New Health Page for Limbo Landers with Differential Diagnosis?

[Audrey_M]

Given that so many of us are in Limbo Land and some end up with differential diagnoses, I'm wondering if it would be helpful to have a Health Page dedicated to this subject where members of this forum share the pertinent information that led to a differential diagnosis.

JohnnyMutt just found out that his sx are caused by a Vitamin D deficiency. After 8 years and 4 neuros, my preliminary dx is degenerative disc disease with ischemic brain lesions caused by a hereditary clotting disorder, erratic blood pressure and being a smoker.

The page might include the age at which sx started, length of time and # of doctors before dx, list of sx anf their progression, tests ordered (in chronlogical order) and some brief follow up to see how treatment is working with the dx.

This might be helpful to others in terms of relating their sx, asking more questions of their MDs and requesting certain tests, depending upon how well they match the sx and tests that have or have not been run.

Do this make sense?

[Wind_and_Water]

My last post, above, was about CRPS.

This post is about "chronic hyperventilation syndrome" (hat tip to Celery47 (http://www.medhelp.org/posts/Multiple-Sclerosis/I-feel-like-such-a-hyperchondriac/show/1259476).



Symptoms:

Dizziness, confusion, unexplained fatigue, weakness.

Tingling or numbness, especially around the mouth or in the hands.

Breathlessness, weakness, and painful legs during activity.

Chest pain.

Frequent yawning and sighing.

Upset or sore stomach.



Testing:
CHS results in chronically low levels of serum CO2, so a series of blood tests might support this differential diagnosis.

Additional Info:
http://www.empowher.com/community/share/chronic-hyperventilation-syndrome-runners-story

http://breathingwise.blogspot.com/

[Wind_and_Water]

In another thread, twist330 shared her differential diagnosis of CRPS.  At one point, she asked, "I wondered whether there is anyone that has been mis diagonosed with RDS before MS?"

I thought this could be a good addition to this thread.

twist330, I have a friend who was misdiagnosed with various diagnoses, until she was finally diagnosed with RDS (CRPS).  Sort of the reverse of your question.  She feels confident that CRPS (which she calls "craps" with good humor) is the correct diagnosis in her situation.

But if you're not reasonably confident in your diagnosis, then (IMHO) it's a good idea to present your doubts -- along with your reasoning behind the doubts -- to your doctor.  Here's some extensive, indepth information on diagnosing CRPS.
http://emedicine.medscape.com/article/793370-overview

Then see his reaction.  If he feels you have made some good points, then ask him to consider ordering additional tests that can help support the CRPS diagnosis.

For example, in the case of CRPS, a bone scan could objectively show increased circulation to the affected joints.  Thermography could also objectively show a disturbance.  X-rays could show a loss of minerals in later stages of the disease.  MRI could show tissue changes in the affected areas.

If those tests come back negative or inconclusive, then you could reasonably ask your doctor to consider additional tests to rule out MS (such as a brain, cervical spinal, and thoracic spinal MRI).

[sllowe]

Good idea for a HP!

A collective testimonial on differential diagnoses?  Just thinking out loud on titles here...

Keep the brainstorm going, and in the meantime I'll look for some past discussions on differential diagnosis - that way we can capture our current, and then hit up our long time members to be a part of it as well.

-Shell

[SickMomma_PDX]

I seem to be permanently in limboland, so I'd LOVE to see something like what you're proposing, Audrey.

[helen41]

I love this idea. My prelim diag is narcolepsy (because of the fatigue and terrible night sleep), Vit D deficiency, chronic microvascular disease (no risk factors apply) and unexplained muscle wasting and pain. I have to think these are a suspicious lot of ailments to suddenly get at the same time. My experience is that as I complain about each symptom I get one more diagnosis, but to me MS makes the most sense and covers all of the symptoms, even if they haven't seen MS lesions.  I'd be eager to hear of the experiences, symptoms and end diagnosis from others as well. Thanks

[Wind_and_Water]

Audrey, I love your idea.  I believe it would be very helpful to me.  Thank you for suggesting it.

[Audrey_M]

Mike:

I agre that this would take some work to keep updated. I'd be willing to draft things for the moderators to review, edit and post and hope that others would volunteer to do the same.

Sho, your case is well taken in terms in a mis dx and that deserves recognition as well.

Now we just have to see what others think!

Audrey

[shoshin]

That makes sense and will hopefully encourage people to keep an open mind. It might also give people some ideas of other avenues to pursue.

You might also link out to a couple of the health pages that are related to this topic:

MS Mimics - Part I
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/MS-Mimics---Part-I/show/375?cid=36

Common Blood Test You'll See During the Diagnosis Process
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Common-Blood-Test-Youll-See-During-the-Diagnosis-Process/show/446?cid=36

and maybe one of the ones on the McDonald criteria.

In my case, I was actually mis-dx'd with something else for some time before they figured out it was MS so I imagine quite a few people have stories that go the other way as well.

sho

[Mike_Shuswap]

I think this is a very good idea!

It would take a lot of work and smarts to put it together, and it would have to be updated all the time (the way I picture it) but I think it would be incredibly helpful for a lot of our members.

Great thinking, Audrey. I hope this comes to be.

Mike