SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
why do they make you wait so long
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
520 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

why do they make you wait so long

why is it that your neurologist or like me even my muscularneurologist have me take these tests then see them in 3 months? We wont ever get a dx if i constantly have to wait so long to see them. Even after the muscular neurologist said this is probably gonna take us awhile to figure this all out. He is also just started seeing my mom who he wants her to have a emg then a muscle biopsy. I am falling further and further apart faster and faster and it just seems stupid to wait so long. They know when I leave their room I go to the front desk make my appointment for my test and then the follow up, why not have me make my appt for return visit 2 weeks after the test. I am just so mad at this taking forever.
4 Comments
Blank
Avatar_f_tn
Hmm. Makes me wonder if the doc isn't really expecting any answers from the tests. Maybe he just wants more time to see how you're doing in 3 months.

The MS specialist I went to had a minimum 2 month wait to a next available appointment. In order to get my vision tests done before the next appointment, it ended up being 3 months. I guess they figure we're not going anywhere!
Blank
551343_tn?1350880995
The reason why people get so sick is because of the wait for tests.

In the UK it was horrendous about 10 years ago, but lately because of new guidelines the test appointment must be made within a month, and the results must be in quicker.

It does help a lot now that we can find out a bit quicker why we are ill.

I think too some of the problems are so specialized that even the doctors havent really got a clue.

I just wonder if we looked at one of these doctors computers how many things they would have on bookmark lol, like we do lol.x
Blank
163240_tn?1337907961
I can usually get in really quick to get my test, its the follow up appt that is ridiculous. I can usually have my test done in under 2-3 weeks. It doesnt help either that he is also seeing my mom who he wants to run additional tests on her since she is far worse than me. I sure hope he isnt holding up trying to find out what is wrong with me cause he is also trying to figure out what is wrong with my mom. Esp since he thinks its probably genetic. So what could only woman have that is genetic that looks very much like MS? Since my pcp is still convinced it is MS unless it is something extremely rare.
Blank
Avatar_f_tn
Have you heard of the NIH's undiagnosed diseases program (UDP)?  I got the quotes below from this article.
http://nihrecord.od.nih.gov/newsletters/2010/01_08_2010/story2.htm

“We’re inviting anybody with an unexplained problem to make an inquiry."

To get into the Clinical Center via the UDP, patients’ medical records and summary letters from physicians are submitted and triaged to NIH specialists in related medical fields. Those specialists recommend whether to accept the patient.

Since May 2008, the UDP has received more than 2,300 inquiries and 900-plus medical records; 190 patients have been accepted, including 80 children.

Gahl said the top three criteria for inviting the patient to the CC for in-person evaluation are whether the case offers a “good clue to pursue, unique presentation and whether the patient’s family is involved.
Blank
Recent Activity
1228375_tn?1406045327
Blank
Queenfan is ...still wondering what ... Comment
Jul 22
5265383_tn?1380059282
Blank
aspentoo neuro-opthamologist appoint... Comment
Jul 18
428506_tn?1296560999
Blank
wonko baby is just over 6 weeks n... Comment
Jul 18
MedHelp Health Answers