1312898 tn?1314568133


I have wanted to reach out to all of you for a while-----this is sort of long but hope you can lend an ear if you can.  

Some of you know that I have fallen twice on the steps to my sisters house.  She became enraged when I told her about the falls.  I landed on her mums once and then on some flowers the other time.  Well, last night when she let her dogs out she fell down the same steps.  She broke something in her ankle.  

Instead of trying to reach me in the out building she called her daughter to come get her.  Her youngest child came home at 10:30am and asked me to pack a bag for her.  That was the first I knew of this.  She told him she “didn’t want to come home because there were too many hazards”

A few minutes later

My O.T. came.  She mentioned that my medical chart said I have PPMS and then reports tests that were contradictory of that diagnosis. She said, “I am wondering if maybe you don’t have PPMS but have Chronic Inflammatory Disease”.  She related further that my obesity, environment, depression and diet could be to blame.  Also, people who were sexually abused as children had double the possibility of getting CID.   I am totally screwed.

I was very assertive and told her that this topic was a trigger for me.  We talked it out.

Then, last week, my general neurologist  remarked “you are from California so maybe you don’t have MS…… the sun shines there all the time….you don’t want to have MS anyway”.   I didn’t have it in me to fight or tell her that San Francisco typically has fog between the city and the sky.

Which brings me to how I feel.  I am not going to have any more medical tests or clinical exams.  I am not going to talk to doctors again.  I am only going to seek help for my pain.  

You know how powerful a womans intuition is right?  Well I feel like I am dying.  I have had two major surgeries in my life, what I feel is much much much worse than that.  Surgery is a breeze.  Even though my meds have been tripled I don’t get better, I have days where the pain is less certainly, but the level of disability remains.  I know it sounds dramatic and helpless, it’s just a gut feeling.

A dear friend of mine came to me and told me she was dying, she knew, she was gone in 14 months.

In the end it doesn’t matter what it is called, PPMS, CID, or whatever the flavor of  the day is.  Treatment is the same----pain medicine

Do you guys feel that way too?  Am I just a person that isn’t trying hard enough?  Am I a hypochondriac?

36 Responses
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293157 tn?1285873439
Hi there, sorry to hear your going through all this.  You don't need to hear anymore comments about what it IS?  

I understand abit about what your going through and it's not a nice place to be.  I hope your intuition isn't right!!!  

Do you have a GP that you can talk too about how your feeling?  I have pain almost daily and my left side does not improve at all.  

remember you have friends here and you can chat anytime.. feel better soon and take some time off from Dr if that's how you feel.  Keep records of how your feeling though.

Hang in there
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Avatar universal
I have come to realize that MS is such a horrible disease.  Sometimes, it isn't the MS itself that can be so bad; it's the junk of having to deal with Dr.'s who don't know what you have, yet, they make you feel like a hypochondriac because you have symptoms to which there is no answer.  Also, having to justify to anybody and everybody that you can't do certain things because your body doesn't allow you to do things.  Attempting to get SS disability is a pain in the behind because even though they look at all your medical documentation and see the medical problems you have, they say you're not disabled.  

Having MS means that you have to FIGHT with every ounce of intestinal fortitude that you have.  I'm going to be honest with you.....I don't have any fight left in me!!!  I'm so depressed and so discouraged.  I think I can deal with the pain and symptoms from MS alot easier than I can deal with all the junk that comes from having this disease.  I sympathize with you 100% and truly understand what you are saying.  

I feel so bad for all of those with MS who are having to fight!
Helpful - 0
667078 tn?1316000935
There are lots of illnesses which are hard to diagnose or give a name to but they are real and the pain is real. I am fairly healthy but find navigating the health care system very hard.

This latest attack of what I am still not sure is a good example. It was very real. Those who saw it and the aftermath do not doubt it but was it simply thyroid or MS? May be we will never know. Sometimes I think it unfair especially last Wednesday to deal with all these illnesses which do not kill me but make my life hard.

Taking the best care of myself is the most important thing. Humor is the second. Third is family and friends. Forth my pets.

I live in the moment. When I am in pain I say I will not be in pain forever. When I am depressed I say I will not be depressed forever. Distraction is the name of the game. I do not feel pain or depression when I am busy.

I do not feel great now but I am happy.


Helpful - 0
1218873 tn?1300091216
I feel I may understand just a bit of what you are feeling. I have also opted for the Dr that is going to help me deal with the pain and problems that it causes, rather than trying to get Dx when we are just hitting a dead end.

