Question Regarding Drop Foot

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Question Regarding Drop Foot

Postby Isaac » Tue Jan 26, 2016 6:36 am

Hey everyone,

Firstly I would like to note that I have only just signed up here as I am currently in the process of perusing the (somewhat scary) possibility that I have MS and I have a few questions I would like answers to, as I do not get to see my neurologist for a good while (going away on a small trip plus a stupidly long waiting list).

After so many years of being sick, I understand the technical side of drop foot and what it is and the cause, but I had some questions.
FD is often one of the first MS signs shown, and I have had an ever degrading walking gait for some time now - at first this was partly due to pain but mainly because of muscle weakness. I am wanting to know if FD comes on over time, and worsens - if it is insidious, I suppose would be the word...or is it the sort of thing that you wake up one morning and just see. In my current state, my right leg is extremely weak (I have muscular weakness in various areas) and I have monitored my walking pattern for several months and I know that I swing my leg or raise my thigh higher almost instinctively rather than walking normally because my toes will drag (and it can hurt like F*uck if you do that on pavement!) or I won't feel comfortable putting all my weight straight down on my leg/foot in fear of losing balance or pain. When I try to raise the end of my right foot or toes, it is a very odd thing - I am sort of...asking my foot to do it, but often it just wont happen, it will feel as if some force is preventing me from doing it or like I REALLY want to, but it simply isn't happening. There are some times when I can flex my ankle or toes (to some extent, not at all as much as I can my left foot/toes) and this was the thing that made me question if it possibly was DF.

If I am to assume, until proven otherwise, that MS is the hidden cause for the problems I have been dealing with for years (and all have been worsening) my logic says that I am sort of just coming into the beginning of my DF, it is not there (or hugely noticeable) 100% of the time and the damage is not hugely extensive to the nerves/muscles responsible as of yet. It is fact that my walking (right leg specifically) is getting worse, and I now always swing my leg out and that I have 0 ability to balance or support myself if, for example, climbing stairs - I often find my foot gives me grief when trying to do that as well, or when I walk on sand my toes will drag through the sand and that makes it very difficult to traverse the beach!

For some background info, I have recently turned 19 and have been dealing with a slow degeneration of symptoms for close to 5-7 years that all tick the MS boxes.
Clinics, hospitals, specialists officers have been my life most of the past 8 years, and I deal with pain that is not really possible to describe - I have resorted to taking things like ketamine, morphine, tapentadol and other class 8's to take the edge off. However of late pain has become less of a priority because it is manageable, where as problems urinating and falling due to balance issues or memory and speech problems (like 'losing' words) are not.

So to sum up going off the premise stated above, is it possible that if I am just now taking my descent into the nerve and muscle damage that cause DF, is it possible that whilst I experience it 85% of the time, there can be occasions where it is not so sever or hindering?
It is very difficult to asses your gait pattern because walking, and the way we walk, is not something we actively think about!

Thank you in advance for any help you offer, and for taking the time to lend me some of your expertise! :smile:
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The good things don’t always soften the bad things, but vice versa, the bad things
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Re: Question Regarding Drop Foot

Postby 1eye » Tue Jan 26, 2016 8:29 am

Isaac wrote: I am wanting to know if FD comes on over time, and worsens - if it is insidious, I suppose would be the word...or is it the sort of thing that you wake up one morning and just see. In my current state, my right leg is extremely weak

If I am to assume, until proven otherwise, that MS is the hidden cause for the problems I have been dealing with for years (and all have been worsening) my logic says that I am sort of just coming into the beginning of my DF, it is not there (or hugely noticeable) 100% of the time and the damage is not hugely extensive to the nerves/muscles responsible as of yet. It is fact that my walking (right leg specifically) is getting worse, and I now always swing my leg out and that I have 0 ability to balance or support myself if, for example, climbing stairs - I often find my foot gives me grief when trying to do that as well, or when I walk on sand my toes will drag through the sand and that makes it very difficult to traverse the beach!

...

So to sum up going off the premise stated above, is it possible that if I am just now taking my descent into the nerve and muscle damage that cause DF,


You will find many threads here on this. This reply is from my own experience. It's all hindsight, but someone else's hindsight might help with your foresight.

I started to have a bad gait that was worse when I was tired or hot or both.

I knew from having been in rehab that my foot was starting to need an orthosis/AFO. I have to say that I think if I had a do-over I would say no no never, and try to do without it as long as possible. You become dependent on it, and use it more and more when you don't have to. Then you do have to use it. They sold me one for each foot. I wear one on my left, but I never wore the right one, and I never will.

