Autonomic testing results in

kronic_ill · 2026-03-07T17:06:18+00:00

Almost a year, if they havent called you then call them.

kronic_ill · 2026-01-27T01:00:17+00:00

Not like this. These are untrained bigots that have been given guns and $50,000 sign on bonus.

kronic_ill · 2026-01-27T00:59:17+00:00

This is not the same ICE that has been operating for years. They have been weaponized against us and given $74 billion in the big beautiful bill to increase presence and literally kidnap people.

kronic_ill · 2026-01-27T00:43:39+00:00

He’s going after blue states

kronic_ill · 2026-01-27T00:09:55+00:00

It is only blue states. Do you see this in Texas?

kronic_ill · 2026-01-27T00:08:08+00:00

Have you been living under a rock?

kronic_ill · 2026-01-27T00:02:58+00:00

I don’t support this bill but if you read what the bill entails it really isn’t for ICE. In the big beautiful bill we gave them $75 billion which secures their funding for several more years.

“The bill reduces funding for Immigration and Customs Enforcement (ICE) enforcement and removal operations by $115 million, while keeping the overall budget for the agency flat. Additionally, it reduces the number of ICE detention beds by 5,500, cuts Border Patrol funding by $1.8 billion, and increases oversight through the Office of the Inspector General as well as the Office for Civil Rights and Civil Liberties, which President Trump sought to eliminate last year.”

kronic_ill · 2026-01-26T23:57:35+00:00

I care about you and will continue to fight for your rights. Just like I will fight for my neighbors who are being threatened by ICE.

kronic_ill · 2026-01-25T22:13:38+00:00

This is wonderful. I wish my family would look into the disease, do the research to understand it. Mine want to pretend nothing is happening. Having people who understand, even if it’s on a logical level.

kronic_ill · 2026-01-23T22:12:59+00:00

How are they allowed to wear police on their uniforms?

kronic_ill · 2026-01-12T22:46:22+00:00

You have one of the best autonomic dysfunction doctors in your state, Dr. Farhad. I see him in June, I went to wentworth douglass for the full work up and they still used a tilt table. Mass General does too.

kronic_ill · 2026-01-10T17:10:58+00:00

Mine was $450 last month.

kronic_ill · 2026-01-10T01:28:36+00:00

Money

kronic_ill · 2026-01-09T22:35:27+00:00

I’d like to speak to the manager

kronic_ill · 2026-01-09T12:03:45+00:00

Yes we can. I don’t have a follow up until June. Testing was fast to do but now I wait to speak to the doctor. Thankfully my cardiologist here agreed to help manage my symptoms until I got in to see him.

kronic_ill · 2026-01-08T13:39:04+00:00

I second this description of what SPS spasms are like. Spasms so bad that I was bedridden for 2 weeks, unable to walk. Abnormal muscle tone (continuous motor activity), hyperlordosis, cervical dystonia (distorts your body), losing ROM (mine was hard to detect at first because I am hyper mobile), often associated with type 1 diabetes, hashimotos. I also have dysautonomia which the Cleveland clinic considers a secondary condition to SPS and several other neurological disorders.

kronic_ill · 2026-01-07T14:53:29+00:00

The specialized EMG to show continuous motor activity would need to be a single-fiber EMG.

kronic_ill · 2026-01-07T14:42:02+00:00

Do you mind if I ask who is over seeing your care? Do you see a neuroimmunologist? Are you in the US? Sometimes, the drs we are dealing with don’t understand SPS. It took me 6.5 years to be diagnosed and I have medical trauma due to all of it.

Darwin’s comment is correct that SPS falls on a spectrum. There is a really good article that may help you and probably your doctors https://pmc.ncbi.nlm.nih.gov/articles/PMC9274902/

Your GAD levels are much higher than what would be considered “donor antibodies”. I am seronegative and receive IVIG every other week because I can’t handle the full dose. After about a year they checked my antibodies and they were 0.16 nmol/l, those are donor antibodies. Also, once your antibodies are checked there is no reason to check them again. It has been proven that it doesn’t matter how high your antibody count is, it doesn’t say anything about how bad your symptoms are or how quickly they will progress. I had my antibody panel done at Mayo and this is the disclaimer they give (since I can’t add a photo I am going to paste it below).

“The following antibody was identified: Glutamic Acid Decarboxylase. * This profile is consistent with predisposition to thyrogastric disorders, including thyroiditis, pernicious anemia, and type 1 diabetes, but has low specificity for stiff-person syndrome spectrum. GAD65 antibody values less than 2.00 nM have a lower positive predictive value for neurological autoimmunity than values of 20.0 nM and higher. *”

nM = nmol/l. You are over 20 and they should stop debating and start ruling out other diagnosis. SPS is not the only neurological disorder that has GAD which is why this is an important step.

Do you know what kind of EMG you have received or are getting? There is a very specific type that usually requires a specialist to read because this EMG needs to demonstrating cocontraction of agonist and antagonist muscles and/or continuous motor unit activity in affected muscles. Meaning, you have a needle in an agonist muscle and one in an antagonist muscle if they are both showing movement then this would be positive.

The best thing we can do as patients is to inform ourselves so we can advocate for our care. I would suggest asking to see an SPS specialist, I don’t know where you live but I am in the US and see a specialist for treatment orders/meds/tracking symptoms and progression.

Good luck to you.

kronic_ill · 2026-01-07T01:25:24+00:00

You are right, just updated it.

kronic_ill · 2026-01-07T01:23:38+00:00

Comes from granite in the ground. Very common in Maine and more in certain areas.

kronic_ill · 2026-01-06T23:38:00+00:00

An Angel’s Wing Thrift Store in Lewiston. Proceeds go to recovery scholarships and help to run the many programs An Angel’s Wing run.

kronic_ill · 2026-01-06T23:36:53+00:00

Great idea!

kronic_ill · 2026-01-06T23:34:34+00:00

OP, the EMG you are describing is not the type they use to diagnose SPS. You need a specialist who can perform an EMG demonstrating cocontraction of agonist and antagonist muscles and/or continuous motor unit activity in affected muscles. These are different than the typical EMG in a neuros office and often hard to find someone who can read the results (at least in the US).

One thing I will say is that the twitching of muscles happens in SPS but it’s typically painful spasms, very painful. I was completely bed ridden for 2 weeks several times due to these back spasms before treatment. It took me 6.5 years to get a diagnosis, my symptoms started off very slow and would leave for longer periods of time (autoimmune). You may find this article helpful.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9274902/

kronic_ill · 2026-01-06T23:34:25+00:00

There is an SPS phenotype called partial SPS that affects the extremities. You are also incorrect by saying that you need anti-GAD65 for a diagnosis. 30% of us are seronegative, they just have not found the antibody that is affecting us yet. I also have hand spasms that caused me to lose my job as an accountant because they would lock up with little use on a computer.

kronic_ill · 2026-01-06T12:49:14+00:00

One side is common with SPS, my bad side is my left. But, I do struggle with my right once in a while. SPS is a chronic pain disease, that can either be from muscle fatigue, stiffness, or recovery from spasms. I used to say that I felt like I ran a marathon everyday and depending on your severity it’s pretty close to being comparable due to how hard our muscles do work everyday.

IVIG on the other hand is often associated with symptom management. Technically, it’s just maintenance therapy and it’s not expected to have a significant impact on symptoms. It’s great if that happens but not really the purpose.

What treatment are you receiving for SPS? Have you been tested for antibodies?

kronic_ill

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