I thought I would be happy if the pain would just stop, but it seems neuropathic pain does not respond to meds like that.

The other issue I have found is problems with insurance companies i.e. travel insurance as I cannot tell them what is wrong, and I am obliged to tell them I have seen a consultant. This causes confusion.

The same can be said of friends and family because there is no name, it would appear in their mind there is no problem.

Last week I had frank talk with a neuro psychologist, the previous day I had seen an eye specialist who explained the blepharospasm I am experiencing in my right eye was a life long condition. This made me ask the neuro psychologist what the out look was for people with unexplained neurological problems and I was told not good. ( up to this point Dr's have been saying it may just go!)

This bring me on to my final point of not having a Dx. We have critical illness cover if I was Dx with MS it would pay out, it would also opens other doors to finical and practical help. While I do not wish to have MS I am suffering the same symptoms and being given the same drugs (as PPMS) yet just because there is no name for the neuro problems I experience as I do not have enough lesions showing on the MRI, I just have to muddle through it, seems so unfair.

But at least I have some meds for the pain which do not do a great deal.
Helpful - 0
1396846 tn?1332459510

I know the feeling of not seeing anymore doctors and just letting happens happen. I felt like that a while ago. I decided to just let it be what it is. I did get dx'd with MS but haven't started any DMD's.

Your dx has been on again off again. It has to be stressful as heck on you and it certainly can't help with all your problems.

As for growing up in Cali so maybe its not MS cause there is always sun there. I don't care where you live. Is she saying that noone in Cali has MS cause there is sun. Well I lived in Vallejo for 8 years and that is just right accross the bridge from San Fransisco and I know for a fact that yes there is fun, but in the winter months there is hardly any sun because it is always raining. The constant fog that is around from the bay is another interuption.

I truly hope your instinct is wrong. I hope that you can just take a break from all the doctors and when you are ready, go back to a different one and see where to go from here.

I wish you the best of luck and you know we are here to talk if you need us :)

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1207048 tn?1282174304

I'm sorry you are feeling this and going through this. I will keep you in my thoughts and prayers. Lots of ((hugs))
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1453990 tn?1329231426
Yep!  You have to love that Northern CA Marine layer.   And it may have nothing to do with "sunshine" per se.  It seems to have something to do with the angle of the sun.  The only correlation is the distance from the equator, not the hours of sunlight.  So ho much that neuro knows.
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352007 tn?1372857881
How dare that Neurologist say what he did to you! How dare he!  He should be reported with that behavior!  I'm angered to even think that a medical professional would act and say such a thing to a patient!  As if logistics had anything to do with MS?  Does it?  

Don't you dare allow anyone to treat you with such disrespect again! Ever!  You are an important human being, a person with feelings, compassion, empathy and love.  You are experiencing the trauma that the Neurologist and OT put you through!  How dare they minimize your concerns with their unwanted input and how unprofessional!  

You have us, you have our undivided attention at any given time.  Please do not give up hope that there is some decent Neurologist and whatever ancillary care people that visit you at home.  

Get rid of the Neuro Dr.

Talk to us! Let us know how you're doing!
Helpful - 0
1394601 tn?1328032308
Sun????Pffffff...I am a water baby.  I spent from my early twenties to mid thirties in Houston, Texas.  I had a pool in my yard.  Where the pool was I lived!  Up to eating meals on the deck.  If I wasn't in my pool or on the deck, I was at the beach.  In my teen years I was a tan queen.  Always soaking in the sun. So much for how much sun keeps us from getting MS...  The doctor is an idiot.
Helpful - 0
1466984 tn?1310560608
I am sorry you are feeling so defeated.  But hang in there.    It is so hard to keep fighting against people who are supposed to help, when they are so unsympathetic.  That doc is so wrong with the comment about the sun.  AND wtf.....I'm not sure I would have that OT again -  Is she a OT, MD, psych, and social worker all rolled up into one big package?  WOW!  You were hit with a lot at a time when it sounds like you were feeling vulnerable.  

I hope you can find someone who can lend a good ear to talk all this out with.  Someone who will listen and not judge.  

As to your question - anyone who has a chronic illness that is undiagnosed will feel as you are feeling.  And when you have people who you trust with your care who you feel don't understand, that makes it so hard.  Give yourself a break.  You're ok.  Sounds like you need a break for heath care issues and docs right now.

