Newly Diagnosed with POTS

[Eddie_PA]

Hello,

I have just been diagnosed with dysautonomia - POTS by a well respected hospital. This was done through tilt table testing, I am very confused because my symptoms seem to be much different than those that I was reading about POTS. Below is a quick summary of how everything started.

March 2020

- started having heart palpitations

July 2020

- shock like electric current through my body and into right leg, toes would go numb for a while and I would wiggle them to restore function. This kept happening maybe once a week.

October 2020

- Started waking up with left arm and left hand numb and with “needle” like feelings in it.

November 2020

-Right arm and hand started doing the same thing.

December 2020

-Left leg now started having electric current into toes and numbness. 
-Loss of sensation in hands and feet. I can still feel things but they just feel different ( hard to explain this one to doctors)

- Tingling started in middle of forehead and top right side of face. This area is sensitive to temperature it seems.

January 2021

- Hands started burning

- Insomnia due to burning pain

- Muscles are constantly twitching, especially in the feet. Ive attached a video for reference, the twitches never stop, and get really bad after any workout.

- Worsening vision

- Fatigue

- Very easily get sore.

- Tachycardia 

- Parasthesias

- Stomach constantly making sounds

I have had pretty extensive workup with multiple neuros after the first was unable to make a diagnosis.

- Clean MRI of head and spine

- CT scan of chest and abdomen. Normal.

- Final fluid was checked, no issues.

- 2 normals emg and nerve conduction studies.

- Normal skin biopsy, no small fiber nerve damage apparently.

- Tested for all the standard things, lyme, stds, all bloodwork is normal except mildly elevated billirubin. 

- Tested positive for ANA , and then tested negative a month later, which they told me was irrelevant.

This all eventually led to a tilt table test because of the tachycardia, and I was informed that it showed POTS. Im concerned because i do not seem to have the typical symptoms described here. While my conditioning has certainly worsened, I am still able to do many physical activities like riding a bike, walking, but I do get fatigued quickly.

My main symptoms of concern are the electric shocks that I now get through my body, the random burning hands, and the nonstop muscle twitches. Does anyone have any similar experiences with this and what has helped them.

Any help is appreciated.

 

[MomtoGiuliana]

So sorry you are not feeling well.  Good you have had what sounds like thorough testing and have a diagnosis.

The symptoms you are describing are not uncommon with POTS.

An exhaustive list of POTS symptoms per various sources is here:

POTS Symptoms, Diagnosis and Prognosis - POTS - Dysautonomia Information Network (DINET)

Have vitamin deficiencies including B12 deficiency been ruled out?  Vitamin deficiencies can make POTS worse and cause other symptoms as well.  Low B12 can cause tingling and other neurological symptoms.  Some members here, including myself, have been diagnosed with low B12, and supplements did in my case help me to feel better.

[Eddie_PA]

Hi,

 

Thank you for the response. I have had the vitamin testing done, results are within normal ranges for all the relevant vitamins such as b12, magnesium, etc. Based on what what im gathering they suspect pots is not the cause of symptoms but potentially the other way around. They suspect an underlying issue which has yet to be identified. Very frustrating considering there really isn’t any additional testing that can really be done I don’t think. 

[Guest KiminOrlando]

My guess is the fact that you had one positive ANA probably means it is autoimmune but with commitment issues. More than likely it will pop positive again, but nothing specific will show for a diagnosis. This happened to me. They initially suspected MS. It took several years and several hospitals to find my diagnosis. My diagnosis is currently Undifferentiated Connective Tissue Disease. Some Rheumatologists don't believe in giving that diagnosis. Some don't believe in sero-negative autoimmune diseases. You may have to give it some time and let things develop. I too had a well respected hospital initially decline to diagnose me with autoimmune. I ended up at a university hospital that had a nationally ranked Rheumatology department. They were more interested in making a clinical diagnosis as opposed to relying on bloodwork. All I can tell you is these things take time and I know that is hard to hear. I have the tingling and burning too.

[Eddie_PA]

Hi Kim,

Do you take any medication for the tingling and burning? They currently have me on Cymbalta 60mg, I guess its a standard med for “nerve pain”.

[Nin]

Hi 

I have the burning pain in my thighs, I can go ages with no burning and then back again. Its pretty intense as well. I do get it in my lips but it was toothpaste allergy causing that,  not so bad now I've changed toothpaste. Im also constantly twitching, especially if I do too much. Even if I cough my back starts twitching. 

[Guest KiminOrlando]

@Eddie_PA I am taking Gabapentin which is the generic of neurontin, I think. I was on Lyrica until it made me gain a bunch of weight. It makes the burning manageable most of the time. The tingling is still a problem. I also have Reynaud's Phenomenon and craniocervical instability so the doctors try to blame it on each other's specialty.

[CDNPortGrl]

This is an older post but I was curious to know how your doing and if you came to another conclusion? 

It might be worth exploring if bone Spurs are on the spine - possibly affecting nerves. POTS is a misfire due to the vagus nerve for instance not working correctly. 

Also, people are often diagnosed with POTS or Fibromyalgia when they have a CSF leak that’s undetected. The thing about that is that typically headaches accompany it.

Finally, it might be worth exploring matters such as Craniocervical instability as that can only be detected in a 3T MRI machine or a stand up MRI, or a digital motion x-ray. Sometimes a Flexion/Extension x-ray can show it but I don’t know if it’s as accurate.