They're back & I don't know what to do so I think I will just cry

[maitrimama]

Last summer/fall I went through all the craziness of testing and doctors because my body was doing weird stuff with all sorts of unexplained sysmptoms. I am not good at all the Dr stuff so I set limits and stuck to them. In the end both my GP and the Neuro said it wasn't MS. Once I accepted that it wasn't MS I was even willing to think about stress and anxiety being part of the mix. The bottom line being that either the symptoms would go away or a symptom would appear that couldn't be ignored.

Slowly a lot of symptoms improved though some (TN, recurrent headaches and some spasticity) never totally went away. Over the past couple weeks they are coming back with a new doosie thrown in for good measure. I guess this just the way it is going to be. I don't have the energy to start going to the doctors again and I feel myself getting more depressed by the minute.

I would just sit and cry but that would make my head hurt even more than it already does.

[JerryD]

Hi maitrimama,
Are you saying that you do NOT have any diagnosis ? If the docs are stumped over your symptoms, you need to take matters into your own hands. Try asking the docs for all of the blood tests. Test for hormones, vitamin D, Lyme disease, and, believe it or not, sleep apnea.
You deserve to live a life without total aggravation, and it sounds like that is not where you are at. There has to be something you can do to help yourself . See if you can use LDN, it helps with endorphin production, which may help with your mood/ happiness. Good luck

[Cat Mom]

Hi M, did the testing you had last year include MRIs, lumbar puncture, Evoked Potentials, etc.? If so, did anything show up? If you're not satisfied, please consider a 2nd opinion. You know your body better than anyone so if you feel that something has changed or been overlooked, you have to be your own advocate. Good luck and keep us posted.
Jen

[maitrimama]

Thanks Jerry & Cat Mom - Last fall I had all the usual tests; extensive bloodwork, head neck and spine MRIs, all sorts of eye tests, VEP and LP. The usual suspects were ruled out, Lyme's, thyroid, B12 defiency etc etc. There were questionable areas on the brain MRI but radiologist felt they were probably from migraines or were vascular. The only thing that showed up on LP was Epstein Barr, I found out late that the Neuro didn't order as many tests on LP than I had thought he did. So I didn't have a Dx, the Neuro offered to refer me to a Rheumotologist but I had had enough.

By the end I felt dismissed and embarrased, and I do not want to put myself back there again.

[maitrimama]

Oh, and I forgot that my Vitamin D was low at 17 and my iron was on the very low side of normal. Vitamin D I have always had a problem with but my Iron has always been up in the very heslthy range. None of the Drs eere terribly concerned about it.

[Cat Mom]

That's awful, it's not acceptable to feel dismissed and embarrassed over being concerned about your health and trying to do something about it. You would think that with all the symptoms you have, plus questionable areas on your brain MRI, it would warrant further attention. I'm cringing at the thought of the doc not ordering the right tests from your LP, considering how flipping painful it is, who would want to go through another one!
Jen

[maitrimama]

My Psychiatrist looked at my LP results and couldn't believe how few tests were ordered. The LP was a horrible experience, it took atleast 4 sticks (i lost count) to get the fluid so I am not going down that road again.

I have found this whole process extremely isolating and it is getting worse. There really isn't an answer and I have been raised to keep the outsides looking good, so I do just that. I keep smiling and my emotions buried deep inside.

[Mynamegoeshere1]

LP

My LP was not painful at all, but they used an xray machine to guide them in and that guided them in the right place the first time. They also deadened the area first. I felt that shot, but remember asking the Dr. if they had started the actual LP yet and she was like, "We are done!". I was in shock. I did not feel that part at all except for some mild discomfort at home later in the evening.

If you do get the LP again, I would suggest you ask to be deadened and use of the xray machine.

[lusciousleaves]

Maitrimama, I know exactly how you feel. The same thing is happening to me right now, and same new fun symptoms. It does make you want to cry. I'm sorry to hear you're still going through this and thought you were close to getting some answers.

My LP would have gone better had I taken a sedative first. I could do it again, but because of the first experience, I will know to ask for valium or something similar to get through it.

[mkkga05]

I know the feeling. I went into a depressed crying Jag on Friday and threw myself into a migraine. Hang in there

[Echo2099]

Maitrimama,

I'm sorry you are going through all of this frustration and pain. I went through it for a couple of years before my Dx, so I know how discouraged and alone you feel.

Maitrimama, you are the only one in charge of you. If you don't speak up for yourself, no one else will. You have to be your own patient advocate. Find a new neuro, one that works with MS patients. You may have to try a neighboring town, but please keep trying to find out what is going.

Yes, all the tests are not only annoying, but some can be painful too. But you are already annoyed and in pain anyway, and if you just let it go....it isn't going to get any better.

Please consider give it another try. You may not have MS, but at least you would have the appropiate tests to confirm it one way or another.

Ask your previous Drs for all your records and take them with you to the new Dr. And keep a copy for yourself. I always ask for a copy of all my MRIs, Scans, Xrays, LPs, and lab work. I also ask for a copy of the report. That way if anything gets lost along the way, I have a backup copy.

I hope you will reconsider and try again to find out what is causing your symptoms. Your health is so important, please don't let it slip away without a fight.