, and im ok without meds. ALso, they could be toxic and there are no long-term studies. Anyway, I have been to therapists, but not long term. I take effexor for depression/anxiety and Im going to start going to a therapist soon. Take care Aruba...and thank you!!!

[Aruba417]

You're very welcome! You know, when I was being tested for everything in the book, the first thing my doctors tested for was MS, since it's in my family. The doctor DID find some spots on the brain, but he said in most people it's actually normal. But I have to go back for my follow-up in a couple months (it's been a year since the MRI) to make sure nothing has changed. He said if nothing has changed, then I am home free. Also, I think MS hits women harder and faster then men, so if you've been okay for 18 years, I'm sure you're fine. My dad has had MS I think for about 18 years, actually...and he's definitely noticed changes...he had to medically retire 5 years ago. But he is on some really good meds that have kept him active and able to function without any obvious disabilities! Plus, there are only 2 kinds of MS that I know of: Relapsing/Remitting, and Progressive. I don't think it would stay dormant for so long. You would have either gotten worse or it would come and go in waves, with each relapse causing more obvious symptoms. Hope this gives you some more comfort!

[sally456]

Well the only thing that has really changed in the past 18 years is the vision thing that occured 5 years ago.  So if I do have it and have only had 2 attacks in 18 years, I guess that is pretty good.. I also noticed that with long-term stress like ive been under for the past 2 mos.  I get alot of tingling and strange sensations in my body.  After a while, when i calm down and stop focusing on it, they go away.  I also have numbness in the tip of one toe that doesnt go away.  Anyway, Im glad your dad is doing okay, good for him.  Im sure your fine too, doesnt sound like you have any ms symptoms.  Take care Aruba and stay healthy!!

[doggies3forme]

Hi.  I am going to tell you two different things.  Maybe it will help you.  I hope so.

About 20 years ago I had someone say something that disturbed me so much that it affected my daily life.  It consumed me for 20 years!  Every minute, every day, every year I thought and thought about it.  I was miserable with fear and sometimes it felt like terror.  I read, I talked to people, I did everything I could imagine to get over it and it would NOT go away. I was suicidal many times, I wanted to die!  I was miserable with fear. Over several years I talked to several therapists and several psychiatrists and they all said that what I feared was not really the problem.  I didn't believe them.  I thought of all the evidence I had, my strong feelings, my fear and thought how could they say that it was not the real problem.  (I don't want to say what it was that I thought in case it would disturb someone else.)

One psychiatrist that I was really honest with and told her what it was that I thought told me it was psychotic.  I didn't believe that either because what I feared I knew other people feared it too except it dictated everything I did in life.  My psychiatrist told me that the extent that it affected my life was psychotic.  So maybe the actual thought was not, but how much it affected my life was.  So she gave me an antipsychotic (I still take Risperdal).  It greatly helped the fear and life was better but I still had the thought.  But through counseling the issue I worried about was not discussed because my psychiatrist told me it was not really the issue.  So instead I talked about childhood, all of the things about growing up, the pain, the hurts, the emotional abuse.  Gradually, over the years it just happened.  The thought got less and less and I hadn't even talked much about it.  I have worked through all of the childhood issues and I don't have the fear or the thought any more.  So it took medicine and therapy.  This may not all make sense, but there was nothing in my life that made me suffer more but now I am free.  Why don't you give it a try.

I hope this helps you and try to be open to trying something new.  You have suffered all these years and even if it doesn't seem right to you, it just might be the end of your suffering.

If you want to email me my address is ***@****

Good luck to you.

[doggies3forme]

I knew there was a second thing I wanted to tell you.  Sometimes people experience physical symptoms nder extreme stress.  My psychiatrist told me about a woman who actually became paralyzed herself because she was the caretaker for two family members and she felt overwhelmed.  Once she learned why it had happened she wasn't paralyzed any more.  Also, there was a person who learned from her doctor that she was going to be blind some day, became blind immediately because she was so terrified.  It took therapy to help her get her sight back.  I am sure you could find more stories if you looked.  Try to have faith in a therapist and see what happens.

