Another Landslide Progression Of Symptoms

[Chrissy]

I had a rapid progression of symptoms the first 6 months - a year since my first symptoms in Dec. '04. But then things started slowing down I had time to adjust to my new symptoms before I was hit by more symptoms. I had good days and bad days and had adjusted my life around it. In fact the past 2 years I rarely had to go to the doctors other than 6 month/yearly follow ups. Then in January of last year I finally got diagnosed with Cushings Disease, that everyone suspected since 2005, the following April I had pituitary surgery removing tumorous matter shrinking the gland down by half. In June I developed MRSA (staph) in my sinuses from the surgery. I also developed severe overstimulation to all of my senses (smell, someone touching me, light, vibrations, and sound), it reminds me alot of what my severely autistic cousin deals with. They think it is due to vestibular imbalance. By August I was insomniac, lucky to get an hour sleep a night for weeks at a time before getting a few normal nights of sleep. Major change from the sleeping all day and night I could do before the surgery. When I went to see the guy who diagnosed me with Cushings I was on the verge of a nervous breakdown, physical/mental/emotional exhaustion. He blew me off and sent me home to get my gyn to put me on birth control, soon after found out I have high testosterone, possibly Polycystic Ovarian Syndrome. On the ride back from his office on the KY/OH border, 14 hrs away, I developed a "tic" (head jerking and a sniffing sound) which landed me in an ER. Conclusion exhaustion, sleeping pills. I emailed my pots specialist who said it did not sound related to dysautonomia. When I got home I went to two neurologists, neither wanting to address the issue, one is trying his best to find someone else to take me on. I have had two sleep studies, no apnea but I do have respiratory disturbances in my sleep. Use of bipap is my choice. The "tic" is progressing into what appears to be seizures (eeg came back normal), also muscle jerking on a whole side of my body at a time, rocking from the waist up, and head bobbing. It's become overwhelming. One theory is Tardive dyskinesia, but my neurologist can't find anyone who might have experience with such symptoms. In March I had my first lights and siren ride to the ER after I stopped myself from passing out, but then couldn't breathe. Conclussion was syncope made worse by an asthma attack. The following week I was experiencing severe discomfort anytime I went from a standing to a resting position, whether it was a short trip to the bathroom in the middle of the night or a long day of playing with my neices, when I'd lay down it felt like all the blood was rushing back to my heart, everything between my shoulders and my belly button hurt, ankles felt broken, shortness of breath followed by panting for 30 minutes after the other symptoms passed, head throbbing/pain, and nausea. I've felt that before but usually only when I push my limits too far. My local cardio says he thinks my hormones are really screwed up and I should get them tested, but he doesn't say which hormone he thinks is causing it. Then someone suggested that with the severe cognitive issues and my latest symptoms it sounded like low dopamine levels, which just happens to be linked to Cushings. But my local endocrinologist doesn't deal with dopamine and I'm not sure which doctor to suggest testing my levels to. Then to make things worse, my scheduled appointment with my POTS doctor got rescheduled from this coming Thursday to the middle of next month. She wanted to refer me to Vanderbilt anyway, getting too complicated. My family and I are talking if we prefer Vandy, Johns Hopkins, or Mayo to have further testing done. Right now the only thing controlled is my cardio symptoms and that really isn't controlled either. My bp swings high then low and so does my heart rate. It's not bad enough I have one complicated condition with little local medical knowledge, but two complicated conditions. And fixing the one may have made the other worse. Sorry kinda ranting. I just don't know what to do or where to turn. I do think it is time to go to one of the major research hospitals to get some answers. Does anyone else have similar symptoms or any input. I would appreciate any help. Thanks.

[stacdliw]

Wow Chrissy, you have had a rough time here lately. I, too, have had a progression of symptoms within the last year, but nothing like yours! I think it is wise for you to get thoroughly evaluated by one of the major medical centers specializing in POTS/Dysautonomia. I was diagnosed last October at Vandy and I was very pleased with how thorough they were with their testing. Hope you receive adequate medical care soon. Nobody deserves what you been through!

Bev Ray

[HopeSprings]

Oh my goodness, I am sorry you're going through this. My first thought when you mentioned the tic and muscle jerking was Tardive Dyskinesia. I know certain medications can cause this. Are you taking anything new or that can be associated with this? If I were you I would want to see a really well rounded neurologist, with knowledge of POTS and beyond. It just sounds like there may be something more going on. I hope you get this resolved and feel better.

[lieze]

I just want to say I'm sorry for what you are going through.

Let us know how you're doing and if you find any answers or even feel any better or worse.

[Chrissy]

I was on Reglan from January 2006 until this past August (4 weeks before the tic started). But I'm told if it is tardive dyskinesia, the symptoms would have started while on the medicine, not after I got off it. I also was put on an unsuccessful regimine of anti-depressants between 2006 and 2008. The more they changed my dose or the brand I took, the more depressive/anxious symptoms I developed. Once again the symptoms should have started on the meds, not when I got off them.