Rehab are only concerned because they don't want a fall. I suppose they have seen many bad ones, and I have certainly had many. I am waiting for surgery on a broken collar bone.

But what I would do is try to re-build, and re-learn. That is very very hard, but we know it can be done because brains are plastic and re-route bad connections. It seems unnecessary when we can still walk, but the longer you wait, the more impossible it gets.

Exercise. Legs, once they work, are not given much thought. Don't be satisfied with what you can do now. Do more. Work it like a figure-skater or Olympic runner. That is the only way for us to stay above our disease. I have a recumbent tricycle and it has given me a lot of exercise, but a recumbent uses different muscles because you can't use your weight to pump. Right now I have started to be able to lift my lower leg when lying down, and I want to do this more and more until I can approximate what my other leg can do.

It gets harder and harder to repeat doing what you can barely do at all. The tendency is to give up, but don't. Do it again and again until you can't. Rest, and then try to do it again. Don't give up. Having our legs does not seem important until we don't.

I would say seek out and do as many exercises as you can. It's your job. It gets harder but not as hard as it will if you don't do them.

To keep your foot from dropping, you have to lift it. The movement you have now, that you stand to lose, is called dorsiflection. It includes your toes. My drop-foot started with not being able to move my toes. That seemed to happen overnight. Paralysis. But now I think if I had done a lot of dorsiflecting, as much as I could manage, when not too tired, and not worn the AFO so much, I might have got that back. Re-routing connections in your brain is hard. You don't know where to start. A good physiotherapist might be able to help you. But keep in mind many of these are in business to sell wheelchairs. They have a big motivation to keep you "safe", which implies selling you something, because they have given up, even if you haven't. You can't as easily fall off a wheelchair.

I hope to be able to climb stairs the normal way again someday. Balance is a big issue, and I'm beginning to think I will not lose my balance if I stand for 10 or so seconds before I try to do anything else. This leads me to believe I not only have a blood drainage issue, but inflow as well, after I stand up. Endothelium in my brain is messed up, and my heart and neck as well. Don't let anyone try to give you novantrone or mitoxantrone. You may have a heart attack delayed by up to five years. It is cardiotoxic, and will damage your heart, even after one dose.

Be safe, and exercise like mad.

I ain't no doctor.
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Re: Question Regarding Drop Foot

Postby David1949 » Tue Jan 26, 2016 8:39 am

MS could be the cause of those problems. But before you jump to the conclusion that it is MS you should get a medical diagnosis. Have you had an MRI of the brain or spinal column yet? Have you had a spinal tap? If you really have MS it should show up on those tests.

There are several types of MS. The most common is Relapsing Remitting (RRMS). That type is characterized by relapses when the symptoms become much worse, followed by remissions when the patient's condition improves considerably. The duration of the relapses and remissions varies from patient to patient, maybe days, weeks or months.
About 10 - 15% of MS patients have the primary progressive type (PPMS). In that case the patient does not have relapses or remissions, but experiences a steady progression of disability. There is also secondary progressive (SPMS) which starts off as relapsing remitting but eventually transitions to a progressive form. There are a few other odd-ball types as well.

There are no cures for MS, regardless of type. There are some drugs that will reduce the number of relapses a relapsing remitting patient might have. There are no drugs approved by the FDA for treating PPMS.

The best solution I've found for drop foot is an orthotic foot brace. These help to hold the foot up so your toes don't drag. The best ones are custom made and expensive, maybe $1000. But there are others that are effective and much cheaper. The Dorsi-Strap is one example, http://www.amazon.com/DORSI-STRAP-Heavy-duty-Comfortable-comfortable-year-round/dp/B0043RIHB0/ref=sr_1_2?ie=UTF8&qid=1453825747&sr=8-2&keywords=dorsi+strap You can search the web for other types.
The foot braces can help regardless of MS type or even if you don't have MS.

Hope that helps.
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Re: Question Regarding Drop Foot

Postby 1eye » Tue Jan 26, 2016 10:32 am

In the near past I have changed from a rigid AFO to one which allows and assists with dosiflection. It has elastic supports on either side of my ankle. They can be replaced. There is otherwise no connection between the foot part and the leg part. I have also seen a similar one which used metal springs instead of the elastic part... I bought one that was all metal, and cost a pretty penny, but the springs were too strong, and it never worked right. Also it ended too late, at the front, so I ended up having the edge of the plastic under the ball of my foot.

