Frustrated and ready to give up on the medical community

[scharm]

I posted this on another question, but thought it might be better to start a new post.  I am frustrated with the medical community.  It has made me so that I don't trust doctors.  I just want someone to explain why all this is happening.

I too have suffered terribly for over 20 years, they keep telling me they haven't found anything that it may be too deep, and the only way would to be to do an autopsy.  And they didn't think I was ready for that.  I have also been told that it's anxiety too, have been put on anti-depressants and referred to psych.  I am sensitive so I tear up easily.  I just want an explanation!

Today, I don't have a lot of faith in the medical profession, as stated above doctors need to be an advocate ... working with you, not against you.  I have been symptomatic for about 20 years.  About 1 year ago, I had an attack that included double vision.  They sent me to their eye specialist and he told me that I had it from birth.  I was totally thrown back by this.  I questioned my father who told me I have never had double vision, and I questioned my ophthalmologist (I've had for 20 years) who told me I had never had any evidence of double vision, that his opinion it was neurological.  Recently I had an MRI which showed hyper-intensive lesions in left optical and bilat frontal lobe white matter and non specific demyelination process.  I have tingling and numbness all over my body (sometimes increased in various different areas), burning in my legs, slurred speech at times, vertigo, loss of hearing (which the ear specialist told me it was age), constant ringing in ears, sometimes blurred vision, past appearance of Marcus Gunn phenomenon, depression (from the pain), balance issues (have a hard time riding a bike or standing by a moving body of water), loss of concentration, memory issues, constipation and unable to control bladder.  Now ... please tell me is this in my head and caused by anxiety?  

I sympathize with everyone that is frustrated with the medical profession.  All they have to do is listen and reassure the patient that their intentions are to follow/care for you.  And that they will find an answer one day, if not now sometime in the near future.  Just believe and give us hope.

Seriously frustrated.

[scharm]

Hi Sparkysarah!  Yes, I agree with you.  There is no mild case of MS.  However, in the GP's defense I believe that he was trying to give me a positive outlook, lighten the blow so to speak.  I am thankful that he was upfront with me, as no one else has been.  In my search for an explanation, one doctor told me that it was all in my head, I replied to her ... LITERALLY!  Never went back to see her again.  (I think, that part of the problem was she had treated me for anxiety and depression ... so that was her answer to the problems).

At least now, I have some closure to the mystery and can move on.  I plan to keep listening to my body, and get rest when I need it.  You know sometimes it's really hard cause I am so tired, like the energy was literally sucked out of me.  Need to stay positive!

Hope the neuro appointment goes well. I am a little scared, because all of my dealings with neurology doc's haven't been good.  My GP says he is a good doc, so I am going to trust him.  He really listened to everything I had to say, without judgment.  I felt he was willing to help me through this problem, whatever it may be.  Unfortunately, my suspicions were accurate.  Hopefully I can keep this in check!

Thank you for the support!

More to come....
scharm

[Sparkysarah]

Wow - twenty years of searching and it just takes one doctor to find the answer that you knew your body was telling you. I am a great advocate of listening to one's body and gut instinct as we know ourselves better than anyone.

I disagree with your GP that you have mild MS..there is no such thing...we either have it or we don't and if it is RRMS then we are either in remission or relapse. However there are different rates of progression and how this wretched condition manifests itself within each of us is individual and also how we cope and deal with our symptoms is very personal.

So I am glad for you that you have at last found an answer but sorry for you that your journey has been such a long protracted one. If you were showing signs of anxiety it is hardly surprlsing because to be disbelieved and belittled is condescending and hurtful.

I really hope that your neuro appointment goes well and support Addi's suggestion of looking at our health pages. You will find this is a great community to reach out to and although for many of us it is electronic rather than face to face,  I have never across such an amazing group of compassionate people and there is a bond that ties us together.

Welcome and please let us know how you get on.

Love Sarah

[scharm]

Thanks for the welcome, Lulu54.  Yes, a bit of a relief to know what we are dealing with.  Perhaps now the medical community can implement the proper treatment.

