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Frustration with Doctors, Symptoms, and Diagnosis
skilee posted:
I have been struggling for over 6 years with "Something" that has kept me from working and recently, from wanting to do just about anything. I have all the symptoms of MS, including brain lesions & protein in my spinal fluid, but my 'relapses' include an incredible amount of pain and fatigue so pervasive I can barely get dressed some days. Having a really hard time 'dealing' (if that's what you call it) and thought maybe joining a discussion group would help. Any thoughts?
hackwriter responded:
Dear Sheryl,

Sorry to hear of your struggles, it's good that you came here for some feedback and I hope we can help.

The info you gave suggests you do not have a Multiple Sclerosis diagnosis and you've had at least one brain MRI and a lumbar puncture.

A few questions come to mind: What has your neuro told you about your symptoms and their cause? Are you taking any symptom meds for pain, fatigue, or anything else? Is your neuro following up with exams at least every six months to track your progress?

Also, do you have any other diagnosed conditions and taking meds for those? If you could give us a little more info I think we could give you more informed feedback.

Hope to hear from you again, soon, Sheryl.

swampster1952 responded:
Hello Sheryl,

Kim covered the basics for moving forward with getting a diagnosis for your symptoms. Most of us here know from personal experience the frustration that goes along with getting a correct diagnosis and then finding the right combination of drugs to help alleviate the symptoms and slow the progression of the disease.

Try and find a neurologist that specializes in treating people with MS. This should go a long way in ending your frustration with getting a diagnosis.


skilee replied to swampster1952's response:
thank you so much for your input. i have another appt this monday and hopefully he will have all results from my spinal tap...i have been tested for myasthenia gravis, lupus, ra, etc...over the past 6 years and no specific disorder has been identified yet I still can't work full time and to be honest, I can handle just about all of it except for the fatigue- although recently the pain (mostly in hip, feet, and hands) has been pretty difficult to ignore. i didn't want to get involved in any type of 'group' until just recently- glad i finally did.

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