[DejaVu]

A Warm Hello to All,

My apologies for my absences and late responses.

The recent flare has been a significant challenge. This has been the most severe flare in years.
My PCP, my rheumatologist and an orthopedic specialist have been involved and doing their best to help out, which I appreciate.

The Update:

My recent foot injury is currently ruled a mid-foot sprain and is improving.
Ortho has referred me to PT/AT to see if we can strengthen both feet/ankles.

I am almost done with Lovenox injections, taken for superficial clotting issues in lower leg and foot.

I had sworn off clonidine, yet had to go back to it, as I'd needed it to offset the severe pain. I keep the dose very low, 1/2 of 0.1 mg twice daily.

(I am on opiate meds as well as prednisone and Depakote.)

I met my new neurologists this past week. One of the most frustrating issues with neurology has been the fact that there has not been continuity of care. A resident is assigned and then it's a toss, at each appointment, as to which Attending Neurologist one sees. It's absurd to follow a case without continuity.

I was sweating it out with the new resident, as he is constantly assigned to my case, until he leaves the hospital. He did a very thorough neuro exam; yet, he kept saying he had no experience with CRPS and would not feel comfortable prescribing even topical ketamine, ever. Ever?

He clearly did not realize the extent of my history. He'd commented there was still lots of reading for him to finish. Yes, indeed.
(I cannot bring him up-to-date in a 20 minute appointment and I told him so. I am made to wait for 6 months for an appointment and then told we cannot finish the appointment because not everyone is up-to speed on the case? He was starting to look very frazzled. I then told him it would be a lot easier on him if neurology scheduled more frequent appointments. I'd added the fact that I also need the follow-up care.)

When the Attending Neurologist entered, everything then changed.
He is new to our area.
He looked at my feet and noted the color changes (purple at that point).
He examined my feet and noted the swelling, the weakness, etc.
He examined me head-to-toe. He was very kind, very thorough, very insightful.

He said, " There is this condition, called CRPS. I suspect you have this, in addition to your other issues." (What a relief.) He could see many tests had been done and many had not been done. He is so new to this area, he was not sure of which tests would be available here. He is ordering (or has ordered) as many as he feels are warranted at this time. I do not yet know all of the testing he is ordering, as he was staying late with the resident to go over my chart, in order to list the tests he wants done.

It's complicated, no doubt, as I have multiple conditions co-occurring.

He added an AED named Aptiom to my meds.

So far, I know I am scheduled for a bone scan and another EMG.
He is also testing autonomic functioning.

I had addressed the lack of continuity of care. I gave him examples of the extremes I'd dealt with in different doctors. He cringed and told me he would follow my case himself. (I hope he can do so.)

I am very sedated with meds. Yet, I have much less pain. It's still very painful at times; yet, not as severe as it has been. I cannot function well on this amount of medication. I know it's necessary for now. I hope we can drop some meds, soon. I find the clonidine very depressing. It feels like the Aptiom adds to the sedation and to related blah. Patience....

Thank you for your patience. I still have many PMs awaiting a response. I appreciate your love and concern and will be writing back to you as soon as I can do so.


Much Love to ALL,
DejaVu

[Littlepaw]

Yeah!,

This sounds like a lot of great news. I am so glad you got the new attending.

The diagnosis on your foot is fantastic. Yes, really. A midfoot sprain will heal well and not require some awful surgical intervention.

When you start PT, you might consider asking around and finding someone who does manual therapy. It is a special certification and they move and adjust your bones very gently. My first PT did this, I had heard about it from its use by the Laker's trainer Gary Vitti. I found it to be VERY helpful adjusting mechanical issues in my foot that arose from imbalance after surgery. The foot is so darn complicated. It's like a Jenga puzzle in there. It's nice having someone who knows where everything ought to be and how it ought to move in relation to each part.

Don't fret on the temporary need for enough meds to make you loopy. The important thing is keeping your pain down while you heal!

Sending hugs and healing love,

[DejaVu]

Originally Posted by Littlepaw

Yeah!,

This sounds like a lot of great news. I am so glad you got the new attending.

The diagnosis on your foot is fantastic. Yes, really. A midfoot sprain will heal well and not require some awful surgical intervention.

