Interesting twist of events: Hi, hope everyone is... - LUPUS UK


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Interesting twist of events

JennaShi profile image
10 Replies

Hi, hope everyone is staying safe and well. We are again in lockdown and California looks to be pretty high on the exposure list. Please keep us in your thoughts and prayers as i can only imagine how tired health care employees must be. A good friend of mine recently tested positive as she was around her family helping as they are adjusting to a newly adopted baby along side two other kids and got the virus from them. Not sure how they got it but my friend has MS and other health issues. Hoping and praying she pulls out ok but worry.

In other news my husband and I traveled to UCLA to get the emg and blood work retested. Neuro said emg was good but I noticed I don’t have good reflex in my ankles and I think elbows? (Can’t remember) not so good with with balance. The interesting part is she thinks I have Ehlers Danlos syndrome and had sent me a paper on it/ said it can be another cause of sfn. Anyone else have this?

Blood work came back and still slightly elevated cardiolipin antibodies although slightly lower than before. So I’ve come to the conclusion that our labs around here are not as sensitive. Will see what she says as I have an appointment with her later this month.

Getting a Tens unit tomorrow and hoping this will help with the neuropathy so I don’t have to rely on medication so much.

Has anyone looked into mitochondrial disease? Or been diagnosed?

I’ve been going through the grieving process as I’ve been desiring answers for a long time and have been told that I may never get them. How have you gotten through the process/ been able to accept and move on? It seems like it comes in waves. Have a nice week!

10 Replies
KayHimm profile image

Hi Jenna -

Hope your friend does okay with Covid. So is the EDS the new diagnosis or an additional one? There are people here with both autoimmune disease and EDS. I am sure they will pop in with suggestions.

What is the Tens unit?

As for the lab interpretation, my view is to leave that up to the doctors. That is actually where the training, judgement and expertise comes in. All labs are taken in context. Example: I had similar neuronal antibody tests to you. One was low positive. You’d think since there was a reason to do the test, that lab would be significant. Both neurologist and rheumatologist waived it off. I could ask why but the true explanation would take so long that I don’t want to be bothered.

Your anti-cardiolopin test could be a mystery. My rheumatologist explained to me you can see high titres that are causing no symptoms (and doctors still don’t know what to do with information) or low titres like we have with lots of symptoms. Rather than trying to interpret the lab yourself, why don’t you ask the doctors specifically for what they think it means and if it could explain any of your symptoms? It is a tricky antibody. It is more than diagnostic.

It is hard to move on when you don’t know what you are moving on from. I think you need better understanding of your situation,

Good luck and hope treatment helps soon.


JennaShi profile image
JennaShi in reply to KayHimm

Thank you Kay, I hope so too. She is in her 70s so it's definitely worrying. I've always known her to be a fighter, so I'm hoping she will pull through this. <3

Yes, EDS is new, however after looking over the paper with the Beighton scale, my symptoms make sense. One example is that my shoulders subluxe naturally and have since I was a child. But I never mentioned this to my doctor, so I'm not sure how she would've guessed. She started asking me about whether I had a flat surface a above my chest and I actually have a slight protrusion. It's not where typical people have it in Marfan's and I assumed it was normal (pectus Carinatim). I would like that and saw that Health Unlocked also has a EDS group and will check it out.

This was taken from the Medical News Today website: A transcutaneous electrical nerve stimulation (TENS) unit is a battery-operated device that some people use to treat pain.

TENS units work by delivering small electrical impulses through electrodes that have adhesive pads to attach them to a person’s skin.

These electrical impulses flood the nervous system, reducing its ability to transmit pain signals to the spinal cord and brain.

The same electrical impulses also stimulate the body to produce natural pain relievers called endorphins.

I've been searching for it in groups on FB and it seams alot of people use it. hopeful it wont be as painful with the SFN. They have a pretty good rating on one in Amazon if you're interested in checking it out.

I'm sorry and that must've been frustrating. I agree that there must've been a reason to test and have had the same outcome with ganglioside antibodies. I can see you're point as to why you didn't push it. Coming from previous doctors that have brushed me off in general, sometimes trust takes time to build. But if you know and trust your doctor, I could totally see it. I guess there's also the perspective that if you don't have symptoms of it yet or that your EMG is so far normal and those antibodies affect the large fiber nerves then perhaps there isn't a current cause for concern.

I agree with your doctor and think it can also be applied to the above paragraph as well. I guess it does get confusing not being an expert on antibodies/ autoimmune response and will try not to get hung up on a more specific diagnosis. There was a pub med article that I found recently that talked about Cardiolipin being less likely cause for a clot so I wonder how many people in this group or others who strictly have cardiolipin and have had clots. So far the clotting test has been negative so this good too. I am curious about the theory my nuero mentioned about cross reactivity with antibodies and what that means for all of these antibodies I've tested positive for over the years. Lately my ANA has been low but has been positive trend in the past. My appointment is on the 14th so I will write these questions down and ask her.

I couldn't agree more. It seems like one thing pops up and later goes back down. It can be hard to let it go if there's alot of uncertainty and not feeling well.

Thank you, I hope so too. I stopped Gaba as my thyroid levels went pretty low. Thats another issue in itself, so I am hoping something helps. Didn't realize how long my message would be, I apologize. I hope you are feeling better these days and that more clarity is brought to your situation also.

KayHimm profile image
KayHimm in reply to JennaShi

No apologies necessary! You are in a hard unclear position. Yes, just ask questions. Your doctors are trying to pain a picture. They will answer as best they can.

I have actually had UCTD for a long, long time. New issues come up. New tests. It is just the nature of autoimmune disease.

Actually, it was good news that the neuronal antibodies were negative. My rheumatologist had already told me a negative result was better. I pulled out of my post Covid slump so didn’t need help with IVIG anyway.

