How long without drops until damage occurs to eyes?

[MAT51]

This link might be of interest re GI issues and brain

neurosciencenews.com/immune-cell-gut-brain-5770/

[quietdynamics]

2013 I came across article:Sixth layer to human cornea discovered
Dua's layer between stroma and Descemet's membrane http://optometrytimes.modernmedicine.com/optometrytimes/content/tags/cornea/sixth-layer-human-cornea-discovered

One would have thought the human eye was "a done deal".. technological advances exponentially understanding.

Recently watched a phenomenal documentary on injured soldiers, amputees, head trauma, burn victims and the work done at military hospitals to help them. These discoveries branch out to help the general population. In the USA, the survivors of the Boston Marathon for example.  Advances in the Neurosciences at the forefront.

Here is a study by Jonathan Kipnis, PhD, et al,  Dealing with Danger in the CNS: The Response of the Immune System to Injury
Author manuscript; available in PMC 2016 Jul 1.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4491143/

It is frustrating for those of us with Neuro symptom which affect the brain,CNS, gastro, etc, etc as we add on within our network more specialists, who themselves are limited. Studies are just that 'studies'. Specialists are left to try to tease through the maze of our symptoms often complicated by the combinations of medications we take to achieve a semblance of "quality of life". It is not easy for anyone.

I have mused to DH, "I wonder where my disease really is.. without the 'cover' of medications?" Yes, I know labs monitor.
We agreed I would need a soundproof, dark padded room to contain the misery. We quickly perished the thought ... and counted our blessing. 

Just re-starting MtX and working up to maintenance level.. the other evening my daughter simply opening a door sent vibrating, highly disturbing waves through my brain.. good thing it is not a squeaking door..lol Some gastro symptoms are present, along with mid level headaches/fatigue, mental discognisance.

I believe the holidays are especially taxing for many of us here.
We can't like 'juggle' like we used to once.

[MAT51]

I'm still juggling and determined to grow older disgracefully one way or another! Here's a fairly optimistic link you might enjoy neurosciencenews.com/immune-cell-gut-brain-5770/

[quietdynamics]

I'm still juggling and determined to grow older disgracefully one way or another! Here's a fairly optimistic link you might enjoy neurosciencenews.com/immune-cell-gut-brain-5770/

Thank you Mat.. I saw when you posted this. The study I posted is by one of same researchers' as one you posted.

[MAT51]

Yes I spotted that too! Happy Christmas

[anita]

MAT,

I am immune deficient (as is at least 25% of those with Sjogren's or other AI diseases).  I also injection blood thinners daily due to my APS/Hughes Syndrome.  While taking my Cellcept (after about 3 months), one of my injections (in my abdomen) nicked a blood vessel and kept bleeding.  A deep abdominal wall hematoma formed and grew daily.  I went to local ER twice (first when the size of a lemon and then when even larger).  Both times they sent me away saying to keep injecting my blood thinner, as it's better to bleed than clot (and they didn't want me to have another stroke).  but the hematoma continued to grow and then got infected when it was the size of a grapefruit.  This all happened within a week.  They NEVER should have allowed it to get this big!!!  Anyway, I ended up in the Hopkins ER and almost septic.  They had to do emergency surgery right in the ER...8 inch incision and dig out all the infected, gram positive, tissue.  Another day or two and I would have been dead (from sepsis), they said!!  The infection was growing so fast you could watch it move across the skin within the hour...horrifying.  I spent 3 weeks in the hospital, then 3-4 months in wound care for the open wound (can't close an infected wound).

During all this, I, of course, wasn't allowed to continue the Cellcept...and Dr. Birnbaum was hesitant to restart it even after I healed after experience how severe my immune deficiency was and how fast this infection grew.  So we avoided any immune suppressors after this...to this day.  The IVIG works better anyway for neuro involvement of Sjogren's (well documented for improved SFN).  So we went with that since I was already getting IVIG (lower dose) for my immune deficiency.   We just upped the dose to appropriate levels for Sjogren's neuropathy.

You should see full results within 2-3 months...how long has it been...a month?  Keeping fingers crossed!!

[MAT51]

Oh Gosh Anita that's terrible! But we have even more synchronicity.

I had very similar mini version of your horror story after my gallbladder surgery last year, when a huge abscess formed at the base of the keyhole wound after the surgeon had knicked a blood vessel when administering local anaesthetic into the wound. Like yours it was spreading so fast within three days that he didn't even offer me anaesthetic when he was tryng to clean infected tissue out and I ended up with an open wound in my navel, after another week in hospital on IV antibiotics for sepsis, for about a month. So a baby version of your horror story, mine following on shortly from pneumonia (triggered by getting myself off Cymbalta) and then 2 lots of pancreatitis from Imuran all in space of six months.

You are at least incredibly lucky to be at Hopkins under Dr Birnbaum. Eye teeth and all that! So I'm hoping that i have more luck on Cellcept -already doing better than I was after 3 weeks on Sulfasalazine (anaphylaxis after 3 weeks), Methotrexate (flu at 3 weeks) and Imuran or even Plaquenil.

And as it's Christmas morn here now I'll part with the observation that I've woken with my hands and arms feeling lesss weak and achy than usual. I just got up to let the dogs out and was able to get down the stairs without wincing from pain at every step. Maybe Santa has come after all?!