[sally456]

Thanks for your help..  I really appreciate it.  It does consume my life.  Even when I think its not really bothering me, I know that it is.  Also, I know that problems from my childhood..my dad leaving and moving across country to Las Vegas...has affected me as well.  It also affects me because I start thinking that Im very unlucky, that who would want to be friends with someone as unlucky as I am and I withdrawl from many things, like friends and life in general. I just have so many physical symptoms of ms that it scares me.  I go in cycles though obsessing about it.  Right now Im really bad because some other tragic event happened in my life and I just dont want to have to deal with it, so I am focusig all my time and energy on ms.  Im reading all i can about it, taking vitamins to help me in case I do have it.  But I will not go to a neurologist because I am too scared of being "labeld" with ms.    Anyway, I started real estate school to keep busy and get my mind of things..it helps some...I have to call back a therapist I found and scedule an appointment with her asap.  I think I need to up my effexor dosage as well..good talking to you.

[doggies3forme]

That is exactly what I did about the "thing" that bothered me.  I thought of it every minute.  I would wake up with a start!!! in the morning.  I would actually gasp as I opened my eyes and realized I was alive and still had that problem.  Believe me, I know what suffering it is and I almost took my life a number of times.  

I always thought "it" was the problem.  Even when something  bad happened I didn't think it was the problem, I thought "it" was the problem.  Everything paled in comparison to what bothered me.  Every professional mental health provider told me that it was not the problem.  Once when I lost my therapist and was trying to find another (actually it was my psychiatrist) she mentioned my problem to her psychiatrist actually thinking that I could see him too, and he said "it" was not the real problem.  So you see, I took the medicine to be able to calm down enought to work in therapy.  Then I worked in therapy on OTHER things and it all worked out.  I see now that my anxiety and fear were all the fears and pains and hurts that happened growing up.

I know it doesn't sound like it would help what you worry about but you would be amazing.  I think I always focused on "it" instead of what was really hurting me, past or present (at the time).  I am totally free of it today.  I do still take the meds but it is not an issue with me anymore.  What used to terrify me and almost cost me my life, what hounded me every minute of every day, the torture, misery, is gone.

I wish you the best.  I know that you addd things up in your mind and say yes, MS has to be so with me.  You did the right thing by being checked out and the doctors have told you you don't have it.  I am not a doctor but I don't think it is hard to diagnose MS.  They would KNOW by now.

  
Do whatever you can do NOW.  Don't suffer 20 years like I did.  I wish I had those years to live again.  I feel they were robbed.  But now I am free to live my life without fear.  I am so thankful and I know the same can happen for you.  See a psychiatrist because he/she can prescribe medication.  Sometimes when things are too scary to deal with, you can't really concentrate on your issues.

Good luck to you.  I've been there.....

[sally456]

doggies3--i emailed you directly....

[Aruba417]

You have really good advice. I hope more people read your post and find comfort in it. I know sometimes we wonder why we suffer the way we do, but if it's of any comfort to you, I think a lot of people who read this post will get the help they need. I feel like I wasted a lot of my life worrying, too. But thank God I found the help I needed also. It's an on-going healing process. Good luck and God Bless. I am so happy you're feeling better. I wouldn't wish this obsessive worrying and symptoms we get on anyone!

[SteveIT]

It wouldn't hurt to go to an opthamologist.

Floaters and the vision changes you describe can be symptoms of something called posterior vitreous detatchment. Basically, the fibers of the jello-like substance that fills your eyeball get detached from the retina in a few spaces. You see these loose fibers as floaters (many of which go away over time, because they float out of your field of vision). And your retina gets a little weirded out by the change, giving you a few odd quirks in vision like the one you describe. Important thing: It's a natural part of getting older. Happens to some people in their thirties, others in their fifties, but everybody gets it at some time.

[sally456]

thanks steve, i appreciate it.
I just get so consumed with my health that I withdrawl from friends and others because I think that If I am sick then who would want to be friends with me..Also I guess that I have low self esteem...but its mainly because of the health reasons.
that i have or dont have. I dont know why but i just feel unlucky..and why would people want to be with an unlucky unhealthy person.

[doggies3forme]

I liked your answer to me.  I wondered all the years, why in the world I suffered.  If I can help even one person I would be so happy.  No one could understand the severity and the all consuming power of something we think and cannot break away from.  I definitely would like to know it helped someone. I am glad you are doing well regarding it.  When I first had mine, or several years really, I did not know there was another person in the world who felt like I did and it was torture thinking I was the only one.  I felt like I was doomed from God forever because I felt such fear and it wouldn't leave.  I thought I had done something horribly wrong.

