How should I talk to my doc about symptoms?

[SallySuzy]

Hi all! I am so glad to see this site.

I have had a very long list of symptoms for several years now. I am currently undiagnosed for MS. I finally found a GP who listens to me, but my symptoms have gotten to where she has to send me to specialists to figure out what's wrong.

Here's a quick rundown of the things I'm experiencing:

dizziness, depression, anxiety, heat sensitivity, bowel and bladder problems, nystagmus, memory loss, muscle spasms, weakness in my hand, difficulty concentrating, visual and aural disturbances, electrical feeling down my back and in my wrists (like when a joint pops, just supercharged), prickly tingling sensation on part of my back, possible seizures (abnormal EEGs), low vitamin D, tremors, fatigue... the list is longer but I'll stop here for now.

I have had psoriasis since I was 12. Before psoriasis, I had urticaria that was aggravated by extreme temperature changes. I can remember 3 times from when I was younger that I hit my head really hard. REALLY hard. One of those times, I fell out of a hammock that was 5 feet off the ground- landed on my head on a pine tree root. I also have low thyroid. I also have a strange rash that comes and goes that looks a lot like LP- it doesn't look or act like my psoriasis at all.

My doctor listens, but even I get tired of reciting the litany of problems I'm experiencing. She sent me to a psychologist to see if my depression was caused by another mental illness. The psychologist thinks I have temporal lobe epilepsy. My neurologist thinks the psychologist is wrong. Neuro doc has sent me for bloodwork, EEG, MRI, and neuropsych testing. Bloodwork was fine, EEG was abnormal, still waiting to hear back about the MRI and neuropsych exam.

My neuro came very highly recommended by my GP who I adore. But the neuro is obviously very intelligent and isn't interested in hearing anything other than a clear answer to the questions she asks. My problem is that there is so much going on that it's difficult to answer her precisely without bringing in tangents that may or may not be pertinent to the questions she asks me. She will put up her hands and cut me off if she thinks I'm straying from the answer she is waiting for.

I've been to the other neuros in my area and have gotten nowhere with them. My current neuro at least ordered bloodwork and an MRI, which is way more than the others did.

How do I get her to listen to me? I feel my concerns about MS are not unfounded, but she doesn't want to hear any discussion about what I think my symptoms may be. Can I get my GP to talk to her? With my symptoms, I feel that there are a lot of puzzle pieces to put together to figure out what's going on. I'm trying to help her see the entire picture, but she's only interested in reading test results. What should I do?

[SallySuzy]

Thanks all! I'll keep you posted.

[Guitar_grrrl]

You DO have a lot going on!  Well, I'm glad you're having an MRI and other tests.  Even though you have so many symptoms, docs can be overwhelmed when we go in and spill lots and lots of symptoms.  Have a list of symptoms written down, as well as a BRIEF (1 page max) time line, and focus on just three of your worst symptoms.  It's so much easier to treat the worst three at a time, and often the treatments for the worst three can cover many of the others.

Let us know what happens!

[allmymarbles]

Thee is such a thing as too much information. This often happens when minor issues are lumped together with major ones. In reading your question it was hard to find the "meat." You may be placing your doctor in the same position. You say she gets impatient when you don't stick to the question she asks. She is trying to diagnose your condition. She does this in her own way.

Try keeping your talk to the essentials - eye problems, mental problems, muscle problems,whatever.  Be concise. Feed her medical interest.

[kwarendorf]

Hi SS - Welcome to our MS Coffee Klatch

You sure seem to have lots going on. At this point I understand the temptation to think everything is related. Also at this point it's important to find a single source of medical guidance, rather than seeing a wide array of professionals.

First thing, psychologists are not medical doctors so I would discount any diagnoses  they provide.

When seeing your neurologist try to avoid providing your opinion. The internet provides way too much information and tends to turn us all into doctors :-) Let the neurologist ask the question. She knows what's relevant. She also seems to be ordering the right tests.

The neuro-psych test is interesting, but not diagnostically relevant. Blood tests, MRI (brain and c-spine, with and without contrast), lumbar puncture and clinical exam are relevant.

The blood tests will help rule everything else out. The MRI's will show old and new lesions and the LP will show whether or not you have oligoclonal bands in your cerebral spinal fluid (CSF) but not in your serum (blood drawn at the same time as the spinal fluid.

This can be a long, and sometimes frustrating, process. Hang in thee and keep us posted as to your test results.

Kyle