All AFOs I've ever had were custom, with the maker starting by making a plaster cast of your foot and lower leg. One of my AFOs no longer fits, because my leg has atrophied and has a lot less muscle mass. So the plastic which was made from the plaster cast is now too big. At least it shows how big my leg used to be.
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Re: Question Regarding Drop Foot

Postby Isaac » Tue Jan 26, 2016 1:46 pm

About two or three years ago I had a set of MRI's, and at the time there was nothing of significance - but at the same time my only real problems were pain and some memory troubles (though the pain was very severe). However, a year or so before my 19th birthday I begun developing problems that were not explained by a pain disease. Balance issues, muscle weakness and wasting, problems with my urination, tremors, numbness/muscle tingling. I also have extreme hypersensitivity - which makes even a blood test unimaginably painful, which complicates matters.

However, we have gone through many types of diagnosis and nothing has ever stayed solid more than a few months apart from MS - despite not seeing a brain or spine lesion last time I was scanned. From what I gather, the first thing that will probably happen is a re-scan - possibly during a flare up, and if that fails and I am still showing the symptoms so clearly, a lumbar puncture (though that in itself may cause some issues with my pain disorder, traumatic experiences increase chronic pain sometimes indefinitely - but I can be put under for the LP if needed.)
The other possibility I have had discussed is a silent lesion, that isn't showing up on the scan due to the part of the brain it is in, or some other reason I don't know much about. There is an average of about 10% of patients who won't have definitive lesions apparently, but will have to wait and see what my neurologist has to say - just a very long waiting list.

I was simply curious about other peoples experiences with their first encounters with drop foot - and if it was a slow progression of getting worse, or a sudden 'wake up and there it is' kind of thing.
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Re: Question Regarding Drop Foot

Postby David1949 » Tue Jan 26, 2016 2:54 pm

In answer to the first part of your question, drop foot came on gradually in my case. I was dxed with MS 20 years ago, but the symptoms were very mild at the time, just some numbness in my left thumb and forefinger. A few years after that my walking started to become a little clunky. There was nothing specific I could identify, but my balance was not quite normal and my walk was a bit awkward.
After about 10 years the left foot would sometimes drop unexpectedly and trip me. Gradually that became more frequent until today the left foot just points downward constantly. I cannot raise the left foot from the ankle. Moreover the entire left leg doesn't want to pick up. The lower leg will not bend up from the knee and the upper leg will not lift up from the hip either. It sometimes feels like my foot is nailed to the floor or like I have a ball and chain on my ankle.

Fortunately my right leg is mostly normal. So I'm able to drag myself around to some extent. At present I can walk maybe 1/4 mile with my foot brace and my cane.

Just for the record I'm 67 years old and I have the PPMS form of MS. I have never had a relapse or a remission and I've never been hospitalized because of MS. I should also add that I don't have pain from MS... thank god. But In the past two years muscle spasms have become a problem. They keep me awake for hours at night sometimes. There are some minor bladder problems and E.D. which are both common in men by age. There are no other symptoms
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Re: Question Regarding Drop Foot

Postby Scott1 » Wed Jan 27, 2016 3:36 am

Hi,

Based on what you described I will agree you have a neurological problem but I pull up short of labeling it as MS. It doesn't impress me that you have to wait so long. You're 19 but you seem to be doing this on your own. If it has been so many years then are you asking the same group of people over and over? I think you may need to get a different circle of medical advisors and that may need the help older people who may be better resourced than you have had the chance to become. Is that a realistic way for you to approach it?

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Re: Question Regarding Drop Foot

Postby Isaac » Wed Jan 27, 2016 6:27 am

Hey Scott,

The reason it has only now been given the attention it deserves is because simply, no one believed me.
A child saying he has pain, he has muscle weakness, visual issues etc is hard to believe - despite the fact that as a child I was very medically minded due to having to look after myself.
I have specialists at the moment, but they are not neurologists and the reason I have yet to address the possibility of MS properly, is because everyone has been looking in other areas. Not to mention the cost of the 15-17 drugs I need monthly and the many appointments, it draws the process out a bit.