[Jenny Wren]

I'm new here, but won't be probably after today.  Sally, you are not the only one obsessed with ms.  I've been having alot of the same symptoms as you are.  I've been having them for 5 years now.  But I'm to scared to have an MRI done in fear that it will come back positive.  My problems all started 5 years ago after having a terrible anxiety attack, it scared me so bad, I was so sick for months.  I lost around 20 lbs.  Was scared to stay by myself, didn't care at that time about anything but myself and how terrible I felt.  My doctor put me on Prozac.  Seemed to be working very well.  While my husband and I was working on our new home one day, I decided to walk down to my mothers house.  I stepped right in one of our perk test holes, and hurt my lower back and tailbone.  I decided to go to the chiropractor.  He took no x-rays and started wrenching me and pushing very hard on my back.  Ok on first visit.  2nd visit I told him that I get this funny sensation in the left side of my face sometimes.  He looked at me and said, "Does anyone in your family have ms?"  I said, yes, my grandmother.  I think that's what you have.  That's all it took. I left there that day and by the time I got home (2miles)
My hands were itching, my but cheeks, my face was tingling, my legs were burning like someone rubbed bengay on them.  This lasted for around 2 months.  I have never had any testing done because I am so scared, plus do not have insurance.  To this day it is on my mind 24/7.  I feel like their is bugs crawling everywhere under my skin.  Your not the only person that feels this way, believe me.  Talk later.

[sally456]

Thanks for answereing me...i appreciate it so much.  Im glad to know im not the only one..I posted some other stuff on the mentle health forum.  I was tested so many yeara ago and the ms specialist said i didnt have it but i still thought i did.  It took my years to get over that, but then every so often i would think of it again. Now, Im back to thinking about it more than ever.  Im goign to go to a therapist to help me.  I have had alot of anxiety right now from marital issues, so after i had been very stressed for about a month, i started having the buring, tingling, things crawling under my skin sensations, even itching like crazy.  I am not going back to a neurologist at this point..i just cant. Anyway, i have a frined whose mom has had ms for 40 years...shes doing very well..she had a mild disease all her life..her biggest problem has been to catheterise herself...but thats better than ending up in a wheel chair or worse. anyway, it would be nice to talk to you about this...im taking effexor now for my depression and i hope to get into therapy soon...please write back when you can and let me know how u r doing with everything..what exactly are your symptoms???? im 39 and female..my symptoms started when i was 21. i live in nj, usa

[Jenny Wren]

Hi Sally,  My symptoms are the same as yours.  Burning, buggy feelings (not a tingling like a limb asleep), sometimes feels like cold water on my skin.  Never numbness.  When that happens I'll definently be a basket case.  Mine all started about 5 years ago.  I would have been 29 then.  I always wonder if it's not hormone related, because my periods have changed, and for about 7 years now I've been getting menstrual migraines.  My grandmother had ms, but wasn't diagnosed until she was 60 years old, only after complaints of 3 years.  My grandmother passed away 3 years ago this August, boy do I miss her.  She called me Jenny Wren.  She also went through menopause when she was only 39 years old.  Nothing tramatic caused it.  I started having anxiety attacks around 5 years ago also, then I started looking things up on anxiety.  Did a search on the internet (big mistake) for nausea.  Guess what came up?  you guessed.  MS.
That was the downfall for me, I searched deeper and deeper, and at that time had no symptoms.  The more I thought about it the worse it got.  I started with the buggy feelings in my face, then my legs, my arms, everywhere!  I have had this thought on my mind for the last 5 years, every day of my life has been torture.  Everyone thinks I'm nuts.  Probably am.  I guess with all the stuff I've been through with this, by now I think there would be more signs.  Hopefully.  Jenny Wren

[Jenny Wren]

Oh forgot to say.  When I'm busy working I don't have any of these feelings.  Weird, I guess it's called mind over matter.  My feelings are alot worse around mid cycle (head feels like bugs crawling, if I don't have that feeling then it is replaced with a migraine) and right after my period starts, bluh, almost every month I have the headache.  It sucks being a woman. Ha Ha

[sally456]

