Feeling worthless

[Kim610]

I'm posting this here because I have no on I feel I can talk to about this at the moment and I'm having a very bad day. After three episodes of neurological symptoms during the past year, a normal MRI and only slightly abnormal neurological exam, my PCP, someone on a similar message board, and one of my best friends, have all suggested that my symptoms might be psychosomatic.  My neurologist just said "you have paresthesia, see you in six months".

I started with numbness, tingling and fatigue, then I had muscle stiffness and pain in the same areas and more fatigue. For a few weeks, the tightness was so bad I was having trouble walking. Now I'm just in pain and very uncomfortable because of spasms and burning.  I'm also completely demoralized.  The idea that this could all be in my head is too much.  My husband doesn't understand why I don't feel well and neither do I. Prior to last summer, I was happy and energetic and had so much I wanted to do.  i was not depressed. I've always been open with my feelings.  I don't think I have a conversion disorder.  I am 40 years old and I have TWO master's degrees in PSYCHOLOGY!

I get that all kinds of things can be psychologically based, but I know myself well enough, and I believe I am educated enough to know that this is not what is going on with ME. But, after thinking this, my old self-esteem issues come back and I'm back to thinking what a loser I must be for all these people to think that none of these symptoms are "real". I'm not saying having psychosomatic symptoms makes one a loser, just that this is how I feel right now because I'm in pain, but I don't feel like I matter enough for anyone to care. Because it must all be in my head. I'm sorry for the rambling pity party, but I'm trying to deal with these feelings in a semi-constructive way!

[HVAC]

You know your body and what is going on with you. People including doctors say things are psychosamatic (sorry about spelling) when they have to answer. For years I was thought of as a hypochondriac because I did not go to a doctor unless something was really wrong and I could not fix it myself. I can take a lot of pain so I do not look like other people. After over 40 years they found out I had MS. Then three years later they found out I had terminal cancer. My doctor now realizes I am a stoic.

I walked around throwing up into a bucket for a year going to doctors all the time.. Finally I went to the doctor and said there is something very wrong with me. Finally the tests showed cancer and lots of it.

We have to advocate for ourselves.  When they said my MS was really depression I asked how could depression only attack the left side of my body. The doctor then called a MS Specialist.

Neurologista can take a long time. When they finally decided on MS it took two years of testing to get a diagnosis. Come back in six months is not a "Dis". They like to follow you over time.
Alex

[suspiciouscombo]

:-)

[Kim610]

I'm not even sure what to say right now except thank you. I clearly came to the right place when I was having a very bad day. You are all very wise, insightful, and kind and I appreciate the support and the advice very much.  I will stick around and I hope that I can offer the same kind of encouragement to others that you've offered me.

[suspiciouscombo]

....... The last post comprised of wisdom from Nx confirms why I highlighted her previously ------    :-()

[ConfirmedRachel]

Hi Kim,

You've had some good common sense replies - as all on here would know would be forthcoming with a "cry for help" heading such as "feeling worthless". We're here as virtual friends to all who seek friendship and sharing of experiences, welcome to the group.

Clearly you're a clever lady and with training in Psychology would probably be happy to give an individual who'd written your post some advice ... am I right?
Sometimes, having intellect and knowledge can add to your feelings of stress - "I should KNOW what's going on shouldn't I?"

Well, no, not always!
There are times for inward analysis and times for seeking answers from others. Sometimes it is more comforting to try both and as you've found, it can also leave you more confused and miserable than before. Picking the right people to ask is a minefield - they'll all genuinely be trying to help in the way they know how.

Anxiety, unfortunately, comes with the territory with unknown causes of illness. Anxiety and stress as you well know, is your body trying to help you out, all those lovely hormones etc rushing around preparing you for battle!

You've hinted that you struggled with self esteem before? Being open and able to express you emotions doesn't mean you're immune to getting down or depressed. Being depressed also is far from being 'lost', just temporarily a little off track and with guidance and help, people get their 'map' back.
You've said you've been happy - so you will be again! Also, you can obviously cope with some stress to pass x2 Masters exams, draw on that strength and happiness (ever seen Harry Potter? Get your 'petronus' thoughts going!).

Try to be more gentle on yourself. Life is a mix of high and low, sometimes you just need a bit of help to keep the equilibrium. Maybe have a chat with your general practitioner at the local practice? If they know how you're feeling, they might be able to suggest some ways to tackle it - and some different pain relief it that is an issue. Be open to suggestions you might not have thought about, and above all hang in there, we're all just a few keyboard strokes away.

Nx

[suspiciouscombo]

Either way it's a tough journey. If anyone gets it from years of limbo land to finally a dx it's aspentoo. Her blog has truly helped me get through the rough patches. What's more challenging is seeking alternate medical specialties only to have them direct you back in the direction of neurology.