As I stated pain and extreme hypersensitive were the only things that hindered me to a great extent in my younger years (though there were other problems, but they were minor and I didn't notice them compered to the pain I was dealing with), neither of which pointed to a neurological problem at the time.
But these past 2 years the pain took a backseat, and things like muscle atrophy, weakness, heat sensitivity (Causing all sorts of problems, like I found it harder to walk properly in the heat, or direct heat causing pain), problems with my bladder, memory problems and a hard to explaining tingling feeling all took over and now it feels like I am falling over the edge of a cliff because it is all happening so fast. I have had for many years a very uncomfortable, unsettling feeling in my gut - like a knot - that we were not looking in the right places, and that we should be looking for MS - but no one ever listens to a child and it gets passed off as being dramatic or hypochondriac. Now, however, it is clear to anyone who watches me day to day I am slowly losing ground - and the onset of drop foot was the first sign that answers to my problem would not be found through a pain specialists or spinal implants (a surgery they have been hounding me to have saying it will make it all better).

And thus here I am, I am asking questions here because it is somewhat of a comforting feeling to hear other peoples experiences, how things happened for them and so forth.
The waiting list for a neurologist in Perth is very, very long and also very expensive - it will happen, but until then I must do what I have been doing for over half my life, and that is researching, educating myself and doing what I can do come up with my own answers or stop measures until the professionals arrive.
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Re: Question Regarding Drop Foot

Postby 1eye » Wed Jan 27, 2016 12:23 pm

From anything I know you have MS. Especially telling is the heat sensitivity. Baths can become dangerous. I am not a doctor. I had a very long time (years) getting diagnosed but thanksbetoPresidentFred I did avoid the spinal taps. I ran out of steam in one vein on account of all the blood tests. Do not be too afraid of MRI. They might not need to use gadolinium. It carries with it its own problems but a lot of us with MS have had it, out of necessity. I was diagnosed by the MRI radiologist.

You should be able to get a closer view. If you can't get a more immediate neurology appointment, for instance, you could ask your GP to refer you to a radiologist. They can use MRI, maybe with gadolinium. An interventional radiologist like Dr. Sclafani of Brooklyn, New York, might even want to do a CCSVI procedure on you (he uses intravascular ultrasound -- uses an ultrasound probe to see your veins from the inside). But he costs $$.
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Re: Question Regarding Drop Foot

Postby DrGeoff » Thu Jan 28, 2016 4:42 am

Hi Isaac,
Drop foot can be an early sign of MS, or it can develop after the diagnosis.
In simple terms, as the heel on the affected foot leaves the ground, the ball of that foot (and hence the toes) do not. tHey drag, they catch, and you need some way to keep your balance.
OK, so you swing your foot/leg out to the side in a arc to avoid the drag, and you get by - for a time. Maybe you are going up onto the toes on the non-affected foot to avoid the drag - and this only helps for a while.
What you need to get checked first is that both your legs are the same length. A good physiotherapist can do this in less than 10 minutes with a tape measure, going from protuberances on hips,knees, and ankles, and it may well be that the lower leg on the affected side is actually longer than on the other.
Mine was identified by a physio, then confirmed by an Othotist, who stuck a wedge of the right thickness under the insole I was using. This made a huge difference to my gait and she then set me up with an orthotic insole with a built-up heel.
I am lucky in that I have left dropped foot and a short right leg, so it does not interfere with me driving.
The cure for my dropped foot was a Functional Electronic Stimulator (FES) which uses electrodes on my calf, a pressure switch under my heel and a box of electrnics on my belt (plus the wiring). The heel comes up, the switch closes the right muscle gets zapped and the foot come up and out so that it does not drag. I don't know what the rules are about funding in Perth (WA, right?), but a grateful state pays for mine. Something else for you to research, huh.
I have found that physios are usually good at spotting gait problems, and a lot cheaper than a private consultation with a neuro.

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Re: Question Regarding Drop Foot

Postby 1eye » Thu Jan 28, 2016 11:43 am

Note that dorsiflection requires use of a muscle that you can't get at as easily as you can with the FES. What it does is called eversion. This is another one you can't do, because of the foot drop. However, enough of your foot is activated in the to-the-side movement these devices produce, that you may get your foot out of the way at the right time, and it can closely approximate what you want it to do.

The eversion movement also includes lifting your toes. I was surprised when this first happened, as I had not seen my toes move in years. It proves the peripheral nerves work fine. Just the brain and spine can't use them anymore. There are 3 such devices on the market, at least.
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Re: Question Regarding Drop Foot

Postby NHE » Thu Jan 28, 2016 11:52 pm

See the following discussion topic for exercises to help with foot drop.

exercise-and-physical-therapy-f21/topic16860.html
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Re: Question Regarding Drop Foot

Postby Scott1 » Fri Jan 29, 2016 2:44 am

Hi,

You are very articulate and I congratulate you for presenting yourself so clearly. Can you go into a bit of detail about the pain? It's such a general word. The very first question hospitals ask is "are you in pain?". If you say yes then they whack you full of something and it becomes harder to determine how you actually feel.
Understanding the discomfort is the first step to overcoming it. Masking it can make solving the problem a little harder. Sometimes, though, there may be no choice.

