Help Please: Testing from A to Z

[Fed Up]

Hey All the Special People Here at MS World. I would like to get a complete and concise list of testing that can or should be done with M.S.

I've had MRI's without dye of the brain and entire spine.

Plus many lab tests, of which, I don't know all of them.

What I plan to do, tomorrow (I have an appt. with a neurologist); Is ask him which tests have been done and acquire the results.

PLUS...I expect to ask him to do any testing, that has not been done. Lets pretend, I've had NO testing and make a list of very specific tests, you think I should have. (I've had a spinal and was told it was "borderline"!). To come and have it repeated in a year.

My biggest problem is, last week, I was so stiff, I could not get out of bed or on and off the toilet. I have seen specialists for cardiology, gynocology, urology, allergy, ortho, pediatrist, opthomology, rheumatology, pulmonology, dermatology and maybe others. I have taken 3 months off, to rest. My appointments a re-exams', of my request, start tomorrow. Just in time.

Instead of listing testing I've had: I would like a simple list of tests to request. From Vitamin levels to whatever anyone here lists. I've been reading all this, here in the forums for months and there are so many things spinning thru my head..I need a specific and concise list.. Plus, I am having serious cognitive issues.

Due to my inability to move much, last week...I am going to be very stern and insist on getting the proper tests and receiving a "hard copy" of the results. Which, I will gladly post here.

I know they tested my thyroid and some other things...I am just not convinced, they did the correct testing. As, my thyroid has been 're-tested,' twice now. The specialists I've seen have all given me a clean bill of health and admittedly state: "I don't know what it is?" It isn't my heart, my bladder, thyroid, etc... I plan to get more specific with them and ask for details.

My sense of balance returned for about 8 weeks now, along with sense of taste and smell. Today, my balance is off a tad and my cognitive ability diminished. I must have a plan. Admittedly though, I have gotten worse with my abilities. I have taken 2 short rounds of steroids and the side effects are not acceptable.

If you could please make simple posts like:

1: CBC
2: MRI

and whatever comes to your mind. Even examinations. I know I have read something, somewhere that there are certain neurological "response" or 'reflex' type testing: Of which, I know I have not had.

IF YOU NEED MORE DETAILS, PLEASE READ-ON: Otherwise, please post now!

Please Help? I am having to hire someone to take me back and forth to the hospital, etc. I plan to streamline all this, with ALL OF YOUR help, here! And please know, the suggestions, etc. will not be questioned, I will simple ask and request these. I am sick of getting one test and then another in a month or so. I live 28 miles from the clinic's and just getting back and forth makes me too tired. Oh, the MS specialist is 70 miles away. My MRI shows massive lesions, btw. And definitely in the "horns," as well.

Driving makes me too tired and I've been extra weak, as well, lately. Paying a mind to my diet, etc and doing what I can.

Oh and to be brief: I was diagnosed with M.S. in an ER outside my HMO and transferred to my HMO and sent home; basically told I had low Potassium (which I did not, at the time of diagnosis in that ER) then was told it was dehydration..yada yada.

My HMO MD's are relatively inexperienced and the neuro docs are pretty much, just out of med-school. Not implying they don't know anything, just they lack experience. As a medical worker (R.N.), I know, they don't learn it all in Med-School or were absent the day they studied my specific problem.

Even if I have had the test, I would really love to have a "Grocery LIst" of tests to request.

My symptoms have been: Vision disturbance, Balance, taste, smell, numbness of one side of tongue and lips, stiffness in arms and legs, MS hugs to the point I am unable to expand my chest to breathe, dropping everything, pain, bladder, syncopy, frequent boughts of the flu, bowels (infrequent-moreso for many months, last year), cognative, fatigue to the extreme, headache/migraines, ringing in ears, to decreased ability to hear, at times. Ice pick like pains in different places from upper back to legs. Probably more, but this is depressing to think about.

My history is: Tonsillectomy, both knees replaced, carpal tunnel surgery, laminectomy (other procedures to the back). Diagnosed with Fibromyalgia in early '90's and now being told, I don't have fibro/cfs. After asking why I received steroids by epidurals for 17 years...to treat the Fibro etc.

I am at wits end and just want to get everything done without having to do this, one thing at a time, deal. As much as it is more cost effective for my HMO, my costs to get back and forth to the hospital are high, particularly when I have so many appointments.

I've tried to get them to make them on the same day, etc.. but, each department has different people that do scheduling and apparently, it is not cost effective to work with me to make it in my budget, as well. Not to mention, I just get too tired to even go, sometimes.

[Fed Up]

Bump!

[MrsBones]

Well, the trick is that there is no definitive set of test results that says MS. It's a diagnosis of exclusion so drs test according to the symptoms you present with to eliminate other things it might be. So one person may need virtually every test there is while another may only need a standard CBC, MRI and history.

It sounds like you've had extensive testing already. The only thing I could suggest without being a neuro myself is what you've read on the board: Vit. D and B 12, MRI W/contrast, maybe an LP but even the LP is creeping into that "not needed for everyone/may not mean much anyway" territory. I was diagnosed without one myself.

The best thing you can do is to get copies of the results for all testing you've had already and discuss them with your neuro. Ultimately, they are the ones to diagnose MS while other specialists only eliminate things that fall under their specialty.

I stated months ago that I thought you were a Kaiser member in Southern California. You never responded. If this is true, the neurologist will have all of your test results available during your appointment via computers in every examination room or office. TALK TO THEM! Ask them about test done, why other tests were done, how they are going to approach diagnosing your condition. Do they have the info from Eisenhower Medical Center?

If you have another HMO provider, then make sure they have all the info available, then ask the same questions.

If they don't have all of the medical information, direct them to where they need to receive it, and get the same info for yourself.

No one here can direct you on a path to diagnosis when YOU or WE don't know what tests have been done, or the results.

[fishead]

It is true that a diagnosis is made, as the physician "rules OUT" certain issues, based on your symptoms and history. For us to give you tests that should be done, is essentially, foolish. We can share with you, what we have had done and what we believe your doctor should do, but what you really need is an MS-Neuro, who will take your specific information and proceed with testing that would be benefit you.

[Fed Up]

Thank You all for your response's.

Prefer to keep my HMO's name out of public forums.

[MSer102]

I can see why your frustrated because a lot of your story just doesn't make sense.

It sounds like you've already had a lot of testing done and you've seen a lot of specialists. So with the time left before you neuro appointment the best thing I can think of for you to ask your neuro is how its possible for you to have "massive" lesions but none of the many specialists you've seen can figure out why. And why you got a diagnosis of MS based on one visit to an ER but extensive testing after that doesn't back that up.

Some of what you told us that's happened to you has nothing to do with MS so it isn't possible for anyone to give you a list of tests that cover absolutely everything that you possibly might have. And honestly it isn't realistic for you to not even know what tests you've already had and then expect everybody else to do your homework for you.

So I hope you can get information from your neuro and get your medical records together to see what tests you've had and what the results were. It will be really helpful to read the radiology reports about your MRIs to find out what "massive" means. And then compare yourself to the McDonald criteria to see why you do or don't meet the criteria for diagnosis of MS. When you have all of your information together I hope you'll share it with us so you can get some opinions on what you might do next. Right now it sounds like there's just too much information missing for anybody to tell you anything specific.