Mel,

I can't quite remember Alan's symptoms right now - I am thinking he has more than pain and burning in three toes, not that that isn't enough!

As others are saying, Morton's can be diagnosed clinically (without other tests, such as imaging) by a skilled practitioner. X-rays are not used to make that diagnosis - but they can turn up other things that would explain such a problem and thus can be used to rule out Morton's.

Ultrasound is usually preferred today. But you should make sure that an experienced operator does the test, using high-resolution. Doing this procedure does require some specialized training, practice, and an appropriate skill set. If there is any doubt about the conditions of the test, then it could be better to have an MRI.

I have found that sometimes the docs go the other way in terms of familial stuff. In my case, for instance, when the family connection was uncovered, there was a tendency to just go with it. I was afraid that the other possibilities that were still on the board might get dropped off.

I am guessing that there may be all kinds of reasons why familial conditions either get pooh-poohed, or jumped on as THE answer.

As usual, your detective work is paying off yet again. It is amazing what we find that we can do when it is important enough. All of your natural and learned skills wouldn't mean much, if you didn't really care so deeply.

rafi

Hi Rafi:


Guess who just called?? The Infusion nurse. And since I thought it would be a WOMAN coming, when a MAN called identifying himself as the visiting nurse, I said "but you're a guy". The guy started laughing so hard. I laughed and said "now how stupid am I, I automatically thought you would be a woman". He said "that's why I'm calling, so I just don't walk up to your house and you won't know who I am". So we chatted and he told me to have Alan take the pre-meds tomorrow morning about 8:30 a.m. and the guy should be here between 9a.m. and 10 a.m.

Now after reading all these posts about the infusion rates, I said to the man, "he's getting 4 hours, right??" and the guy said "nah, maybe about 3" and I responded "absolutely not, I was told by the infusion company that my husband would be getting 30 grams over 4 hours, and that it should be nice and slow". I then said "I was told 4 hours, I WANT 4 HOURS" I then said "I also spoke to the pharmacist who dispenses the meds and HE TOLD ME ALAN WOULD BE GETTING 4 HOURS" We don't want any headaches happening here". So the guy goes "oh, he's getting 30 grams??, oh, 4 hours then" I said "4 hours, nothing less". He said "fine".

I guess I told him hah!!!!! lol

melody

P.S. Now let's get to Alan's symptoms over the past 18 years.
Started with a little tingling between the toes (he thought it was athlete's foot, don't ask me why but that's what he thought it was). When it got really tingling, he went to the doctor and the doctor examined him and said "you have neuropathy". Alan's slight tingling became BURNING, STABBING, PINS AND NEEDLES TO GO NUTS OVER!!! Between certain toes on each foot!! And he can't lie down (well sometimes he can, but mainly if he lies down flat, or sits up, the pins and needles come back). Don't know why this is.

We began a journey of neurologists, rheumatologists, back specialists (because we thought it was the L3, L4, L5 thing going on in his back). All the back guys said: "no, it's not his back". Alan had various emg's, nerve conductions, etc. went to Allergy specialists, this specialist, that specialist. The only guy who really helped him (and this got him off the fentanyl), was Dr. Theirl who is a chiropractic/neurologist. His adjustments saved Alan's life, believe me. He became a new man after going to Dr. Theirl.

Then we went to yet another neurologist, A Dr. Goldfarb, who was the only one who said "let's get you a spinal tap".
The rest is history. They found protein, she says CIDP, so he is getting IVIG.

Fingers crossed on this.

--Alan couldn't be "co-morbid", as it were, and have more than one condition contributing to his symptoms.

The spinal fluid protein definitely suggests an autoimmune component to his symptoms, but with the spinal aspects that you've indicated Alan has, it's also possible that some degree of compression may contribute to his symptoms, and be part of the reason why different positions make his symptoms vary.

There's no guarantee that just because we develop one condition we won't develop another. My initial neuropathic symptoms definitely pointed to primarily a small-fiber syndrome (if only the first group of doctors consulted had realized it)--unless it was a central nervous system syndrome. Fortunately, that aspect was well-tested for and ruled out. But, when I recently had my traumatic neural symptoms in my right hand (resulting from the muscle tear in the right shoulder and the unnatural cervical spine position that produced), if I had not been able to communicate to the physicians exactly what had happened and how the symptoms developed, I might not have gotten the cervical MRI that showed the C5/C6 nerve root pulled into an oesteophytic spur with a moderately reduced foraminal space. Standard doctors might simply have assumed that it was another development in my original neuropathy.

Fortunately, I generally only have to deal with doctors now who know me well enough to recognize my knowledge and take me seriously. That's very important, as the way doctors perceive you and the way you present your symptoms has great influence on how they persue investigations and diagnose--as Dr. Jerome Groopman's book How Doctors Think points out.

Liza Jane is another good example--she's certainly got a peripheral neuropathy, but her more recent pressing problem has been arthritic deterioration and cystic development around her lumbar spine, and the initial symptoms were similar enough to get her and several doctors thinking it might be an extension of her peripheral problem.