[Shiner Kitty]

I'm so sorry you're having to deal with all of this!

I really hope you don't have Tardive Dyskinesia, but this says that you can develop Tardive Dyskinesia after stopping medications: http://www.wemove.or...uroleptics.html

Also, if you do a search, you will find lawsuits about Reglan having a black box warning and causing Tardive Dyskinesia: http://www.thelyonfi...ack-box-warning .

I also have POTS, Chronic Fatigue Syndrome, Fibromyalgia, and a long list of other diagnoses. I have a lot of muscle twitching, tremors, and jerking, although mine isn't the same as yours. I've been diagnosed with Restless Legs Syndrome (it can affect the arms and the torso too), Periodic Limb Movements, and Myoclonic Jerks. They're common with Fibromyalgia.

I wish I could come up with some ideas regarding your endocrine problems/hormonal imbalances, but I'm having a hard time concentrating. I hope you're able to find a doctor who will be able to help you!

[Shiner Kitty]

Chrissy, here are some other links with information for you to consider in addition to your low Dopamine levels, Cushings, and PCOS:

Low Iron and Low Ferritin can cause Tardive Dyskinesia: http://www.cmdg.org/...ive/tardive.htm.

Diagnostic Tests for Tardive Dyskinesia and conditions with similar symptoms:

http://www.tardivedy....com/diagnosis/

http://www.virtualme...dive-Dyskinesia

http://psych.med.nyu...nesia#diagnosis

Tardive Dyskinesia can occur after stopping the medication:

http://www.medicalne...hp?newsid=13702

Tardive Dyskinesia after stopping Reglan: http://www.tardivedy...sia.com/reglan/ .

.

Movement Disorders and Low Estrogen: http://journals.lww....isorders.3.aspx .

Movement Disorders and Dykinesias related to Endocrine Problems:

http://www.wemove.or...opic/9/143.html .

Fluoroquinolones (antibiotics, such as Ciprofloxacin) may cause movement disorders and other serious problems:

http://www.fqresearch.org/cns_35.htm and http://www.medicatio...ics_052205.html .

Also, vitamin deficiencies can be related to movement disorders: Vitamin D, Vitamin B-12.

Vitamin B-6 may help symptoms of Tardive Dyskinesia and other movement disorders:

http://www.mayoclini...ECTION=evidence

Vitamin E may treat Tardive Dyskinesia: http://www.highbeam....1-12268403.html .

Ampicillin may help Dystonia: http://www.scienceda...00310162827.htm .

http://emedicine.med...51826-treatment

As I said before, I have several movement disorders. One Dr. even wrote Dystonia in my file, although another Dr. called it Myoclonic Jerks. I've had low Vitamin B-12, low Vitamin D, low Potassium at times, low DHEA, high Cortisol at times, Estrogen Deficiency (Premature Ovarian Failure and Early Menopause), low Testosterone, and Thyroid Problems (Thyroiditis and Hypothyroidism). I've also taken a lot of medications that can cause Tardive Dyskinesia/Movement Disoders.

I have also taken Cipro several times because I'm allergic to many antibiotics. I don't know what antibiotics were prescribed to treat your MRSA infection. Like you, I'm a very complicated case with an extensive list of problems that doctors really have no idea how to treat. I've had to do my own research to try to figure out my symptoms and diagnoses for the last 17 years, and I've gotten progressively worse. The more I research, the more complicated it all seems really. I didn't know that I had so many conditions that could be contributing to my own movement disorders until I was researching for you. I've had multiple adverse reactions to medications, and I developed severe POTS after a medication built up to toxic levels. It makes it even harder when I can't take many medications due to hypersensitivities and apparent metabolism problems. I truly hope someone will be able to help you!

*Note: I had to reinsert all the links in this post because they didn't work the first time. This happened to me before on a post with a lot of links. I have no idea why. They are all working at this time, and I hope they stay that way! I also added one more link at the end.

Edited April 11, 2011 by Shiner Kitty

[sandymbme]

I don't know if it would be any easier for you, and I do not necessarily recommend it for the treatment of POTS, (didn't have a bad experience, just wasn't a perfect fit) but the testing facilities available at the Cleveland Clinic are absolutely top notch, and well accustomed to working around the time constraints of someone who is an out of town visitor. There are even 3 hotels on the hospital campus itself. (Which is HUGE!) And it sounds like you have a lot more than POTS going on, so it might be worth considering the CC. I still see a neuro and a GI doc there, but switched to Dr. Grubb for my POTS/heart care. Not to mention I have always found the staff at the Cleveland Clinic extremely helpful and very nice. And unlike many places I have been seen, they actually send you a copy of the letters they send to your local PCP regarding follow up care, so everyone is on the same page.

Sandy