That in itself causes frustration as many have navigated that path. Very true as many convey here that neurologists like to place some patients in a wait and see mode which is where I've been placed.

Another incredible inspiration here is confirmed Rachael ... Her perseverance and strength is admirable. That said...... Everyone here is inspirational as each case is unique but common.

[johnsam]

LIKE YOU, i am struggling to figure out what is going on with me. Multiple tests and still nothing. Clean brain MRI and just had the cervical MRI. My main issue is my skin - seems to feel like it is burning mainly on my feet. At times my left foot feels sooo cold! It is the WORST sensation. I was tested for peripheral neuropathy and small fiber and they were negative. My neurologist thinks it is related to menopause. I am 46 but my hormones indicate post menopuase. I have started birth control pills to see if things improve, but 3 weeks in I see no difference.
I'm going to continue to fight to get my full spine tested. My younger sister (by 8 years) was diagnosed with MS last year.

[suspiciouscombo]

We are right there with you and understand it's frustrating to have these symptoms without concrete explanations. I think someone else may have suggested this already but if possible, I would seek another MS specialist for additional eval. Certainly can't hurt and I'm glad I took that route .... Just a thought. Hugs

[suspiciouscombo]

As aspentoo conveyed......"you are NOT alone!!!" I second that statement. Like you, I'm very well educated but only speaking of myself .....I know I can be the architect of my own demise by over analyzing and expecting immediate clear and convincing answers.  Not stating the over analyzing is the case with you at all.  I've experienced mild to severe symptoms over the last few years with no visual clinical findings following numerous MRIS. Yet symptoms worsen with new ones surfacing along with time span in between shortening between episodes. At times I feel I'm stuck at the bottom of the well without a rope to grasp.

Many here know exactly how you are feeling emotionally and somewhat physically. I research, and want answers for a real physical illness yet at same time understand why neurologists cannot always provide those answers looking at it from their lens that is......

Please feel free to vent here. As you can see from prior comments posted on your thread, this is a very cerebral group of individuals enduring much of what you experience. For this reason, I've only engaged on this forum. Many commenters here review comments, assess, think and provide feedback from pure candor. Far more brilliant minds here than mine and I've discovered a certain inner comfort knowing like minded people navigating the same journey as mine are here to listen free of judgement.

Stay in touch and as again another reminder from  Aspentoo... "You are NOT alone!!!"  

[Kim610]

Thanks Aspen. It's really helpful to know I'm not alone! I'm glad you were finally able to find some answers. Thanks for the advice!

[aspen2]

(((hugs)))

I was in limbo for three years, and know EXACTLY how you feel by this:

"But, after thinking this, my old self-esteem issues come back and I'm back to thinking what a loser I must be for all these people to think that none of these symptoms are "real". I'm not saying having psychosomatic symptoms makes one a loser, just that this is how I feel right now because I'm in pain, but I don't feel like I matter enough for anyone to care. Because it must all be in my head."

You are NOT alone!!!

Immesco is right on, a six month follow-up is standard of care when your test results aren't obvious.  You are being followed and not dismissed, although I know it feels like it right now.

The best thing I did was to see a psychiatrist, fairly early on.  His note in my file (appropriate situational anxiety due to undiagnosed organic disease) was a big help for my gp, ER docs, etc.  My willingness to have this investigated spoke volumes to naysayers in my life.

His note also contributed to me finding a NEW gp who is truly a partner in my medical care, and who continued to help me investigate mimics during the very long wait for a diagnosis.

Meanwhile, look for all the constructive, helpful support you can find.  This is a good place :).

Aspen

[Kim610]

Thanks for helping me put things in perspective.  I'm being overly sensitive. That tends to happen with me. My confidence gets shaken easily; it's not one of my best qualities. I did feel dismissed by the neurologist, but I guess the fact that she wants to see me again is a good sign.  You're right, she's the one who counts. I was afraid that she also thought that my symptoms were psychosomatic, but just wasn't telling me. Maybe that doesn't make sense! I'm sorry for the unnecessary self-pity.  I'm just having a bad day physically and emotionally.  I think it's time to play with my kids.

[immisceo]

A stranger, a non-specialist, and a non-objective friend imply they think the cause is non-organic. The neurologist, however, advises monitoring over time. It sounds like you are in fact NOT being dismissed by the only person of the four who matters.

When test results are not clear-cut, following a patient every few months is standard of care. Most of us can only have a diagnosis that complies with the McDonald criteria when out medical history and tests are contextualised over time.

If you feel iffy about the neurologist, by all means pursue a second opinion. But it doesn't sound as though he's dismissing you.