It is hard early on to trust your doctors. But interpreting labs, though interesting, is impossible if you aren’t trained. It is all perspective. We have zero. Asking questions is good, thinking we can diagnose disease doesn’t usually get us far. We all look on the internet for answers. But Dr. Google is apparently a terrible doctor. 😅

Ask your doctor straight out if she is concerned about your anti-cardiolipin antibody. She will give you an answer. It is incredibly complicated. If you had definitely lupus they might recommend aspirin. But in other cases, the recommendation seems to be to do nothing if no clot and titre is low.

Wishing you luck with this.


JennaShi profile image
JennaShi in reply to KayHimm

Thank you Kay, yes hoping that the picture will be more clearly painted.

Are you able to more clarity on what is going on with yourself? Do you know what is causing your autonomic dysfunction and is this why they are checking your antibodies? I think I remember saying you have some good doctors. I hope that your new issues aren't bad and am sorry you had to deal with Covid on top of it all, that had to be rough. You had mentioned that low fevers happen with autonomic dysfunction. I find that so interesting and have wondering the same thing! I'm not sure if you have looked into this guy yourself and think it may be somewhat relevant so I will attach the link if you're interested. Not sure if you have eds, so if you ignore the part about eds, and listen to the stuff on autonomic dysfunction. But it is quite interesting in general. His name is Dr. Alan Pocinki

He has another good one on sleep and psychiatric disorders:

That is true, and usually don't get a good answer by trying to interpret labs ourselves with google. Forget trying to figure out the gene aspect with google haha!

I will do that. I guess I've been afraid that she would dump me if something more didn't show up recently, but fear can be our own screwed up assumption based on past experiences. And if things are low, no symptoms arise, that is a good sign.

Roarah profile image

I have EDS as do my brother, sister and my daughter has just received a diagnosis but we knew unofficially at birth for she was born with hip dysplasia and other tell tale signs. My sister has KEDS, a type that comes with severe scoliosis. I have heart issues linked to mine but not too serious and my daughter, 13 has an appointment with a genetic cardiologist yearly too.

It is actually more common than recorded and many doctors no longer consider it rare even though they now have harder diagnosis criteria they are seeing more diagnosis.

Unless it is vascular Eds it is not too serious but comes with pain. My brother had no heart issues but needed knee and hip replacements before he was fifty from cartilage issues since childhood. I have flexibility but less joint or muscle issues just terrible eye sight, high pallet, carpal tunnel,low BP and structural heart issues and my history of migraines are most likely related.

Since we have known since we were young and since it is hereditary and genetic I just think of it as normal as my eyes being blue is. I was diagnosed in the late 70s. It is all I have known as normal so it does not bother me. I have low blood pressure but have since I was a child. My only regret is I wish I had a TEE instead of just echos of my heart for then my pfo would have been known before having a stroke.

Good luck. My brother loves his TENS.

JennaShi profile image
JennaShi in reply to Roarah

It's nice to meet you and thank you for sharing your story with me. I'm sorry it has become a normal for you and that it had taken so long to diagnose. I am also hearing that it's alot more common that people have originally thought, perhaps this is also because more awareness is being made? I hope you don't mind me asking, and I wont be offended if you choose to not respond, but does this mean that your brother, you and your sister have different eds genes since you have different forms of eds? Also do any of you have small fiber neuropathy or autonomic issues? I have felt the same way about my dislocations and subluxations. I only wish it had been noted in the past as my grandpa and his son, my uncle, had heart issues and all but my aunt has passed away so it's hard to know if they had it or Marfan's syndrome etc. as an underlying cause.

I'm glad he likes his TENS, and thank you, I'm a little nervous as I have alot of pain/ burning etc. due to sfpn, but am so hopeful.

Roarah profile image
Roarah in reply to JennaShi

Thank you. I was actually diagnosed very young. I was under ten years old when my older brother was diagnosed at twelve our pediatrician diagnosed me and my younger sister was diagnosed two years later with KEDS. Because of my brother’s diagnosis our doctor knew to look into it for us too.

We most likely have similar DNA just it effected us differently. My brother was also born with a heart murmur like I was so most likely has a pfo but unless he has a stroke closure is not usually supported.

I have always had very low blood pressure and do sometimes blackout if I raise to quickly. As to neuropathy, in my twenties I was diagnosed with carpal tunnel with irreversible damage and in my 40s I had two massive strokes ( had shingles and I was positive for apls I am not believed to have vascularEDS) so yes I have neuropathy but I handle it with a form of CBT called ACT.

I really hope the TENs helps.

JennaShi profile image
JennaShi in reply to Roarah

I may have misunderstood in a previous message but I’m glad that you were all checked out together at a young age! Wow, it’s interesting to read how you and your brother deal with some similar issues but also different and different from your sister. I have a twin sister and have asked her if she has had any similar issues to mine but she’s one to tough things out and chalk it up to all the sports she used to play. I hope your brother doesn’t experience a stroke and I’m sorry you’ve had to experience two massive strokes, that’s tough! Did you mean to put cbt or cbd? I’ve heard of cbd but not cbt. Will have to look this up, does this affect your low blood pressure at all?

Thank you, it is a bit painful on the legs but I’m realizing low setting and consistency helps!

Roarah profile image
Roarah in reply to JennaShi

By cbt I am referring to a type of psychological therapy called cognitive behavior therapy which is well studied and shown to be fairly effective in helping people deal with pain and also some symptoms of POTS which is commonly seen in EDS patients. Biofeedback can be used to regulate blood pressure in POTS patients.

JennaShi profile image
JennaShi in reply to Roarah

Thank you for explaining these to me Roarah 💜

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