Please Help! Rocking Vertigo, Tachardia, Tremors, Muscle Twitching

[dawniepooh]

Hello,
I am wondering if anyone out there can help me because I have been to so many doctors and they don't how to put the puzzle pieces together because they say my symptoms don't all point to one thing and have even been to the Mayo Clinic in FLorida trying to get answers and still yet no answers and I am still suffering everyday!  
Anyways it all started last September after having a cold....symptoms started as numbness in my hands at night, then tingling feeling in my left arm, then my blood pressure started going up (I have never had blood pressure problems til then), I also noticed when I bent over there was a tingly feeling in my legs at that time, next was a tingly sensation going up my spine, then in the middle of Oct I woke up one morning feeling dizzy but not really dizzy just like something was off and this been going on ever since then but has only gotten worse to now it feels like my head is rocking back and forth in side 24/7 for over 6 months now and I am not exaggerating. I do not have a spinning feeling but more like a rocking on a boat feeling.  I also started getting what I now know is fasciculations or little muscle twitches randomely all over my body for hours at a time.  By the end of October I started feeling like I was about to pass out when I would stand up and that's when we realized my heart rate was going nuts especially after standing. I have had electric shock feelings go up my spine and a feeling of someone putting cold water down the right side my back. I am sure there are a lot more symptoms I just can't remember every thing at this point and I am at a loss and I want my life back that I had before this or even just putting a name to whatever is going on would help that way I can atleast be treated (hopefully).

Here is the lists of tests done and what has came back pos/neg.

All Inner Ear tests possible at the Mayo and doc said it wasn't my inner ears but I had a mild right beating nystagmus.

30 day holter... found Super Ventricle Tachycardia while a sleep heart rate was 159

EKG...normal  (actually 3 that were normal)

Chest Xray ...normal twice

Caloric Testing here at home but they used ice calorics and couldn't figure out how to read it (waste of time and money) apparently but they assumed by the tests between my left and right ear that I had a loss of 50 % in my right ear but apparently not when I went to the Mayo Clinic and they done the caloric testing it was normal.

CT Scan ....unremarkable (normal)

MRI without contrast (looking for MS)  NORMAL

Echocardiogram....mild mitral valve prolapse (docs say everyone has this) this has been done twice now and everything is normal in both

All sorts of blood testing.... Lyme, Hepatitis, Low Vitamins so on and so on but nothing except low Vitamin D which was a 9 in November which my GP failed to tell me.

Then more blood work at Mayo Clinic where the only things that showed up was the low Vitamin D, low Ferritin, Low MHCH and low Creatinine (but the said that was a good thing that you wanted that to be low.  
They tested Cortisol which was also normal

EEG....Normal

EMG....positive for left leg tremor but they only tested my left arm and left leg and refused to check the other side even though I have had symptoms in both.

Autonomic Testing/ Tilt Table Test....came back negative from 0-10 with 10 being the worse mine was 0.  I am still not sure about this though because it showed that my blood pressure lying was 120/80 and went down to 94/70...isn't that NMH???? That is more that 20 points dropped systolic...

CT Scan of Stomach...I have had to have two surgeries on my stomach in the past so they wanted to make sure every thing was fine there but it showed a hiatal hernia and something else but I haven't go the results of that yet.

Pelvic Ultrasound ....I have endometresois (sp) explains bad periods

CT Scan Again per ENT doc at Mayo Clinic (I think he was looking for a fistula)  but was NEG

Eye Exam bc when this all started my eyes were getting extremely dried out and they hurt and my left eye fells swollen and looks droopy if you ask me but the only they found was I had a tear gland dysfunction

I was perfectly healthy up to September and all this started and has gotten progressively worse.

I also would like to add that I have tried a number of medications with no relief including Valium, Mcklezine, Diamox, Atenolol (caused my blood pressure to drop way too low), Prozac, Zoloft (I only used both of these for a short amount of time b/c Zoloft caused me to keep throwing up and Prozac just done nothing.

I have also had creepy crawling feelings in my head and sometimes I feel the hair standing up on my head at random and it also feels like someone is squeezing in on my head above my ears.

I mean how do go from perfectly normal to all these neurological symptoms that I would have never known about had I not starting getting any of these symptoms.

My feelings on this is that I should have a number of other tests including a MRI with contrast, MRA, Spinal Tap, SPECT Scan but doctors just want to say it is anxiety but I know better.  Anxiety causes high blood pressure and I have pretty low blood pressure which stays under 120/80 but most of the time it is around 113/75. My heart rate in the mornings esp. goes from waking up lying around 65 to 100 just sitting and I have to wait for my heart rate to go back down before I can get out of the bed.

Apparently I don't have POTS because of the TTT but I still don't understand how my heart rate goes up over 30 beats randomely throughout the day when I stand!

Please ANYONE HELP!

[S. Kaul, MD]

Hi there!

Well, without knowing the relevant clinical details or a detailed clinical evaluation it would be difficult to comment on the situation or determine the cause. With the described symptoms, possible causes that may need to be considered include stress/ anxiety, low/ high blood pressure, low blood sugar, neuropathies, myopathies, neural compression, infections/ inflammations affecting the nervous system, TIA/ strokes, medication side effect, cardio-vascular issues, hormonal/ endocrine imbalance, micronutrient deficiencies, a few autoimmune conditions etc. A few of these may be ruled out by the tests already done, while other possibilities may still need to be considered. Unfortunately there is little help that we would be able to provide online w.r.t the diagnosis or the management plan. The best I can suggest is to consider a detailed evaluation by an internist, preferably at a university/ teaching hospital for a detailed evaluation and depending on the cause(s) identified, a management plan can be drafted accordingly or specialist care may be sought.
Hope this is helpful.

Take care!

[dawniepooh]

Oh yeah they tried me on Fludrocortisone but that made things worse so was taken off it after only three days!