I wonder if there is ONE thing that you can do for yourself right now that will make you feel better and bring some improvement to your life.  One thing......little or big.....one thing?
BE well.
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1312898 tn?1314568133
Thanks for listening everyone.  I feel better getting my frustrations and worries out in the open.  I also need to develop a thick skin when it comes to doctors at least some of them.

My PCP is a good doctor and very interested.  She thinks all of this is bull__t.  I need to remember that I have her in my corner.  She has referred me to rheumatology for the possibility of Sjogrens Syndrome.  She asked questions about the areas of numbness on my body and was surprised I didn't have tingling or any sensation at all.  I am going to let her sort all of this out.  

The reference to the Sun is about statistical data that indicates that people from temperate climates tend to have a lower incidence of MS.  Tell that to Annette Funicello.  

If I am dying then it will happen.  

Perhaps this is part of the grieving process---maybe the title acceptance is just that.  I can't change what is happening to my body-----it just is.  

Thanks for the support everyone!   Red

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1260255 tn?1288654564

I'm sorry about your ride on the emotional roller coaster. It sounds like you found one of the ones that really takes one for the big loops.

What has been happening to you is very real; what is unreal is that medical science and doctors have not advanced enough to give you a diagnosis that would give you a better quality of life. Some diseases can be cured, others can only be treated, yet you are still empty handed in terms of a diagnosis and proper treatment.

After reading your post(s), I can understand wanting to take a break from the doctors.

Sometimes I think that I will not live as long as either of my parents because of the symptoms I have experienced. At the same time, I also understand that every day we live is another day that brings us closer to dying, as we are mortal and we all have a finite period of time on this earth. In essence, from the day that we are born, we are dying, as that is the process of life. Following that logic, I can say "Yes, Red, you are dying, but I hope that it doesn't come for a long time, with you finding a life free of pain very, very soon."

You add so much here, and I for one don't want to lose you, but also want to know that you aren't suffering.

In deepest care,


Helpful - 0
1312898 tn?1314568133
Thank you so much Audrey, I do know that all of us are dying.  Thank you for reminding me about the fact that we are all dying and that from the moment of birth you are dying.  

I have the same thoughts about not living as long as my parents did. Like yours, neither of them experienced what I have or am going through right now.

I want to sort of 'let go' of this situation, I don't have control over it. I have attempted to steer this monster and now need to let it be.  At some point it will get worked out, probably without my help.  

I will continue to be here, this is my home and I want to support everyone here.  There will be times that I am very discouraged and not handling my pain very well. But like I say, we are all in this together!

Helpful - 0
987762 tn?1331027953
Red my dear friend,

Pain will wear even the best of us down, with or with out a dx, pain is one of those insidious conditions that will eat away at you, until there isn't enough left. You do sound overwhelmed by so so much, supidity from dr's and others is only one type of problem in a long long line.

I could tell you to stand tall etc etc but i dont think thats going to be of much help, and help is what you need! Am I reading more than clearly said, with your sister injured are you feeling more helpless, and even more depressed, was her calling her youngest instead of you who was closer, the final tether broken? Only you can peice your thoughts together, to see how you found your self in the mindset of lost hope. I wish i could give you a hug and tell you tomorrow will be brighter, it can be but isn't likely if you dont get the help you need.

Just how bad is your state of mind? Dont tell me, tell your self, if its as bad as i suspect, please focus your attention on changing that one thing, nothing else, just one step at a time. Call who ever you have to, do you have a therapist? What drugs are you taking, in what combination is there something that can be tweeked, is there any chance the drugs are eating away at your mental health, if you dont know find out. Many drugs that are rx for neuropathic pain are SSR's, atypical and anti psychotic's, if your on any of these type of drugs then they can throw your mental health state out of whack.

Sorry but this is not the time to give dr's a wide berth, you need to see someone asap, your mental health is important, it doesn't matter in the long run if you do see a psychiatrist to get you through this, WHAT EVER IT TAKES!


Ps dont be silent, we are here!  
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1312898 tn?1314568133
wiggles I think our posts were so close together that I missed yours.  This particular OT is very different.  I don't know her so reading her non-verbals was next to impossible.  She was truly trying to help, she opened her mouth and landed in a Quagmire.  

The Sun thing was a stupid thing to say.  My personal favorite quote of that day was "you don't want to have MS".  
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Avatar universal

I just want you to know how helpful you have been to me and others in the past. When you talked about your intuition, it broke my heart. I know very well how tough it is to even get up day after day especially in pain.

