Second opinion at Cleveland Clinic

Hello -

I am seeking feedback from patients who have gone to the Cleveland Clinic for neurological conditions that have defied diagnosis.  I began having muscle weakness 8 years ago.  I went through many tests, and the only thing that was abnormal was my muscle biopsy.  However, a definite diagnosis was not made.  I've remained fairly stable, except for stiffness which developed a few years ago, but that is now conttrolled with medication.  However, 3 months ago I developed extreme muscle fatigue upon use of my muscles which has not gone away. At the same time, I developed a choking sensation, but that just resolved in the last couple of weeks.  I have been to my local neurologist and to the head of neurology at a medical school.  All that was done there was repeat the same blood tests that I've already had, and another EMG. Everything is negative, except the biopsy.  I keep hearing the same story - these diseases are difficult to diagnose but we will eventually, over time, be able to diagnose it,it's nothing fatal, and there's nothing we can do about the muscule fatigue related to muscle diseases.  I could accept this if I could get a definite diagnosis.  I am getting desparate because this is deceasing my quaility of life, in that everyday tasks such as washing my hair and brushing my teeth are getting increasingly difficult. Sorry to go on so long, but I am wondering if others have had success with getting a diagnosis at Cleveland Clinic where other facilities have failed, are they thorough, etc.  Thank you very much for any input.

[Goldie84]

I have an appointment there in april and I have heard really good things from a friend that went there. I wish you luck! I have a lot of unanswered questions also and I know it is tough and scary. Take Care

[patsy10]

My experiences at  C. Clinic were horrible.  The worst I have been treated so far by any medical facility I have been.  I have an undiagnosed neurologic condition as well.  I have muscle weakness, stiffness, twitching, numbness, tingling, nerve and muscle pain, hyperreflexia, dragging a leg  and much more.  I have had every test known to man EXCEPT a muscle biopsy and all have come back normal.  My symptoms started suddenly with numbness and weakness in my legs.  I was completely normal the day prior.

Anyway, the first neuro I saw there received 3 personal phone calls while I was in the exam room, one being 10 minutes long.  They really were personal as he told me what they were about.  He diagnosed me with fibromyalgia, which is just a trash can diagnosis when they don't know.  My legs were so weak I could hardly walk from the parking garage to the appt.  Unsatisfied with my experience and my ongoing symptoms  which ruined my life, I made an appt. with an MS specialist.  I waited 3 months for the appt.  It was more like a psych. exam than a neurologist appt.  I felt like I  was seeing a psychiatrist.  Anyway, I was not taken seriously and was basically told it was "all in my head" which it is definitely is not.  I have talked to numerous people who have been there and told pretty much the same story.  I would not go back again unless my life depended on it.

You may have a different experience there as you have an objective, abnormal test result that cannot be denied.  My tests were normal so they "assumed" it all in my head.

Incidentally, I have a friend who had the same symptoms as you, and me for that matter.  Her problems were present for  years without a diagnosis.  Finally, a neuro(not C. Clinic) ordered a muscle biopsy and it came back positive for myositis.  Her diagnosis is polymyositis.  She is being treated with steroids now.  It's bad but at least she knows what she has.  Her only abnormal test was the muscle biopsy.  EMG's, CPK and everything were always normal.

[ampky]

I would get a specfic Dr.'s name and then do research instaed of looking at a particular institution (i.e. John's Hopkins, Boston Gen, etc)

I hope you get your answers!

[jmbatgirl]

Thanks for the information.  Good luck and let me know how it turns out.

[jmbatgirl]

I appreciate receiving the information.  I'll give the Cleveland Clinic a lot of thought before I make an appointment. I've had similar experiences with the medical profession and it angers me when I'm spending my time and money and not getting anywhere.  A lot of doctors seem to want the medical problems that jump out at them, not the ones they have to do a lot of digging to uncover the cause of.  The doctors don't seem to give my biopsy a lot of weight, although my local neurologist told me initially that they couldn't  rule out ALS with that type of a result.  I don't know what to think sometimes. I believe myositis has been ruled out for me.    Take care.

[jmbatgirl]

That is a good suggestion.  I know there are a lot of good facilities but it all depends on the specific doctor that you go to.

[patsy10]

I think the problem is arrogance by the physicians.  They can't admit they don't know so they feel they have to make a diagnosis instead of saying "I don't know".

[BetteB]

Again, I HEAR YOU!!! and can relate ABSOLUTELY!!! I am glad someone else is understanding my reality too...even though not easy....relief somewhat...Thanks for validation.