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tgal
03-18-2010, 02:48 PM
Ok everyone I just need to vent somewhere that people understand. After months of going to the ER, GP, Rhumy, Cardio, Pulminary Doc and now the neuro I am fed up. Although I have been diagnosed with SCLE and not SLE I am in the middle of testing for neuro issues. The neuro said today that he believes that I may be having seizures. Seizures! None of the tests are showing anything (MRI and EMG complete. EEG tomorrow) but seizures! If the type of lupus that I have doesn't affect the organs can someone tell me why I can hardly walk anymore and why I can't remember anything? Can someone tell me why I am having difficulty at my job because I can't think clearly? I feel like I am 70 and I am 41 years old. Test after Test and no one can say exactly why I feel like I do.

I am tired. I don't feel good and I am really sad today and simply needed a place to vent

DrinkofWtr
03-18-2010, 04:39 PM
Unfortunately, lots of things don't show up on tests. My Dr. told me that even though fibromyalgia didn't show up on tests that doesn't mean I don't have it. Even though the Drs. thought, at first, that my problems were psychosomatic, I knew better. I knew how I felt and I knew I was getting sick. Otherwise, why were they always giving me antibiotics, etc.? Just keep on being persistent and eventually something will probably show up on tests. If it doesn't, then that doesn't necessarily mean you don't have medical things going on.

tgal
03-18-2010, 04:44 PM
OK,. can anyone tell me how to edit the thread title? I should not have posted while I was so tired and stressed because it appears that I can't spell or type

magistramarla
03-18-2010, 06:51 PM
Tgal,
I had an appointment with a neurologist on Tuesday. He noted that I have nystagmus (eyes sometimes don't track properly) and an abnormal Babinski reflex, along with the peripheral neuropathy. He wants to test for MS, whcih means more blood work and yet another MRI. When I saw a neuro back in Texas my MRI was normal. When I pointed out that my symptoms might overlap with CNS Lupus or Sjogren's (both of which I have), he simply dismissed them. That made me mad, because all you have to do is look at several articles on the Sjogren's Foundation site or Sjogren's World site, and there is a lot to learn about neurological manifestations of Sjogren's.
I think that those docs really don't keep up with what is going on in research, unless it applies to their own little corner of medical interest. We certainly found that with my Mom-in-law. Every doc that she saw in Fla. told her that the clot that she had in her lung was inoperable and all that they could do was keep her comfortable until she died in six months. My hubby went online and quickly found a hospital in San Diego that was successfully doing that surgery. He took a leave of absence from work, flew from Texas to Fla., then flew with her to Ca. for the surgery. Her docs in Fla. were pretty surprised about it, and she lived for three more years before lung cancer finally caused her death.
It goes to show that sometimes we patients are more motivated to do the research than the docs.
Go forth and research it yourself, girl!
Hugs,
Marla

kim,l
03-18-2010, 09:48 PM
tgal sorry you are having problems with tests and doctors we have all been through it and understand just keep on fighting you know your own body and donot worry about spelling i am having trouble with spelling and memory also and my typing many hugs kim l

rob
03-19-2010, 03:54 AM
OK,. can anyone tell me how to edit the thread title? I should not have posted while I was so tired and stressed because it appears that I can't spell or type

You need to know the secret handshake and have a decoder ring to edit thread titles. I have access to both, so I took care of it for you.
:yes:

Bonita
03-19-2010, 09:49 AM
Rob you make me laugh. Bonita

tgal
03-19-2010, 11:35 AM
Rob you make me laugh. Bonita

Me too. I needed that!

tgal
03-20-2010, 07:34 AM
Well the doctor called last night and after a week of testing because my body is completely acting like there are neuro issues he informed me that all tests came out negative. It appears there is nothing wrong with me. Well gee! Tell that to my daughter since I can't walk for any length of time and I now shuffle my feet. Tell that to my boss when I start yelling out words that mean nothing. Tell that to me when I begin to smell burning tires and none are around. The list goes on and on but according to them I am fine.

I am tempted to say screw them all and stop going to the doctors. It is what it is and apparently I am going to have to live with it whether I go to them or not,

(Thanks again for letting me vent. No one in my real life understands)

Melly
03-20-2010, 09:19 AM
I hate it when the doctors say there's nothing wrong with you and you KNOW something is! I can totally relate to your frustration. Just don't give up! Get a second, third and fourth opinion until someone is able to tell you what is wrong and is able to relieve your symptoms. You should not be suffering.
Many gentle hugs to you.
Mel

debbie-b
03-20-2010, 11:11 AM
I know, none of us want to get a bad dx, but without one, we are labeled hypochondriacs.
Most of us where glad to finally get a dx, so we can tell the doc, "I told you, I was sick".
You know, that something just is not right. Don't give up, go to different docs and be persistent. It is your health that is at stake.

I hope that you will get your answers soon.

