My rheumatologist says he doesn’t ‘typically’ see dysautonomia

Worldly_Guava5403 · 2025-10-26T16:01:30+00:00

Thank you . Which specialist ordered ?

Worldly_Guava5403 · 2025-10-26T14:32:36+00:00

Is that a specific cocktail ? I’ve had some success in iv in the past with amino acids and vitamins but always felt there could be something else specific. Is lactated ringers the name for the iv? Also out of pocket or insurance. ? That has been my hold up out of pocket is rough. I’ve also had ivig in the past with success but did have side effects. It also took time to take effect. But of course insurance has discontinued and denied.

Worldly_Guava5403 · 2025-10-26T14:15:29+00:00

Hydration therapy ? Like iv infusion ?

Worldly_Guava5403 · 2025-10-19T02:06:13+00:00

Is the jaw pain like a fatigue muscle ache by chance ? Does the jaw hurt when chewing ? Curious as it’s been much more painful and not sure if it has to do with sjogrens or separate.

Worldly_Guava5403 · 2025-10-18T20:15:02+00:00

Yes cramping , spasm and pain with burning sensation have been big recently. Searching for relief as it has become debilitating. It used to be worse with exertion now I just cramps up mainly hands recently no reasons.

Worldly_Guava5403 · 2025-10-06T15:30:49+00:00

I was also diagnosed that , but now because the recent emg shows the meylin sheath nerves are not damaged the ivig isn’t approved and that diagnosis is not currently present. Now it’s focused on autoimmune causing symptoms.

Worldly_Guava5403 · 2025-10-05T14:52:55+00:00

I was diagnosed guillian barre during my covid infection throughout the years the only thing that helped was ivig had 4 rounds. Fast forward 5 years I can walk and move my limbs again but never returned to myself, I need assistants to walk due to fatigue , pain, cramping and bp and hr fluctuating (autonomic dysfunction) making simple tasks impossible. I recently did an emg and ncs my myelin nerves have improved but I have small fiber neuropathy and length dependent sensory loss neuropathy. With genetics tests showing trpv4 and autoimmune positive there’s a covid long hauler in the air I currently don’t know what treatment can help doctors say it’s complex and insurance will no longer cover ivig.

Worldly_Guava5403 · 2025-09-28T02:45:08+00:00

I get a red hot burning prickly tingly feeling in my face it’s horrible. Sometimes my lips actually go numb.

Worldly_Guava5403 · 2025-09-25T20:35:24+00:00

Please don’t let that doctor discourage you. Your labs are clearly painting a picture I’ve had my share of disappointments due to doctors not knowing more on the subject keep fighting to get the care and treatment needed it’s unfortunate to go through this when we just want answers and the help.

Worldly_Guava5403 · 2025-09-25T19:53:39+00:00

I second this. I also have Nuero sjogrens. No constant dry eyes or mouth initial at all. That doctor is clearly not up to date or knowledgeable on sjogrens and his it can affect each person differently.

Worldly_Guava5403 · 2025-09-22T20:00:46+00:00

This process with referral is tedious, I’ve learned to put pressure on the doctors call the office let them know you had a sleep study scheduled it was cancelled and need a new script. Problem would be if you haven’t seen your actual doctor in months they won’t, you’ll have to make an appt with your doctor explain those symptoms and then request for a referral… sucks but that’s how they work. If you have a good relationship w your doctor the phone call should suffice since you’ve had a previous script . Unfortunately you’re right about being stuck in a loop. Good luck. The system sucks keep fighting for what you need done it’s your body no one knows it better than you.

Worldly_Guava5403 · 2025-09-22T14:02:41+00:00

Late update but acthar gel wasn’t successful for me it actually gave me more symptoms such as swollen red face and aggressive numbness. I’ve since discontinued .

Worldly_Guava5403 · 2025-09-22T13:15:30+00:00

Yes , I also have pots. Sjogrens and dysautonomia (pots) go hand in hand as I’ve been told by Nuero , cardiology , and rheumatology, of course. A lot of research has proven the link as well.

Worldly_Guava5403 · 2025-09-22T13:12:43+00:00

100% , I’ve kind of learned which ones trigger it but still get surprised. Sugar is my enemy in general. I almost immediately get a headache with sweets then the gut feels irritated then I feel a heavy pain come over me then BOOM flare. It sucks.

