I have a few questions. Things have taken a nosedive around here. I think I mentioned a stress fracture in my left ankle. They put me in a boot. Then while walking in the boot, I developed a stress fracture in my right foot. Yes, that's right,..both feet.

Then I started having some increased back pain and more neuropathy type symptoms extending up and slightly past my shoulder blade area. I figured it was the crutches, hobbling, picking up fat puppies, etc. This means the neuropathy is now including my body from the waist up most of the way. Already have it in feet, hands, legs and lower body. It feels like I have a huge blood pressure cuff squeezing me until it is painful along with all the burning vibrating stuff. Now it has started squeezing me thru the ribcage area. It was just legs.

Today I saw my neuro. She did the usual little hammer reflex things, had me walk, etc. Then she suddenly said, I'm going accross the hall and arrange for you to have an MRI today. They worked me in an hour later. She's worried about my back. She said the reflexes were too good. Rather hyperactive. Not good she says. I don't understand this. I thought we wanted hyperactive reflexes. So we would catch things, step on brakes, dodge puppies etc. Can anyone help me understand what is wrong with reflexes being hyperactive?

I won't have test results til Monday.
Billye

My friend and I have both had this, although not such a wide area of involvement. I was under the impression that this had to do with the connective tissue disease. I was wondering though, if the hyperactive nerves could be causing your muscles to contract...

Please keep us posted.
Cathie

most important are:

1- OUTCH GULL DURN IT! and some other choice 'unprintables', and

2- You aren't in a 'body cast', are you?

I am beginning to believe that since these meds have only been used in the last 15+ years to any extent, they are only NOW beginning to know the price we all unwittingly pay in the long run. You and I, along with many others are ultimate victims of our 'cures', or if not that, our 'therapies'.

I don't know about you, but I suspect it's also your situation, that whatever you really SHOULD do, such as weight exercises and walking, etc. is exactly what we CAN'T do! It's a frustrating cycle! AND a scary one.

Know what keeps me going? Then that doc takes that little knocker thingie and boinks me everywhere and NOTHING happens! Not in my head, thank you very much! Before I'd acquired all this 'stuff' I'd warn them to 'watch out' as I'd had VERY GOOD reflexes until...

That bed rest stuff is harder, than they [docs] think! I'd love to 'observe' THEM trying to 'keep still' in a real life world! HUMPF!!

Super hugs and soft fuzzies for now? - j

Hi, for what it is worth my neurologist has order an MRI for me and he said that i had "brisk" ie hyperactive reflexes and this was one of the reasons he wants an an MRI. As well as the neuropathy in my feet I have had pins and needles/creepy crawly feelings in both legs and bladder problems (I have posted about this before) I have an almost constant and a vibrating feeling in my sit down area which at one point extended up into my tummy. The brisk reflexes were one, but not the only reason, he wants an MRI as this could indicate central nervous system issues, in my case he thinks I may have something called transverse myelitits (LoL).

--hyperreflexia is not as common in neuropathic conditions as hyporeflexia, but it still isn't something to ignore; as was indicated, the most likely explanation is some sort of dysfunction of the spinal cord that causes the muscles to contract too briskly. Rose has talked about hyperreflexia being common in the spinal cord degeneration that is involved in advancing B12 deficiency. Spinal MS can definitely cause it, too.

There are also syndromes that have primarily peripheral effects that have secondary central effects that can cause this, such as Niacin deficiency.

I haven't seen this mentioned with Sjogren's, except in the rare cases where CNS involvement might cause transverse myelitis (and I've only seen the Washington University research website mention that).

It's possible, though, that this is related to arthritic impingment in the spine. The most common casue that I know of, though, after actual spinal injury, is medication side effect--and this is quite common. Time to look at all your meds and the possibility of interactive effects (and I'm glad you'e getting the MRI).

But now I have even more to think about. My husband and I talked about it and he and I both get the feeling that she is thinking that due to my arthritic bone condition, the spine may have a cracked, crumbled whatever issue that could be affecting something.

I have been seeing an ortho for the fractured ankle and foot and he believes it's the methotrexate causing the bones to fracture. And I've done reseach that leads me to that. My methotrexate has been dropped 10 mg. by my request.

The neuro said she is starting with the MRI and if that shows nothing she will go from there but she admitted to me that she is "hunting".

Lupin,
Transverse mylitis seems to be common in Sjogrens. But then so is small fiber sensory neuropathy.

We will see I guess.
Billye

I don't know if this will help or not, but my old doc told me that I needed something to calm the nerves down. I loaded up on Magnesium, that tea that I can't remember the name of, "Sleepytime" maybe? and Klonopin. I know you don't like taking the later, but are you on anything like that?

Has anyone checked your C-Reactive protein since all of this started? What about Electrolytes?

Cathie

Cathie,
Thanks for all the suggestions. I do take magnesium. Have for ages. Klonopin I won't take. It took too long to detox from it and was nasty.

I haven't had any bloodwork done since this started, but I am to pick up a lab request on Monday to check sed levels, kidneys, etc. all the usual arthritic stuff. And I'll see the rheumie in about a week. He'll have all the reports then.

Electrolytes should be good. I drink Pedialyte with my Miralax.

I'll know more this week I hope.

Billye

The neuro called today and the back is fractured. I'm not a happy camper. She has put even more restrictions on me than I already have. It seems there is a stress fracture at T-9 and it is about three weeks old. You know with neuropathy and a progressive disease like Sjogren's I knew I had extra pain but I kept feeling as if I was just having a bad day with the Sjogrens and neuropathy. It took about two weeks before I knew there was a pattern and there were things I couldn't do without increasing the pain, like picking up one of the dogs and holding them at waist level. It was only then that I decided to tell someone and just happened to have a neuro appt. a few days later.

She is calling the rheumatologist and I'm not sure where we go from here. Obviously we have to make some changes. My bones are crumbling. I suspect it is the methotrexate. I have a real fear that stopping the methotrexate will make my neuropathy get worse. It was stable before all of this started.

Well, all I'm doing is grumbling. Thanks all of you for listening.
Billye

IVIG for you? With the arthritis etc, the methotrex and all that is a literal killer...Since I'd been border osteos [on the line between the two] IVIG or plasmapherisis seemed the safest way to go, w/the IVIG being the less invasive and taxing of the two.

I know where you're at about the breaking of bones...the meds I'm on now just defeat all the attempts to put calcium into me...Last week I probably fractured something in my foot stepping on a sidewalk crack wrong... didn't bother going to a doc cause there's not much more than 'wrapping' can be done...I KNOW how to wrap by now...

It's all about trade-offs I think. I'm seeing the Endo soon w/a follow up about my bone-loss, the thyroid thing appears to play a role in all this..Don't know about you, but that brings my docs' list up to [I almost hate to say this]twelve. I suspect your list is up there too!

Nuff said other than 'WHO's ON FIRST?'

Whatever happens don't fall? PLEASE! Super good thoughts and a few hugs to go with them! - j