The probability of us having multiple, basically unrelated conditions increases as we get older, and it takes a really open-minded physician not to lump everything in with an initial condition. We have to fight not to be seen as just "the diabetic" or "the osteoarthritic" or whatever when symptoms crop up or change in intensity or kind.

You know what I wish for? A machine that we could just slide into and it takes every single picture of our whole body, every muscle, every nerve fiber, EVERTHING!! Then the tech guy goes over the films and goes "AHA!!! here's why you have pain in that part of your body", or he would go AHA, here's why you are numb in your toe".

I mean, possibly in 50 years, some big important computer guy will invent an imaging system that might just make this possible.

I often think that ALL OUR TECHNOLOGY came to be after the incident in ROSWELL, NEW MEXICO in 1947. The computer chip, the technology, cell phones, vcr's..........everything.

I wonder: "if the aliens deign to visit us again, think they might have such an imaging system??" Just imagine, no more spinal taps, blood work, etc.
Boy, we would get answers to certain questions about what the heck is going on in our bodies!!!!!!!!!

That's a long way away, I know!!! But I can dream.....

Actually there are full body scans already in existance....the problem is too many false positives at this time....also unfortunately some conditions it can pick up such as certain cancers, the outcome is no different. Is it better to know...i have to answer that myself on Wed. for a cat scan of the chest...i had one two years ago and it was negative, im not sure i really want to know.

For sticking up for the time frame for Alan - and- if you arent happy with this nurse - if he does try to push the time - or you dont feel he is a "fit" - let the agency know - they should send someone different..... Again, I had nurses try to "sneak" faster times by with me - I could usually tell because I felt worse but I also had the pump that told me the infusion rate and made them correct it - it should say right on the lable of the IV bag the rate your doctor ordered (including step up rate) of the infusion, and the nurse should be making adjustments to the drip wihtout a pump probably evey 15 minutes at first..... then checking vitlals throughout the whole infusion - not just sitting around......

Agreed. That is what I mean. Despite you telling everyone four hours, they still try to push it. Stick to your guns Mel. Been there done that. Don't let them give you the line that if his b/p pulse ok it's ok to increase the rate. It's about all the other side effects that a lot of these nurses cannot get through their craniums.They are to follow a doctors order, not make up their own. Four hours at least, okay, good luck. Smooth sailing to you guys.

Mel -

Morton's in both feet at the same time? While possible, not very likely. I also recall a study of presumed patients with this condition . . . that is, Morton's in both feet at the same feet. Findings : proper investigation revealed that a good percentage of those feet did not have Morton's.

Anyway . . . I have no doubt that you will get to the bottom (oh, oh - sorry about that) of the Morton's situation.

Glenntaj's point about co-morbidity is exactly the point I was making with all that stuff about blaming things on a familial condition. We have seen that happen with the diabetic PN folks here over and over - every symptom gets written off to that one condition. The real percentage of co-morbidity is always shown to be much higher than anyone thinks if a proper study is done.

Oh . . . . about lying down causing Alan's sxs to get much worse . . . this is not at all uncommon - although perhaps not usually as dramatic as in Alan's case. I have found that over the five or so years of my PN that the position I am in has a great deal to do with my comfort - and that the position of maximal comfort is always changing.

During the early years, this position would change over a pretty short period of time . . . now it is changing much more slowly - hopefully a good sign for me. I had a pretty lengthy period of time where lying down was very, very uncomfortable - really made it hard to sleep.

I think a good deal of this effect is nothing more than the pattern of response in the peripheral nerves to stimulation - both external (e.g. lying down creates a lot of input for the receptors, which are located in the layers of the skin) and internal (aggregation of stimuli and then relay to higher CNS centers). As damaged nerves change, whether it be through the "dying back" of axons, dorsal root ganglion, etc . . . . it makes sense that our nervous system will "translate" an experience such as lying down differently over time.

After all, the nervous system does exactly that anyway, that is, try to make some sense of this abnormal clatter from peripheral nerves. If only we could "train" our CNS to interpret this sensory array differently. Speaking of this . . . well, I'd better not get going on about this - - but in short, this is what I am trying to do to help lessen pain. Still working on it . . .

rafi

Hi Everybody:

I just looked at the bag in the fridge. It says 4 hours.

So I'll just hit this guy with one of my muffins if he dares to do it any faster.

I think I made my point over the phone when I said "4 hours, 4 hours, 4 hours" and he said okay!!

So we shall see how he does tomorrow morning.


love ya all!!!

mel

but..I will....

I had Morton's Neuroma's diagnosed in both feet at the same time based on symptoms alone (no imaging) and had surgery to remove them. The podiatrist indicated I had two neuroma's in my right foot and one in the left. Within 6 months...the pain was back and I went into surgery again. He wanted to do surgery on both feet again, but on the morning of surgery, I told him to only do the right and give me yet another cortisone injection in the left. So he stated he removed two more nueroma's in the right.

Now what are the chances that I would have neuroma's in both feet, not once, but twice? I really think this was the beginning of my PN and had those surgeries unnecessarily. Surgeries which have permanently damaged my feet. My PN truly began in earnest within 3 weeks after my last surgery with fasiculations and whole foot burning.

I like to think of the Neuroma dx as the "canary" singing like the canaries they used to use in the coal mines.

Ann