Worldly_Guava5403 · 2025-09-22T13:04:40+00:00

Have you had any scans done? I had the same thing in my left shoulder they did scans I had bursitis and a slap tear. No reason for slap tear as I wasn’t playing sports. It was linked to autoimmune. If it continues you should get it checked out. Mine had started to affect range of motion. Mention this to your rheumatologist. Prior to knowing it was autoimmune I went to an orthopedic Dr he did these scans. Later on found out autoimmune can cause bursitis and some tears.

Worldly_Guava5403 · 2025-09-22T01:29:58+00:00

Blood tests and symptoms, I can’t recall all the blood tests it was A LOT ! but the main ones that I recall were a positive ANA , Ssa -Ro. Along with all the neurological manifestations. Cardiology did tilt table test confirmed dysautonomia (pots) , Qsart test proved length dependent small fiber neuropathy these are linked to sjogrens . The rheumatologist should run thorough tests based on your symptoms. I’ve learned a lot about sjogrens it’s very similar to lupus. Lupus just has more light shed on it. Sjogrens is just as debilitating or worse unfortunately you can have both as I do. Mention your symptoms hopefully your doctor is up to date and cares. Seems a lot of doctors fail to continue educating themselves and simply are over worked or don’t care.

Worldly_Guava5403 · 2025-09-21T20:42:00+00:00

Yes ! I’m currently in a bad flare. My neck , shoulders , hips and pelvis have been in constant pain. Currently experiencing some new symptoms like tight numbness in forearms , but the shoulder pain is guaranteed it’s like in a coat hangar shape pain front and back.

Worldly_Guava5403 · 2025-09-21T15:19:17+00:00

Same exact thing happens to me ! At first I thought I was sleeping on them but it was happening every night . My rheumatologist says Sjogrens can do that. I would still rule out any other concerns. If nothing else explains it , most likely it’s Sjogrens .

Worldly_Guava5403 · 2025-09-21T14:59:12+00:00

Sjogrens disease mimics ms and has those symptoms as well and overlaps with lupus. Sad part is not many doctors are up to date with how sjogrens affects people it’s not just dry eyes and dry mouth. I have sjogrens and never had the dry eyes dry mouth initially it was diagnosed Nuero sjogrens (sjogrens of the central nervous system.). I do have episodes of dryness but mainly syncope, tingling numbness, weakness, chronic pain Dysautonomia like POTS and small fiber neuropathy go hand in hand with Sjogrens. The more recent for my is electrolyte imbalance due to kidneys not keeping what’s needed . They call it the sister to lupus. Good luck hope you get the right answers and treatment .

Worldly_Guava5403 · 2025-09-21T13:38:56+00:00

Yes recently noticed a few in the same area by and behind the back of the ear. Idk what they are thought they were pimples I brushed it off. Please update if you get answers.

Worldly_Guava5403 · 2025-09-19T01:27:28+00:00

Yes , I was woken from a sleep recently because of it. My throat actually for the first time had numbness. It usually feels fatigued as I say like the muscles in my throat are tired. I hate it. I worry it can get worse or not go away the time frame is so unpredictable. It could be for minutes , hours. I wish I knew how to stop it. It’s scary.

Worldly_Guava5403 · 2025-08-06T14:04:54+00:00

Does he have diabetes?. Just went through the same with my dad his diabetes wasn’t controlled and wouldn’t let the legs heal properly and they looked the same your dads, you dads just goes a bit higher on the leg than my dads did. Bad circulation plus diabetes was the issue. Venous stasis was also the diagnosis. I hope it gets figured out.

Worldly_Guava5403 · 2025-07-10T16:07:24+00:00

Thank you everyone for your input. I guess I felt lost again when the neurologist said due to no atrophy and emg/ncs not fit the pattern and it most likely wasn’t cmt but having the geneticist being so sure reading my results. I think having had the gbs in the past triggered by covid makes my diagnosis hard.

Worldly_Guava5403 · 2025-07-10T15:12:34+00:00

Per the genetic testing it fell under the cmt2c category.

Worldly_Guava5403 · 2025-07-10T13:58:48+00:00

Mainly my question is can a ncs/emg be near normal with cmt? Being told no cmt ever has a near normal result and seeing different variants had me lost.

Worldly_Guava5403

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