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What Do You Do When The Doctors Can't Diagnose You?
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An_221448 posted:
I am a 36 year old female. I am a mother of 3 and I have been happily married for almost 14 years now. The problem is, I have what the doctors are calling a neurological condition, but they do not, or can not give me a name to what is going with me.

It started in 2007 and I have gradually gotten worse. My left side is mostly effected. My symptoms are left side spasticity, left sided weakness, on & off symptoms of left sided eye muscle weakness (which sometimes cause double vision and a noticeably deviation), bladder incontinence issues, bladder spasms, a slight tremor in my hands when doing things, sexual disfunctions..etc.

I walk with a limp, because my left ankle will no longer bend completely up or completely down. I sometimes have to use a cane because my muscles will give out quickly with long use. My GP believes I have MS, and so does several other doctors. I have been tested and re-tested for MS mimics, heavy metals, vitamin deficiencies, and nothing has came up.

I have an abnormal neuro exam (hyper-reflexes), numbness, etc..The only thing that the doctors have found were 4-5 non specific lesions in the white matter of my brain and a vitamin D deficiency. My neuros are at a loss. They are right now just treating my symptoms. I'm on Baclofen for the spasticity, and Neurotin for the pain, and vitamin D.

What should I do when my doctors can't find the answers and I see a decline in my health? I went from walking normally in 2007, to walking with a limp in 2008, to needing a cane. I went from eye muscle weakness in 2008 that I could only see, to eye muscle weakness that everyone could see.

I would like any suggestions that you could give me on this matter. I did go to an MS specialist, but he said he could not diagnose based on my MRIs. I always thought that MS was a clinically diagnosed disease and not based off of MRIs since they can not see everything. All I want is a diagnosis, and maybe some treatment, for whatever this is.
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DUKE MEDICINE
Mark A Stacy, MD responded:
Dear Anon_7154,
I am sorry to read of your difficulties. Please know that, while not finding any abnormalities is frustrating, it suggests that it is possible for you to recover.

Neurology is a medical specialty that concentrates on finding a location in the nervous system to explain medical symptoms. Determining one anatomic location to explain all of your symptoms is difficult. In these instances trying to localize one major symptom is a reasonable step. Left sided weakness in the leg (only) may be from a problem in the spinal nerve root, spinal cord, brainstem or brain. Imaging with MRI and a test called an EMG/NCV will help. If your weakness also involves the arm, an EMG/NCV and spinal imaging below the neck is not needed. Spasticity suggests an increase tone in the limbs, and is associated with what we call an "upper motor neuron" problem. These tests will also help with that. I do not put much importance on the increased reflexes - unless they are greater on one side than the other, and numbness is not something that really helps with a work-up. Your doctors may wish to do a spinal tap.

The bladder dysfunction you describe usually requires both sides of the brain to be involved, so successful treatment is more likely to be found with a urologist. Ask for a referral.

Sexual dysfunction and a slight tremor are more likely to be a result of stress from your medical problems or other factors.

Intermittent double vision would occur from a rare disorder that does not fit with your other symptoms. Ask your neurologists if they have ruled out Myasthenia Gravis. I am confident they have done so.

Please know, that if all of this has been done, it is likely that there will not be an easy diagnosis. Also, please know that I do not wish to offend you or any other reader, but in some cases these multiple, unexplainable neurological symptoms stem from childhood abuse. If this is the case I am sorry, but it is important to discuss this with your family and your doctors. You have no blame for those incidents. If there are none of these issues, it may still be a stress related illness, and it is important to ask your doctors if they think this is the case.

In kindness,
 
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An_221449 replied to Mark A Stacy, MD's response:
My doctors have ran the test you have suggested, and they have ruled out MG.

My sexual dysfunction and tremor, in my opinion, is not due to stress from my medical problems. When I get a tremor in my hand, it is when I am reaching for an object, or putting on make-up, playing guitar, etc..This is when the tremor happens.

My sexual dysfunction consist of, lack of sensation, or less intensity when having the big "O". This has in turn, given me a lack of interest, but I still make love to my husband because I want to make him happy.

I assure you that I had a happy childhood, and I am currently happy , despite my health conditions. The problem with dealing with doctors over these last 3 years is, if they can't find the hard evidence through MRIs, LPs, etc..they then tend to blame your mental status. They want to say that there must be something wrong with you mentally, or you have stress. They do this, or assume this, without even knowing your history(mentally). To me, this is wrong.

I'm not saying that stress can't cause things to go wrong in ones body. Everyone, to me, has certain levels of stress in everyday life, but I assure you that my stress levels are controlled and I am a happy-go-lucky person. Life is too short to stress over things you can't control.

My problem is, that I have several doctors, my GP, opthamologist, urologist, that say that my symptoms do fit with MS. My local neuro has said the same thing. My local neuro has perform an EMG and said that my slight foot drop must be coming from the central nervous system since I passed the EMG with flying colors.

My understanding of MS, according to the MS society, is that it is a clinically diagnosed disease and not everyone has a positive MRI, but they still can be diagnosed. 5% can present without a positive MRI. Why couldn't I be that 5%? In the meantime, while my doctors are debating, my health status is declining, without treatment.