I am bummed about having this disease too.  It has really played havoc with my family.  My father now 70, has suffered for over 30 years and my baby sister was diagnosed at 19.  We all are different but similar, it that makes sense.  My sister has it the worst.  She is 6 years younger than me and has progressively gotten worse in the last 5 years.  Recent MRI showed 30+ lesions in her brain.  I hope and pray that the disease within me, remains mild comparatively.

Well good day to all, and keep moving in anyway that you can!  We can't let this disease win!

scharm

[Lulu54]

I know what you mean about the sense of relief in finaly having a name for your disease- I'm sorry it's Ms but you at least know what you are dealing with.  Welcome to the club.

be well, Lulu

[scharm]

Thank you.  I too hope it turns out that the neuro is going to be as helpful.  I am experiencing what I believe to be a flare up.  Vision problems, loss of concentration, short term memory issues, hightened burning in my legs and waist, fatigue, headache.  I am going to write all of this down and present it to the new neuro at the end of the month.  

Thank you for your support.
Schar

[addicted2harleys]

I am happy for you to finally finding a doctor that works for you!   That is great news!   I hope your neuro visit at the end of the month turns out to be just as helpful, if not more!   Keep us posted...

Hugs,
Addi

[scharm]

Well I seen my new GP (or PCP) on Thursday, March 2nd.  He read the results of the MRI and said that I have a mild form of MS.  I see the new neurologist for follow up at the end of March.  It may never get any worse than what it already is.  ;-)

My new doc, didn't say much when I told him what the MS clinic doctor said and referred me to a new neuro so that it "can be followed".  Yipppeeee!!!

I am not happy that it is MS, but I am relieved that now I have answers and will have a doctor that will know how to treat if I have another attack.  

I continue to work as a Administrative Assistant and plan on taking more classes when I get feeling better (my degree is half done).  Must manage the stress levels.  This is half the battle to the disease; I know this because of my father and my baby sister.

I want to thank everyone for listening and providing feedback.  It helps to talk to others that are experiencing similar frustrations.

Hugs and thoughts are will you all.
Schar

[scharm]

Hi Addi and Lulu,
Thank you so much for listening.  

Answer to your question as to what type of doctor I am seeing, is that I only have a GP (or PCP) right now.  I have seen many neurologists over the years and have been totally frustrated with them.  I have been fighting this since 1988.  The last attack, I had the double vision, tingling and numbness in different areas of the body, cold burning in legs and back, heightened ringing in my ears (some days worse than others), vertigo, incontinence, and fatigue.  They did an MRI which showed hyper-intensive lesions in left optical and bilat frontal lobe white matter and non specific demyelination process. I was then referred to the MS clinic, here (no names).  At this time, the neurologist looked at the MRI and asked my history and symptoms, which included all of the above.  He then stated that it was from High Blood Pressure and that I would never have to return to his clinic.  Now, my father was diagnosed with MS at 59 through a LP (finally found it after 30 years; first attack in 1978 with same symptoms as as a stroke and ruled out), my baby sister was diagnosed at 19 through several tests, history and an MRI.  She was also turned away by the same MS clinic/neurologist stating that she did not have MS and she would not need to return to his clinic.  Mind you she has Progressive/Re-missive MS (I think), the lesions in her brain have went from a few to over 30 now.

I have showed neuro symptoms since 1988.  I don't get it, how could this be from HBP?  I am not a doctor, but this doesn't make sense.  This guy is an a??.

My GP stated "at this time we can only treat the symptoms, that I was not in harms way right now".  She never really came out and said what was going on ... I felt like she avoided my question.  That was about 2 years ago, I have since had to find another GP as my insurance has changed.  I try to ignore these symptoms, hoping that they will go away ... but their not.  I am worried that I am going into another attack, symptoms are worsening.  

I am planning to visit my new GP and take the results of the last MRI and hope that he will look into it further.  

I just wish someone could give me some answers, if it's not MS great, but what the [blank] is it?  

[addicted2harleys]

Hi and welcome to the forum.  I am sorry that you are having health issues.

There are quite a lot of people here that share your frustrations with the doctors and medical care or lack of, including myself.  

I can only speak of my own experiences in my journey for answers.  I have been fighting this fight for six years now and still remain undiagnosed.  What I find ironic is that most of the doctors I have seen cannot give me any diagnosis, all my tests come out "normal", I am in a wheelchair and (here is the ironic part) I have been approved for SSDI, my symptoms prohibit me from working and I am on many drugs for symptom relief.  This makes no sense to me.  