When you start PT, you might consider asking around and finding someone who does manual therapy. It is a special certification and they move and adjust your bones very gently. My first PT did this, I had heard about it from its use by the Laker's trainer Gary Vitti. I found it to be VERY helpful adjusting mechanical issues in my foot that arose from imbalance after surgery. The foot is so darn complicated. It's like a Jenga puzzle in there. It's nice having someone who knows where everything ought to be and how it ought to move in relation to each part.

Don't fret on the temporary need for enough meds to make you loopy. The important thing is keeping your pain down while you heal!

Sending hugs and healing love,

Thanks, Littlepaw!

I am so very fortunate to have seen this attending. I had no idea who I would see, which is the way they work things. I don't mean to belittle the resident. I found his responses disconcerting. He was very paternal and close-minded... in 2015? I feel a good doctor does not pretend to know answers and keeps an open mind. My last resident was incredibly bright, relaxed, hilarious, and -- was stolen away by Duke. Kudos to him. He clearly has a fantastic future in neurology.

I, too, am so very happy to avoid foot surgery. It's taken time for ortho to feel sure about a sprain vs a break. I am thrilled there isn't a break. I am also thrilled to be rid of the boot!

My feet are in rough shape, I will admit. The neurologist did not show much enthusiasm for PT or strength training in my feet. When I saw him testing my feet, I'd wondered how I was walking at all. He'd wondered the same.

I saw my ortho the next day and told my ortho I refuse to believe we cannot impact my feet for the better, at least until we try. He examined my feet and told me of how sorry he is about my feet. He'd determined the deficits were neurological and he was closing out his involvement in my case. I asked him if he'd stay on in order to prescribe PT/AT for both feet. He was clearly tearful and said he would keep my case going in order to see what could be done. He ordered the PT when nobody else had done so. He will oversee the PT more closely.

Thanks for the tip on "manual therapy." I will look into this.
One of my friends is a Sports Chiropractor and Athletic Trainer. She is also now teaching Sports Medicine at the local medical school PT program. She's an outstanding person, in every way. She is highly skilled and also well-connected. I am sure she will help me to find someone experienced in manual therapy.

Thanks, too, for the encouragement concerning meds and feeling loopy.
I've always had a difficult time sitting in one place for very long. I do relax well. I just get ultra bored after awhile. At times like this, our minds can do a number on us, taking us into despair. I am very appreciative of your recent upbeat thread, by the way.


DejaVu

[bluesfan]

Hi DejaVu

Thanks for the updates. Glad to hear you're still in one piece albeit somewhat compromised in both physical and mental function - happens to the best of us .

Sounds like you might have lucked out with your new consultant - however new he is to the area it seems he's willing to get up to speed on your case and help find the testing you need. Good on you for being able to explain your situation (and previous issues on continuity of care) in the limited 20 mins appt.

Take care and rest up - just keep in touch when you're up to it.

Lotsa hugs

[DejaVu]

Hi Bluesfan,

I appreciate the sentiments expressed in your post.

I had made my point about the lack of time to get new doctors oriented to my case, etc. When a doctor knows a case well, a lot can happen in six months.

The attending had extended my appointment time while I was there.

He has also instructed the intern to schedule me for every 2 months and a 40-60 minute visit. The intern had really needed the attending's okay to make these changes anyway. He'd also clearly told the intern to be sure to return any call I made to his office. The attending was responding to my concerns about a long history about lack of responses from the department in the past.
He could clearly see the lengthy and chronic delays in my chart.

(This particular neurology department has some very reputable doctors/researchers practicing there. The department has never been efficient, and every so often, many doctors leave, seemingly, all at once. Attending doctors are also researchers and work hard to bring research monies to the university medical school/hospital. Many of them report they are not allowed enough time to see their patients. Just recently, and suddenly, there is no MD for people with MS, even though this is an MS center? Possibly the politics of a teaching hospital?)

I am fortunate to have the neuromuscular specialist I now have and I hope he stays. He was trained at an outstanding neuromuscular institute.

I am also fortunate to have this new attending. He has come from an outstanding neurological institute. This is why he'd immediately recognized CRPS signs/symptoms.

I am feeling very fortunate, all things considered.


DejaVu

[DejaVu]

Autumn in my favorite season. I love the colors and the cooler weather. I love spending time outdoors, taking in the beautiful colors, feeling the breeze blowing gently on my skin. Everything was beautiful, and simply perfect!

