How to get diagnosed when multiple tests are negative.
 

Hi my name is Tina, I am truly frustrated that I am going through so much and my Doctors can not find a cause to accurately diagnose me. This is something I believe related to my brain and spine!

As mentioned in my bio I began several years ago having back problems then neck problem I had a couple of lower back surgeries next surgery all two degenerative disc disease and adult onset scoliosis that initially started showing symptoms in my mid to late thirties. My first lumbar surgery was in 2010 moving forward many various symptoms began to occur with numbness and burning feeling back, than in my limbs, tingling and pins and needles.

I had epidural injections in my cervical spine in June 2016 the evening of the first injection I developed essential tremors that I continue to struggle with to this day. I’m certain these were a result of the epidural injection even though most of my physicians do not agree this to be the cause of my tremors. There’s no medical reason they have determined causing the tremors.

However, In 2019 I began noticing weakness first in my right leg, and pain in my feet When walking with occasional drop foot. The neck pain continues even after surgery which this pain is in both upper arms and lower leg pain that also continued even after my second lumbar spine surgery that was in 2018 during that second surgery the morning after I had to go back into surgery due to a a large CSF leak.

So than toward the end of 2019 into 2020 I began to get sick a lot feeling faint and lightheaded, dizzy with blurred vision and now double vision with confusion every couple days now. Which when those dizzy spells and feeling faint with increased tremor activity and full body shakiness occurred only maybe once or twice a month. Now that it is weekly lasting for one to two days has left me confined to bed, a few times found it difficult to swallow and food tasted awful at those times with extremely weak arms and feeling very fatigued.

I have chronic daytime sleepiness now as well and was just diagnosed with OSA and due to all of the symptoms my Neurologist is testing for neuromuscular disorders. I was certain he would finally find out what’s happening to me and I’d finally get a diagnosis. My Neurologist orders the following three lab test which where to my knowledge normal. ( or negative for all three) as follows: acetylcholine receptor antibodies 4/14/20 lab was 0.0/ musk antibodies, voltage gated calcium channel antibody.


Voltage-Gated Calcium Channel on 4/23/20 the lab result was 4.8 pmol/l. I’m guessing the VGCC is negative even though my doctor has not confirmed this I read my report online and it appears to me to be within normal ranges. Now he wants to order other tests. I’m so frustrated Not knowing what Bothers me most would be fatigue, most days I am so weak and sleepy I cannot get off the couch and which in return I usually end up sleeping all the time and I still do not know why.

With everything together that is going on with me it’s getting harder to go through life feeling like your own family acts as though I am just making all of this up or perhaps even crazy even though no one has ever said anything to me I probably feel this way because the doctors can give us the reason for feeling the way I do, please does anybody have the same symptoms, what did you have done to finally get diagnosed.

I’m a wife a mom and grandma I love family time and more and more these days I am unable to attend family functions because I can’t move, interactions with people is embarrassing for me because whatever this is causes me to talk slow, and I cannot remember things or find my words. I can’t see clearly and I’m shaking it’s horrible. I just want someone to tell me what I should do what I need to try. Anything to help me figure this out.

Hi 04NeuroAtrophy+, and welcome!

I'm afraid I can't suggest anything helpful for you except to say that it sounds as if your neurologist is trying to find out what's going on--and hasn't indicated that you're just making it up.
Sometimes family members find it convenient (for themselves) to say you're "just faking" but please keep in mind that they probably don't want to have to be concerned about you or to make special arrangements for you, as they might feel they would need to do. They're protecting themselves, without thinking about how much they're hurting you with their attitude.

If they think you're just making it all up, they can go on with their lives and ignore you. Very handy for them.

There's not much point in debating the issue with them. All you can do is proceed with your neurologist and the tests you might need--possibly go to other doctors if that seems called for--until you can come up with some solutions.

Other people will probably come along with more helpful ideas for you.

Just in case some of your readers don't know these abbreviations:

DJD in your Profile - degenerative joint disease
OSA - obstructive sleep apnea

I didn't read all of your post but you mentioned back surgeries and I can attest to nerve damage and hip replacement which I had going on 10 yrs ago. I know it's from the surgery, never had nerve issues before...so I don't need a doc to give me a dx....there is so much info here and I use ALL supplements for the nerve damage and an ibuprofen/tylenol every 6 hrs to keep me sane. I'm 82 soon and never had nerve issues until the surgery. Plus I live with advancing Osteoarthritis but NEVER did a back surgery, thank goodness....hip surgery did me in.

I swear by Grape Seed Extract and Inosine which has helped me so much with the Nerve mess.

Again read so much on the PN group. Some swear by ALA and I've used it but not a lot. Inosine has worked good for me.

Hi Tina

Welcome to NeuroTalk :).

I am sorry to read about what you are are experiencing.

It sounds to me that your neurologist is doing a good job in trying to work out what the basis of your problems is.

I trust that will lead to an evidence-based treatment for you.

Best wishes.

Are you on any medications now?

If you continue to get no answers with standard medical care...
Some additional consults with alternative care providers might be worth consideration - maybe naturopathic, acupuncture, nutritionist..