How Do You Make Sure You Get the Right Tests? or any Test?
 

Hi eveyone...I am being sent to John's Hopkin's for further evaluation by my local neuro...due to increased fatigue in arms (esp with repetative activities) and at night....I have to prop a book up on my pillow and notice it the most...there have also been a change on mri in past 5 months.....some new lesions....he did the emg and ncs and doppler on major arteries, but then said something about a spinal tap and backed off and said lets see what they say...
I want to make sure they at least do the bare minimum of tests....heading for PN testing it looks like, what about eeg and evoked potential? They are putting me with the same doc, unless he changes his mind after reviewing my notes, who I saw for a shaking disorder in April...he called in somatic and possibly related to my pots....didn't offer any help at all or even a different type doctor....that is why I don't really want to see him...I was so dissapointed I cried....at the appt....

I have been looking for help for that problem (I wake up shaking and weak) everyday for so long I thought I was probly going to get some real help......he make me feel so unspecial...like there are so many people coming there looking for miracles, etc....and so many unanswered dx...I mean I haven't even had a sleep study and I wake up to this everyday! I feel like I am jinxed, but hopefully my new records will at least have them test me correctly...

.I have thus far been dx with fibro and cfs since 1995 with only one old lesion that couldve been migraine consistent. The new mri also listed possiblity of vascular disease.....and I have a drooppy left lid and a dent on my nose I am supposed to see rhemy for..I am being hit all at once.....seems unreal that there are all these tests but no one can give me one...Well my appt is Aug 22 i can only pray I get some help here....or I guess its on to another doc after Hopkins????

Sorry for all this ramble but I have never found out what the morning problem is or anyone else who seems to have it....and I am on beta blockers, anti anxiety meds,,,,i have been thru the mill......maybe it is cardiac...I do need to find a new cardiac doc re: POTS as mine left if I can just come up with the will power....:eek:

ANY ideas would be appreciated I will make sure to be more collected this time Hopefully he will put me with another doc....!!!

Anybody, Somebody, Scared ,need Support!
 

Bumping for myself any ideas anyone????

There are many other diseases that mimic MS, so they should be trying to rule those out first, i.e. Lupus, Lyme, B12 deficiency, etc.

With a history of symptoms like yours, that could prove indicative of MS, they might now test for:

1. Lesions in the brain or spine; MRI with contrast of the brain, (and spinal cord, if your symptoms are indicative of spinal problems).
2. O bands in the spinal fluid; Spinal tap.

Positive findings from these tests are what you'll probably need to prove in order to get a MS dx at this point in time.

Personally, I'd want a MRI (as above), but if nothing shows in that, no matter what else they determine (from ANY other testing), you aren't likely to get the dx anyway. If your symptoms have been ongoing for many years, it's not likely to be meningitis or an infection in your spinal cord (you'd be dead already) . . . so I wouldn't see much point in doing a spinal tap. The ODD person gets a dx from spinal tap findings alone (i.e. no lesions), but not often at all.

Besides ruling out everything else, and doing the MS-specific testing, they should be able to objectively test for weakness and shaking, and treat you for those (and any other) symptoms anyway.

MS can be hard to dx, for some people. Sometimes it takes a long time.

Cherie

Thank you Sherrie
 

for the advice....

I guess I didn't make it too clear that there were some new lesions on my recent mri , from April to July they popped up. Have been tested for all of the usual things....lupus, RA, sed rates, ANA, Sjogrens, some more....

I guess my main worry is that he will do NOTHING....as NOTHING was done about my morning problems...I guess I better get a better attitude...!!! After all my neuro is sending me there for PN testing...they gotta do something !!!

Well, I will see what happens, would it be bad to have a list of tests you want....is that "unethical" or will it offend said doctor....he was a pleasant person...I do have a tendency to research alot and go in 'Knowing too much for my own good!" ...I don't want to take away his privilige....and offend him.

What does the report say as far as the type of lesions. "Lesions" just means damage, but they will want to see the right size, shape and location before they might suspect MS.

If the lesions are indicative of MS, then the testing (evoked potentials, etc.) should show damage. Chances are that they would want to do a spinal tap for final confirmation, although I refused one and got the dx anyway.

Cherie

A simple article I ran across today, "How MS is Diagnosed":

http://www.msfocus.org/info_diagnosed.php

Cherie

In my experience, docs don't like to be second-guessed so I'd say that your best bet is with a trustworthy doc. I try to remind everyone that for us, our neuro is a lifetime relationship and the right one is essential.

When you have a good relationship, you can freely say, "Hey, if you don't know, let's find someone who does!" (in so many, diplomatic, buttkissing words)

My neuro and I are exploring our next lines of defense and she recently asked me if I'd be more comfortable adding another doc to my team, a well-regarded specialist 3 hours away. Because we have a good doc-patient relationship, I was able to say, "let's see what you come up with and how confident you are with it and go from there," she was fine with it and we decided to meet again in Nov.

Where I'm going with all this blither is that I defer to her expertise and she reciprocates by including me in the process. It's a good relationship.

Lesions
 

Are in some area that may have to do with ms, too tired for specifics, but the report did mention vascular disease as a consideration as well as a demylenting one or how ever that is spelt!

(Probably best to wait until you are not so tired), but . . . here's some info on lesions, and what they might indicate (differential dx):

http://spinwarp.ucsd.edu/NeuroWeb/Text/br-840.htm

Cherie

I don't have anything to add except....I do hope you find answers soon, lailavia. Not knowing is he!!.

:hug:

lailavia, I get that body shaking when I wake up also, a whole body tremor. No clue as to what it is, but it's been going on for over two years now. Like everything else I just live with it, and without a DX.
Pat

Body shaking
 

Hey pals

Sorry you have to deal with it too...how long does yours last? Sometimes mine lasts for 45 minutes before i can get up and going....it seems worse if I wake up with no alarm not knowing what time it is....so I try to set an alarm on my cell phone to wake me up and If I lay there after using bathroom it passes quicker...its almost like a huge panic attack. but not...cause I have had those....more like a waking anxiety attack...but its everyday that is so weird! I just saw neuro today again tried to explain it away as somatic...not made up or not real, but unexplainable.....I personally think there must be some reason, even if its post traumatic stress, or a sleep disorder, but he keeps insisting its not. I am getting worn out trying to find help,,,,,do you have MS? I have a lot of the sx but 2 neuros do not think at this time I have it. I am getting a small fiber biiopsy test at least from my trip to Johns HOpkins and redo of tilt table...hes also questioning my POTS dx....bleah night. I also get Sob and cough and feel like I am coming out of a coma!! I don't even have to get up and work but I feel like I just can't lay there maybe it is partly psycho! ( i mean pyschiatric :o )

What have your docs said? I take beta blockers and xanax at 6:00 am and it still happens....

It only last for 20 to 60 seconds for me. I'm not DXed, but listed as possible/probable, and that is probably where I'll stay..............no "O" bands.

Yep doc's think we make things up don't they? I'd love to wire them up and let them feel for themselves. Ahhh I can dream.

I'm on LDN from my PCP, which has made a big difference, my lesions were getting worse before the LDN, haven't changed since, and no major attacks either since I started it 20 months ago.

I've learned to live with allot of symptoms, you get used to them, they just slowly pile up and become part of your life. It kind of freaked me out a few years ago when they really hit all of a sudden and all at once. Oh they were there mildly here and there for years, but they came crashing down hard for about 5 1/2 months and never left after, just eased.
Pat