I was enjoying a fun Autumn, all was looking up... until I'd injured my foot while on a short hike (on a gorgeous, sunny, colorful Fall day).

This has been the flare from hell.

The pain, the meds, getting through the appointments and the tests.
I am not sure of which is worse... the pain or the med side-effects. I have never gotten along well with the AED meds.

I am very lucky in many ways, I know. I am deeply grateful.

Everything in life is temporary, thankfully. This change in status came on fast and unexpectedly. I do trust all things work together for our souls' best interests.

Even so, being human, I am looking forward to the next change, please.

I am so thankful we all have one another for mutual support.



DejaVu

[Littlepaw]

Hi DejaVu,

I am holding you in love today and sending thoughts of healing and restoration. You are strong and amazing. I know you will weather these stormy waters with grace and find calmer days ahead.

Godspeed on the healing. May it come soon!

[mama mac]

DejaVu,

I have not been around much either and just saw your update. I hope this plan of treatment will prove helpful for you. I find it comforting also to rememer that life is always in motion and change is constant. May the next wave be a warm, gentle and comforting one.~mac

[DejaVu]

I had forgotten to mention:

I am having great luck with magnesium chloride spray.
I have found this to be more powerful than the Epsom Lotion, which is magnesium sulfate.

The lotion is less messy.
However, the spray is so much more helpful to me.

I am using Life-Flo Pure Magnesium Oil (Spray).
This is 100% pure.
Approx. 66 mg. elemental magnesium for every 4 sprays or 560 mg. per teaspoon.

I could not sleep through the night, despite all of the meds and topical solutions, until I had started to use this magnesium chloride spray.

I massage my lower legs and feet with this form of magnesium at least twice a day. I make sure the night massage is just before bedtime. This quiets some of the deep burning pain and stops the severe cramping/spasms in feet/toes/calves.

If you have any open lesions or cuts on your skin, this formula may sting, as it is a "brine."

This spray/oil is making sleep possible for me right now. In addition to the pain/spasms relief, this feels very calming overall.

Hope this helps someone.


DejaVu

P.S. Life-Flow offers many different magnesium chloride products, including the spray/oil, lotion, gel, sports formulas, etc.
http://www.life-flo.com/magnesium.html?p=1 -- This link will show you their varied magnesium chloride products and suggested retail prices. However, I have found their products sold at varied prices throughout the internet.

[DejaVu]

Littlepaw, thank you.

Mama mac, thank you.

I have had exacerbations before. I do not recall one as severe as this one.

I think the ongoing testing is further kindling this fire.

Every time I have a blood pressure cuff put on me, every time they use a blood draw tourniquet, every needle stick (for another draw or direct injection for bone scan) -- the pain spreads everywhere and the pain level shoots through the roof. It's so severe, I almost pass out. Lately, students have been doing the draws and injections and they are missing the target. I am usually very agreeable. While I feel it's important students be allowed to learn, I cannot take further needle sticks, not to mention errors and redundant sticks. The tourniquets are even worse.

I had talked to the radiology tech about the direct injection. He saw it as a matter of simply hitting the vein the first time and he was sure he could do so. I had wanted a smaller needle and a topical numbing agent. (His student had just tried and had missed and had pushed the needle all around in an attempt to finally hit the vein ... ouch. This attempt by his student had put him behind schedule and he was most interested in putting everything back on schedule.)


I have this in both lower legs/feet (originally from a sural nerve biopsy). I have this in one arm (originally from a nerve surgery).

All four limbs are in agony at this point, all four are throbbing in extreme pain.

I have had years of a reprieve from trigeminal neuralgia, and it feels like it's coming back, as well.

I have had a lot of tests lately. I also just had a three phase bone scan yesterday. I will have more ultrasound on Monday. The ultrasounds use pressure, so are also extremely painful.

I have more testing scheduled for the first two weeks in December. (Mostly autonomic testing, as far as I know at this point.)

I need a better intervention. The medical procedures are just aggravating the whole picture even further. If/when I can get things to quiet down, I go in for testing and ... wow. I come out much worse off just for attending/allowing the procedures.

I will be calling the neurologist next week. I need some further relief.

Thanks so much for your love and support.


DejaVu