The Dr who said those insensitive/stupid things shouldn't be in the medical field. Unfortunately, there are way too many Dr's out there who have no sensitivity or common sense. I just want to say that I lived in Greece for quite a while as a teen and I still got MS. What now??

I am going to pray for you to feel better both physically and mentally. It makes me so sad to hear such dispair. Please hang in there. We are all here for you to vent if you need to.

Hugs and much support-
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1493284 tn?1294875712
What a time you've been having-- My goodness! I'm just so sorry for everything that's been making life harder than it has to be. Sending support(and flicking off your neuro),
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1495634 tn?1291391579
Hello Red,

Doctor's make me sick!  I live in Florida, for crying out loud. I just wanted to let you know that I was speaking to my spouse about 30 minutes before I logged on. I read your forum, and I am going to try & encourage you by telling you that yes, you are fighting for your life, sweetie. Don't you dare give up on any Doc, negative comment, & especially yourself. You can & you will, beat this, and be a testimony to others as well.

This is the exact thing I was speaking to my husband about,-so I wanted to share this with you.
You've labored, but it's not in vain.

Be blessed,
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1442701 tn?1286383987
Sorry for your & your sister's falling. I fall a lot too & know how that is. I also know about the doctors & how frustrating they can be!

Hang in there!!!

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429700 tn?1308007823
What you're experiencing is all part of a phase of what most people go through on their way to acceptance.  I found it interesting that is what you titled your post.  I think in the back of your mind, that is what you're thinking, too.  

I had that same thought--that I was going to die within the near future, too, when I was undiagnosed and being told I had this or that.  I was even referred to a psychiatrist one time.  I jokingly told my friends that I wanted on my tombstone, "I told you that I was sick and wasn't crazy."

I think if a person is going through what you're going through--pain, loss of ability, mobility, etc. you're going to feel a whole of emotions.  I don't know exactly all your feelings, but for me during this stage of diagnosis, I had a whole bunch of feelings going on.  I was angry that nothing was being done, shocked that I was experiencing what I was, upset that I wasn't getting much help (medical and the people around me), unvalidated, and had a lot of fear about the future.  

With a PPMS diagnosis, I am sure that your feelings are magnified by the millionth degree.  There's no real medicine that will slow the disease down, and I would imagine that you're not feeling that positive of ever having real pain relief.  My sister has a more progressive disease course and about ten-fold the pain that I experience.  There's nothing, in my opinion, that sends a person into despair faster than chronic, every day, excruitiating pain, with no relief in sight.  

I think one thing that would help is to find a neurologist that you can really trust.  Not having someone you trust really doesn't help.  Plus, your OT, although trying to be helpful, is not very professional--don't listen to what she's saying (lend a deaf ear).  She's not a doctor and hasn't the experience and expertise to give her opinion about something that is very important.  She also hasn't seen the whole picture of your complete medical history, MRIs, exams, etc. etc.  She should have respect for you having just been diagnosed with a disease that is frankly hard to accept.  

Warm regards,
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198419 tn?1360242356
I for one will not let you give in to this. I will certainly let you have this moment and it's totally understandable. Regardless of what causes us to give up we all do so from time-to-time. For me, it doesn't always stick.

When I throw my hands in the air and say I give, it's only because I've exhausted everything in my power to change the situation.  Sounds to me this is the exact place you have landed as well. All you've done to hold on to hope is depleted..............for now.

For now, Red. It's just for now. Later, when you get a glimmer of hope or the possibility of a better outcome -  that is when you'll feel us picking you back up from this fall and cheering you on all the way.

Letting you have your time you need darling but we've got your back when it's time to move foward.

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751951 tn?1406632863
Just wondering: How much schooling and real-world experience does the average physician receive in how to treat people, how to deal with people, how to interact with them as fellow human beings?  I remember the phrase "bedside manner."  If you have all the technical knowledge in the world, you're still a crappy doctor if you make your patients feel like crap!  Grrrrrrrrrrr............

Red, listen to JJ & Shelly; these ladies seem to know whereof they speak.
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572651 tn?1530999357
How's it going today?  Just wondering.......

hugs, Lu
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338416 tn?1420045702
That's not the first time I've heard somebody tell me that their neurologist said "You don't want to have MS anyway."  What were they thinking?  Oh, MS would be such a great disease to have!  Whoo-hoo!  

I don't think some doctors understand that debilitating symptoms and lack of a diagnosis is enough to cause stress and anxiety.  There's definitely a dearth of empathy.
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