Hi Jenny...Are you sure your grandmother had ms?? She was diagnosed at such an older age...Usually its much  younger than that when you are diagnosed..It sounds to me like you have alot of anxiety and maybe you should see a psychologist who can help you with it.  You have symptoms that yeah, if you did a search ms might come up, but you have nothing that resembles an attack of ms or anything like i have.. vision or bladder problems that could also be directly related.  Also, you notice when you are kept busy by working you dont have symptoms...Do you have fatigue?? I do...I never seem to wake up feeling refreshed in the morning.. I could probably just keep on sleeping if i didnt have to get up for the kids....Just stop reading about it, and going on the internet and looking things up..it only makes things worse. I know that when i get really stressed for a  long period of time, i start getting symptoms...the problem is that ms is somehow related to stress too, so i dont know if its the actual stress causing the symptoms or if its ms causing them. I just have to hope that if i do have it, its mild and will stay that way.  But then i also think that if i have it and dont get diagnosed than what if it gets worse and i could have done something about it by going on meds to help slow it down?? My husband is no support because he thinks i dont have it and should not go to a dr. Sometimes I feel that if he could just say..look, Im here for you whatever happens, I will go to the dr. with you whenever you need to go, i will be right there for you,,, and whatever has to be done we will do it together.
You will be fine. OH well...Oh  I also have the feeling that when i cross my legs my feet fall asleep rather quickly, and also i used to have the same thing happen to my hands/arms at night in bed....Im doomed....please write back when you can..thanks.

[Jenny Wren]

Hello Sally.  My grandmother was diagnosed only after having symptoms for 3 years.  When she would move her left arm a certain way it would send electriclike shocks up her arm.  Then it would go numb, sometimes it would last 15 minutes sometimes longer.  Eventually her fingers started going numb, and stayed that way.  She first didn't realize it until one day she was using grass shears and cut the skin between her thumb and index finger and she seen the blood and didn't even feel the shears cut her.  About 12 years into this, she started having weakness in her left leg, eventually dragging it.  She always said I'm not going in a wheelchair.  The last year that she was living 2002-2003 she was very, very fatiqued.  She never had bladder issues ever.  But did have bowel problems earlier in the disease.  She drank prune juice ever day, this helped with that issue.  She thought she was so drained because of the ms, so she asked her neuro for something, can't remember at this time what it was.  She started taking that and after about 1 week, she had a slight heart attack.  Ended up having double bypass surgery, no heart-lung machine, used veins from her lung lining,
came through great, that was Thur., Sun, morning got a call at 5 a.m. said that she went into cardiac arrest and she passed away.  The last day that I seen her was before she went into surgery.  She asked me why I was crying, I said, Mum, I just want you to be ok.  She replied, Jenny Wren, it's in god's hands now. Life is sometimes so cruel.  Everyone person is different with ms.  Do you have numbness?  Does your face ever feel buggy?  My grandmother never had a headache a day in her life, No facial tingling, no vision problem, just numbness on the left side (arm and leg)and fatique but only later in the disease.  Oh forgot to mention,  could not tolerate hot baths or showers, she said it would make her feel like a rag doll.  Never complained about the heat in the summer, went to Florida every year and went to the beach, sat right in the sun. No problem.  By the way, Her neurologist, said that this is not called ms in older people, they call it demylenation
disease, but same symptoms. Forgot to say, diagnosed with Parkinson's Disease also just 6 months before she died.

[Aruba417]

My dad was diagnosed in his mid 20s, and my uncle was diagnosed a couple years ago at age 30. And I'm due for my follow-up appointment with my neurologist for a new MRI. The last MRI showed spots that were so small he couldn't tell what they were, IF they were anything. But because of my family history he wanted to be sure. So I'm still waiting that out. But I wanted to point out that if an MRI doesn't show ANY LESIONS on your brain, then you DON'T have MS. And also, even if any of us ARE diagnosed with it, it's not as scary as being diagnosed with cancer, or ALS. It is easily treated nowadays. Both my dad and my uncle have been doing pretty well. My dad has his days, but for having the disease since for like 18 years, he's doing very well. Also, a spinal tap would also show abnormalities that could point to MS. If both of those tests come out normal, you are fine. And trust me, I am a person that worries about her own health all the time, so I know how you guys feel. I just want you to feel 100% better KNOWING how it's diagnosed and that if it is anything, it will be caught in an MRI or spinal tap! Good luck to you and God bless!

[sally456]

thank you aruba and good luck to you too!!
Do you currently have symptoms?? What medication is your dad on?
how old is he? Im glad that he is basically doing well..i have to say that for 18 years..if i do have it..i really havent had "bad days". I have felt normal most of the time... i have vision problems that dont go away, but i am so used to them, they dont bother me unless i concentrate on them all the time.
Aruba, have i asked you where you live, and your age?? I forget...Ive talked to quite a few people on here, trying to find some friends i guess who feel like me...
Talk to ya soon..and thanks for your encouraging words!!