Debbie

SandyR
03-20-2010, 11:18 AM
Tgal,

I am sorry to hear you are getting the medical runaround. I agree with Melly, don't give up! We have to fight for ourelves b/c the doctors sure aren't fighting for u, so please don't give up!

Sandy

tgal
03-20-2010, 01:18 PM
Thanks everyone. I really appreciate the words of support. I keep feeling like I am going in reverse. First trip to the rhumy I was told "Classic Lupus". Next trip I was told "SCLE Lupus because your other bloodwork is not high enough". Couldn't breath so I have to go to the Pulminologist. He found nothing wrong but amazingly when the Rhumy put me on low dose steroids I could breathe again! Yes, I am feeling like I am losing my mind but all of you make me feel less alone.

Thanks for that

rob
03-20-2010, 05:58 PM
Hi Tgal,

I had to learn that getting a proper diagnosis was a battle. A battle against incompetent rheumotologists, a battle with people who said it was all in my head, and a fight with people who are quick to judge someone as a malingerer, just because they don't understand, and are unwilling to learn about Lupus and other autoimmune disorders.

Too many Dr.'s and rheumo's have tunnel vision. They fixate on one or two test results, and ignore the larger picture. That's why there is a diagnostic criteria. Unfortunately, many health care professionals don't know about it, or they ignore it. I have seen people who have lived with Lupus for years, go to a new rheumo, and have them declare that they did not have Lupus because on that particular day they had a negative result on their ANA test. Well, the ANA can be quite variable, and is not the sole indicator of the disease. Some people can have a negative and still have Lupus. Yet, so many rheumo's only look at this one result, and draw a very flawed conclusion while ignoring other symptoms. And that's just one example out of many unfortunately.

You know your body, you know yourself. Trust your instincts, be persistent, and be a stubborn pain in the butt if you need to. Don't be afraid to fire a Dr. or specialist who cannot help you, and get as many second, third, and fourth opinons as you need in order to get a definite diagnosis. Don't let anyone try to tell you "it's all in your head". That's a B.S. copout.

It will take time, effort, and persistence on your part, but you can, and I believe will, get a diagnosis. Be it Lupus, or some other AI disease, you will then be able to start treating the symptoms and get on with living your life.

You are not losing your mind, and you are not alone.

Rob

PS-Vent whenever you feel the need, we'll listen.

lisa33167
03-22-2010, 06:31 AM
I so feel your frustration and completely understand. Luckily I found a great neuro, just not sure when I can go back to her due to ins issues. I've gone since Aug 09 with dr's telling me it CAN be one thing when tests come out as nothing or something else, a mixed jumble of symptoms and possible diagnoses. Years previously I've been told nothing is wrong with me over and over and I took that answer as the truth, now I'm ready to find out the truth and move forward, I can't yet.

hang in there and hope you feel better

Nonna
03-22-2010, 11:17 AM
I have found that neuro's don't want to commit to a firm Dx. Mine says I'm treating you for balance, tremors and lack of coordination - my brain send signals to my hands and they do something else. But he won't come out and say parkinsons; yet he has the pharmacy give me handouts that read parkinsons across the top.

Well, what I'm trying to say is find one with an open mind. Probably one of the younger ones; mine is ready to retire soon.

nonna

:skeptical:

tgal
03-22-2010, 06:50 PM
Ya'll are wonderful! Thank you all!

wrightrs
03-23-2010, 10:46 AM
Don't give up. I hope you find a doctor that will listen to you. My drs never listen. Sending you prayers.

mountaindreamer
03-23-2010, 04:26 PM
hi tgal,

don't you dare give up, you know your body, and you know that something is happening and you know that your ability to maintain your present obligations is deminishing.

Of all of the specialists that you have seen, is there one particular one that appears to have compassion for your plight, and whom you feel would be a good advocate? If so, you could call her/his office and speak with his assistant about getting some help.


Every time i mention a problem to my rheumy, she sends me to a specialist for tests. She wants to rule out any other possibilities. Plus, they have to really watch us closely with all of the meds that we take. I always go with the attitude that the tests are going to be fine, and that i am going to be told "it must be your lupus"....i hate those words, but i guess it is better than being diagnosed with something else. I take the attitude that now we have a base line for each test, and will know if any changes start to appear.

So, please don't give up, keep being your best advocate, and keep looking for that dr. whom you can trust...there are some out there. My primary care physician is very good at overseeing everything that i go through. My rheumy is the main physician over my care, but my pcp works with all of the other specialists as well. I finally feel like i have a circle of medical providers around me.

You see, it can happen, but it has taken me about 14 years to get my care to this level. I have walked out of many drs. offices and picked up my files as i left. You feel like someone is kicking you in the gut, but just remember, they can't keep kicking if you keep going back. Find another one.

and, by all means, keep coming here to vent....just type all of that stress right out of your your body through your finger tips.