Merry Christmas to you and all other members here
Mat x
 

[anita]

What a nice Christmas gift...less weakness and pain!

Merry Christmas to you and everyone here as well.  May we all have a blessed day and be free from our symptoms...even if just for a while, to enjoy this day.

[wendyoh]

Anita--you mentioned "SFN", please remind me what is that? I am curious how you were able to get IVIG, was it based  on SJS and is it hard to get? What sort of side effects/effects does it have?

[MAT51]

SFN is small fibre neuropathy - a very painful type of neuropathy that generally starts in feet and then hands and works its way up - often causing a burning and freezing of extremities. It is most closely associated with Sjogrens of all the connective tissue diseases.

IViG is intravenous immunoglobulin - an infusion of a liquid substance made from human plasma. In the UK where I live it is generally only administered for those with demylianating neuropathies affecting the central nervous system, but some hospitals and doctors are more enlightened than others. It is very expensive because it's derived from human blood so is in scarce supply and the SFN has to be confirmed first by skin biopsy -and even when it's confirmed some are still just told that it's due to Fibromyalgia or chronic fatigue and only are offered pain meds such as Amitriptyline or Gabapentin rather than anything that might stop it progressing, such as Cellcept, Rituximab or IViG. My rheumy told me that this is how most with Sjogrens SFN are treated and I'm afraid he's right about this. Anita is quite unusual but she does have a very severe form of SFN and also one of the top Sjogrens doctors in the world!

Hope this answers your questions.   

[wendyoh]

thanks MAT--I don't recall if you are both from UK. I have heard of IVIG here in US, someone I know who got CFS from a bad hepatitis shot in CA (she was a nurse and it was vaccine) was given IVIG in Midwest in late 90s---which is sort of odd because I don't think its given out much, but I don't know much about it.

I will have to explore SFN--in a certain type of flareup I have  I can get burning in my feet.  I just had one this weekend, hopefully its subsiding for now but  I can get burning in feet, spine and teeth and eyes get photophobic--I have wondered if it was bone pain tho. I can still walk when it happens but don't like to walk far with it.

[MAT51]

Sounds like some mild SFN is affecting you too if you get burning in your feet but only when flaring. Mine has died down a lot -it used to wake me crying out in hands feet and right up into the remaining limbs every night - I had to try and cool it down by standing in cool water and dunking my hands too. Now I barely have any apart from in my face and hands - and it's not nearly as painful. It does seem to have left some widespread loss of sensation though which I'm told by my neurologist is permanent. This in turn affects my balance and my face has a lot of numbness and tingle too which gives me vertigo if I turn my head while walking.

Anita is from the US and I live in Scotland.

[wendyoh]

Ah, and it is only Northern Ireland that is part of UK right but Scotland is....I must confess I don't know the ins and outs of that but I am intererested

but anyway, I am sorry for the pain you have had....my rheumatologist once told me he thought I had nerve damage but we didn't discuss from what, that was in regard to my neck pain I have that is related in part to an injury

another forum I have gone to over the years for CFS/ME that discusses issues related to CFS/ME is interesting, there are so many people in UK with bad cases of that and a lot of the time healthcare just wants to offer CBT/GET treatment....but it clearly seems some unidentified virus or illness(es) has struck

Also, I have had occasional bouts of vertigo over the years, it hasn't been a top complaint by any means, although in last couple months it has flared a couple times....had one really unsettling bout of it where couldn't go to work and was throwing up.....I had forgotten how debilitating dizziness and nausea can be, bit of game stopper, wouldn't want that frequently, they did refer me to ENT but I decided not to go. I have cervical spine problems and turning my head certain ways can be hard and I also don't trust that the exercises and exam they would do wouldn't flare me up if they decided I have ear rocks. The bad bout came on a couple days after my doctor did that test where they quick turn your head to see if it worsens the dizziness......I don't like people messing with my head and neck

[MAT51]

You are quite right that Northern Ireland is still part of the UK but Southern Ireland is independent. I don't know that much about it either, never having spent time in either the north or south although I visited both on holiday as a child.

Re Sjogrens small fibre neuropathy - I think about 50% of sufferers have it and there sometimes is assumed to be overlap with this and Fibromyalgia and CFS. My neurologist is German but works in Scotland and firmly believes that rheumatology drugs don't help this neuro aspect of Sjogrens so her patients are only offered the antidepressant or anticonvulsant family's symptomatic treatments. Elsewhere some with Sjogrens neuropathy are offered antirheumatic drugs or even IViG but this would be pretty unusual because in the U.K Sjogrens is mostly treated topically and with pain relief. Other countries have different treatment protocols. Here's a good link about the neuro symptoms of SJS, an article written by Anita's rheumatologist at the John Hopkins. http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/

SFN isn't the same at all as neuropathy that is caused by trapped nerves in our neck or wherever. It is more commonly found in with alcoholism and diabetes.

My dizziness/ vertigo worsens when I turn my neck too and I also have cervical spondylitis (or arthritis in my neck). My neuro says it wouldn't cause this but I'm not that sure. I have neuropathy in my gums and lips and nose too and severe tinnitus - the newest of my symptoms.

[wendyoh]

thanks for the info!
I have tinnitus too, have had it on and off since 2008 I think, but its not bad, medication actually tends to bring it on, I don't easily process chemicals and somehow that can trigger tinnitus, I also had it during the vertigo bout in Nov.