[Aruba417]

Hi Sally. My symptoms were tingling in face/arms, and even in my eyeball (I know that sounds weird!). I still get them every so often, but not too bad. I'd get tingling in my legs every so often, too. I also get weird cramps above my left breast and I get heart palpitations, which is why I was so obsessed with thinking I have a heart problem. But since so far they've ruled everything physical out, I've been treated for GAD/Panic Disorder with OCD tendencies. As far as vision problems, I've had them for a long time, and I wear contacts. I have floaters but the doctors say it's unrelated and to just deal with them. I cant remember whether my dad is on Rebif or Copaxone. He was on one or the other, and then had to switch to the other one because one of the meds was too hard on his liver. But I can't remember which was which. He is also taking Provigil for his fatigue. I'm in Arizona and I'm 25. Take care!

[sally456]

hi aruba....

[sally456]

hi aruba....Ive had tingling in the eyeball too...
and lately ive been noticeing i get out of breathe without really exerting myself..i didnt even notice it unitl someone mentioned it to me...
It doesnt sound like you have many symptoms...so you'll be fine..it does sound like anxiety to me...so take of yourself too!!

[Tiredofthis84]

I have a very unusual story and I am curious if anyone else has something similar.  I am 21 and kind of young from what I have heard to have MS. 3 years ago I had an MRI after getting headaches following an accident.  They found lesions and they looked similar to the MS kind.  I have never had any symptoms of MS.  Well my neurologist sent me to get some tests done (eye, reflex) and they came out clean.  So he said he really didn’t think I had it but the only way to know 100% was to get a spinal tap.  Well I decided to go ahead with it just so I wouldn’t wonder forever.  (My aunt has MS).  Well, I did it and found out that I do indeed have MS.  I was shocked. So there I was in the most unusual situation for my neurologist.  He wasn’t sure what to do with me so he said he suggests I take rebif to slow the progression down and hopefully never have symptoms.  It is pretty traumatic for me to give myself injections and I keep wondering if I should continue.  Do you or anyone you know have a situation like this?

[tamrz]

I am also experiencing an obsession with the possibility of having MS. I have had the MRI which did show lesions but this was 10 years ago and they said the only way to tell for sure was to have the spinal tap. Well I was scared and decided at the time 10 years ago not to do it. Now after the years of all the different symptoms which have caused me to have a generalized anxiety disorder - maybe I shoulod have just done it. It has made my nerves worse by not knowing if it's MS or something else. When I wake in the middle of the nite, I sometimes get this electric buzz in my head for just a second. This happens a few times but only upon waking. I also get these electric shaking sensation/dizzy spells out of the blue which then leaves me lightheaded on and off for a few days. That triggers my anxiety and then here we go off and running! I have decided to get the spinal after all this time because I am sick of worrying. After all - There are worse things out there than MS. We have to Float, pass and accept whatever comes our way. m. Funny - I have never had allot of the symptoms I read about, numbness, tingling, facial paralysis. I have sudden weakness for no reason, and I am fatiqued. This forum is very helpful, Good Luck, Tammy

[ncarter123]

hey, after reading your stories i thought i'd chip in as i've been struggling for a few months now. I'm 17, female, and back in October starting getting a slight left hand tremor with headaches and nausea etc. I'm a bit of a hypochondriac so my immediate thought was that i had a brain tumour which freaked me out but my GP assured me i didn't and that it was probably stress related. Referred me to a neuro anyway as i was worried. Like many of you, i googled my symptoms and came up with ms, and since then its really been downhill with countless symptoms going on.

I saw the neuro who could find nothing wrong neurologically and recently got the results of an mri of brain and c-spine. The letter said the 'mri of the brain was normal and the c-spine showed no significant abnormalities either. The conclusion is that this was a normal study.' That freaked me out slightly as it makes it sound like theres something a bit weird about my C-spine. What dya all reckon? Anyway, sorry to write an essay, i just wanted to ask if any of you get what is one of my current symptoms. My legs feel really weak and my calf muscles shake quite a lot after mild exercise. I recently started going back to the gym and have been quite out of shape but my legs feel really weak. I never fall over or anything though, could this be anxiety? Also, my hands and feet are very buzzy/tingly, anyone experienced anything similar?

If you've read all this, thanks very much! Sorry about the length. Also, to Sally, as you've said yourself if you've had stuff going on for 18 years and it hasn't got any worse  
then the chances of ms are tiny, and if it was ms (which really seems very unlikely) then its the benign kind so you've got nothing to worry about! Then again, i'm being a hypocrite as countless people have told me not to worry about ms but i still do on a daily basis.

Any input or advice on how to quit worrying about this would be great and much appreciated. I have some major exams coming up and really need to focus on that rather than constantly thinking bout ms.