I lived in Ohio when these strange things started happening to my body.  My first incident I was told I had a "mini stroke" ear and urinary tract infection.  My next incident I was told I had bronchitis and MS, plus they informed me I didn't have a mini stroke.  Then I went to a neurologist and she told me to go out to dinner and celebrate because I didn't have MS and I no longer needed to be seen by her.

I went to the Cleveland Clinic for a second opinion.  They told me I had a neurological virus that is no longer present and I was going to be fine.  The next incident I had I was given an MRI and told me I was fine.

Then the following incident when my legs quit working I was put in the hospital for 5 days.  The neuro I saw there told me this was "all in my head".  I never fully recovered from this incident.  This was when I lost my job and realized I could no longer work.  I started questioning my mental state.  I felt so alone, defeated, scared and frustrated.  This was when I moved to CA to live with my mother because I was no longer able to do things on my own.  

This was also when things changed a bit for me.  I found a wonderful pcp that actually listed to me.  He never looks at me like I am crazy or faking this.  He is the doc that has run most every test I have had here in CA.  He is searching for answers with me.  At one point, I heard that Polygrip overdoses were happening and could be the cause of my issues.  I printed out what I found and took it to my pcp.  He hadnt heard about this but ordered the tests I needed to see if I fit and could quite possibly learn the "why" of what is going on with my body.  Unfortunately, my tests were negative for that.  So he treats all of my symptoms for now until something shows up to maybe give us answers

While I have a wonderful pcp, I have yet to find a neuro with the same mindset.  I am going this week to neuro number 4 since I have been in CA.  I have my fingers crossed that he will LISTEN to me and be willing to search for the answers for me.  

I also got all my records together and went to UCLA last year.  The neuro there gave me a nerve test on my legs, told me the tests were normal and sent me back to see my last neuro.  

Anyway, that is a rough short story on my experiences with doctors.  I had a little trouble reading your post so I may have missed it, but do you have a neuro?   If yes, does he specialize in demyelinating diseases or MS?  What was the explanation you were given regarding your MRI?

The big thing that changed for me was this forum.  When I found it, I had a lot of confusion, frustration and fear.  And I was angry.  With the help of the wonderful people on this forum, I was guided down the path of, basically, organization of my medical care.  I found that I was definitely not alone and I became more proactive in my medical care.  This forum gave me my self worth and confidence and my backbone back that I had lost.

There are members from all of the world on this forum.  Some are diagnosed with MS, some are in limbo and looking for answers and some that found their answers but it turned out to be something other than MS.  There is a whole lot of compassion and understanding in this forum.  And a lot of smart, smart people here.  

Some have spent a heck of a lot of time making the Health Pages for people to gain understanding on many different subjects.  There is a lot of factual and extremely informative information there...you can go see for yourself by clicking the link for Health Pages up in the top right hand corner.  I urge you to spend some time there.

I learned how to make a timeline of all of my flares and symptoms, tests and prognosis.  This has been so very helpful when I go see a new doctor.  I also learned about getting all of my medical records together.  I have a three ring binder with EVERYTHING in it.  This has been so helpful to me and to the different doctors I see.  

I have been guided down the right road in my quest for answers.  What doctors to see, what tests should be done, what questions to ask and what kind of specialist I should be seeing.  I have learned about the different symptoms that I have....just so much.

So, scharm, I think you have landed in a very good place.  And I welcome you again to this wonderful forum, though I am sorry for the reasons why you landed here.  I hope your experience here on the forum turns out to be as beneficial to you as it has been for me.

Hugs,
Addi

[Lulu54]

Dear frustrated, It would be all too easy to give up, if only your body weren't telling you something entirely different.  A key question I have is what types of doctors has you seen?  He you been seen by an MS specialist?

Or perhaps a nueroopthamologist could be of help.  It is horrible to be left hanging like you have.  something is wrong with you - and even if it is coming from anxiety, and I don't think it is! -you should be getting trreatment.

I hope we will see you around here and perhaps others can help to brainstorm a new direction for you.

be well, Lulu