My doctors have already cleared me as far as my mental status, by the way. I'm not offended by your suggestions, but I think too many doctors are thinking this way, rather than listening to their patients. To me, all this does is confuse the patient, and delay a diagnosis when a neurologist plays psychiatrist.
 
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Mark A Stacy, MD replied to An_221449's response:
Dear Anon_7154,
I am sorry that no one has found an explanation for your neurological symptoms. I also apologize if you perceived me to be playing a psychiatrist, and would like to jump back to my very first statement: "while not finding any abnormalities is frustrating, it suggests that it is possible for you to recover."


As for my Neurological suggestions: the tremor you describe in your last note is most likely an enhanced physiological tremor or Essential Tremor (ET). ET is typically an action tremor that often runs in families, and may be treated with primidone or propranolol, among other medications. Some patients report marked improvement with a small amount of alcohol - half a glass of wine or so. For more information, you might want to look at the International Essential Tremor Foundation website.


One last suggestion: Consider an appointment with an MS Society recommended Neurologist. If you make an appt., take all of your records. This may help lead to a firm diagnosis or allow you and your family to no longer worry about your symptoms resulting from MS.







 
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An_221451 replied to Mark A Stacy, MD's response:
I am sorry too, for being so snappy. I did have one doctor earlier on in this process suggest that my symptoms were from stress. They did this without asking any personal questions about my life, or how I was feeling. The only reason it was suggested, and brought up was, because of my lack of evidence on the MRIs (only having those 4-5 non specific lesions) and no positive blood panels for the mimics. I guess you were getting the flack for that guy and I should not have taken it out on you.

I do hope, I recover from this, but all I've seen in the last few years is more symptoms added and a decline. I think my local neuro did refer to my tremor as a ET type, during the neuro exam. It doesn't happen all the time and the tremor just developed within the last few years. The only family members, that I know of that has/ or had a tremor is my aunt (she has Parkinson's Disease and was recently diagnosed) and my grandmother (she had PD like symptoms brought on by meds).

Thank you for your suggestions.

Take Care
 
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Pixietrix replied to An_221451's response:
I am very sorry to hear about your medical problems. I can relate. I am 30 years old, and for the past 4 years, I have had worsening numbness in both of my legs and my right arm. Now, I am completely numb in both legs, my right arm, and my left arm is starting to lose feeling. I have severe intolerance to heat or any kind, involuntary spasm, and crushing migraines. I have also had issues with my bladder, and sexual dysfunctions.
I have also seen several specialists, more than half of whom swear up and down that I have MS, but there is no positive proof per MRI.
As far as it being stress, I don't think it's the root of the problem for me, and I don't think it is with you. If anything my stress levels have gotten worse SINCE the illness, being as you have to alter your life so completely to deal with being ill.
But, alas, I was not told that - being a little overweight, the doctors immediately blamed that. Until the abnormal SSEPs, and the MRI showing a large benign tumor on my spinal cord (still of which, they say doesn't have anything to do with my symptoms.)
As of this moment, I am still without answers. But that, too, gives me hope that maybe someday, I will be able to walk normally again, that I might be able to return to my career as a nurse. I'm not hoping so far as that I will be able to play guitar or piano again - but I'll take not nearly cutting off my own fingers when I cook
I wish you the best of luck with diagnosing and treating your condition. But mostly, I wanted you to know you're not alone. I also wanted to say thank you. I tend to forget I'm not the only one the doctors can't figure out. Take care, and I hope that things get better for you in the near future.
 
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An_221452 replied to Pixietrix's response:
Thank you for your words of encouragement.

I hope someday we both find our answers to what is going on with us, and these doctors learn to listen to their patients, rather than relying completely on blood test, MRIs, etc.. It is a known fact, that blood test and MRIs aren't 100% reliable, and it has been proven during autopsy, that MRIs have missed lesions, especially in the spine.

I wish you the best of luck as well, and I'm hopeful that we will get our answers when we are meant to get them..even though I'm getting a little impatient.

Hang in there. Just because you don't have a DX, doesn't mean your doctors can't treat your symptoms. I've had to settle for that, just for now. I would make sure your doctors do the same for you too

Take Care
 
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thatgirlisme responded:
Anon

I saw this on April 10, 2010 and I couldn't find it and then realized I saved it. I read your letter here and I have so much of what you have. To this day they still don't know what is wrong with me. I am a 61 year old female and this happen to me about 16 years ago. I would really like to hear from you. I am not even sure how this works or if you will even get this so I will just wait to see if I hear from you.

Cookie
 
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tex1956 replied to An_221449's response:
Im going tru sim things with my nuro dr, Who wouldnt have some mental issues .brought on by 5mos of uncontrolled pain, they say nuro dr. has to see 2 sep epsoids consiisent with MS, just maybe being a tough cookie and very HAPPY person who loved her job for last 13 years,Vet and went back to work 2 weeks and 3 days after complete hystorectomy . maybe the first ep went flying by causing not as savere problems. in symtoms blown of as the flu women tend to have a higher pain tolerance then men Excuse my ignorece in my spelling All Ive gotton out of my nuro dr, is blugging disk, nurve impinment and arthritis thru my whole spin


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