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Re: Question Regarding Drop Foot

Postby Isaac » Sun Jan 31, 2016 8:02 am

Scott1 wrote:Hi,

You are very articulate and I congratulate you for presenting yourself so clearly. Can you go into a bit of detail about the pain? It's such a general word. The very first question hospitals ask is "are you in pain?". If you say yes then they whack you full of something and it becomes harder to determine how you actually feel.
Understanding the discomfort is the first step to overcoming it. Masking it can make solving the problem a little harder. Sometimes, though, there may be no choice.

Regards,


Hey there,

I did not go into depth about the pain not through lack of understanding but simply because it is quite a lengthy topic to discuss, and was not on-point with my main question. Thank you for the praise by the way, when your body shuts down you only really have your mind - the one thing I keep in good check!

Pain was the first sign that something was wrong with me, and started way back in year 7 and 8. It was, at first, hypersensitivity - that is things that would not normally cause a painful bodily reaction would, for example someone rubbing their hand against your arm, or the rain hitting your skin. Unfortunately, I was young at the time and when I presented my first symptoms to my parents they were dismissive and didn't really believe it. Eventually, after a few years and as I got older, they agreed to have me taken to the doctor and he could tell there was no way I was faking such pain. From there, it became a degenerative problem. It got worse and worse, spreading through my entire body and simply being there 24/7. To manage this, I saw a pain specialist who I still see to this day, and I take things like morphine, ketamine, tapentadol, oxy and others daily to fight back the pain. Specifically, the pain is a very sharp ache, or at times it can be like laying on a bed of nails or as if someone has lodged a screwdriver into your muscle and left it there. I have been sick for almost 9 years now - half my life - so when asked how bad pain is, that can be tricky to answer because my 5 or 6 would probably be the average persons 7 or 8 as my tolerance and ability to handle it has progressed extensively.

Coming forward in my timeline, I developed other symptoms such as muscle weakness, my vision would act as if it had a mind of its own - one day I would need glasses, the other I could see fine, sometimes it would change out of no where and there would be a dull ache sometimes when I looked around, or I would get tunnel vision out of the blue. Then the memory problems began and by this time I was already developing a gait abnormality. The iconic 'leg swing' that is so often used when someone has foot drop was something I was already using because I couldn't put all my weight onto my right leg due to weakness and pain. Thus, as I stepped I would swing my right leg and quickly shift my weight back over to my left. It was when I turned about 17/18 that I noticed the first signs of foot drop, and from there I have been watching it and now I see it the majority of the time when I am walking - if I try to flex my right toes, they simply do not, I can get a small twitch out of them sometimes but it just doesn't 'happen' which is a very odd sensation I must say.

As mentioned heat is a huge issue for me, not only do I struggle to walk and perform generally in it, but if I stand for more than a few moments in direct sunlight, or in the heat, my body develops bright red spots that look like chicken pox that cover me head to toe and they hurt. Now when I talk about my normal pain, the worst I have ever experianced would of been what I call an 8.5, and I went to hospital because of that.
The first time I experienced this...heat reaction, the pain that followed the redness was not something I even have words t describe. It was a 300 out of 10, and thus I cannot be in the sun for too long or in the heat. If I were ever forced to stand in the sun for more than 3min, I would beg for a quick death on the spot.

To give you a run down of my symptoms (that I have verified are NOT caused due to drug side effects):
- Muscle weakness, mainly in my legs but also in my arms. I may very well have muscle atrophy in my right leg.
- Memory loss.
- Problems with finding words sometimes.
- Dizziness and lightheartedness randomly, or when I stand up.
- Absolutely no balance capabilities whatsoever, today I have fallen over twice already and if asked to walk one foot in front of the other I simply cannot.
- The first stages of foot drop, as discussed.
- Problems fully emptying my bladder - after voiding I will feel that I have finished, I will zip up and as I am walking away I will then realizse I had not finished and...well, wet myself. Luckily I have learnt some...private techniques.... that I would rather not talk about to help manage it, but I can see that it has become worse - going from the occasional drip to actually voiding after I am finished.
- Severe pain in my legs (very strong aching or sharp knife like pain).
- EXTREME hypersensitivity - the clothes on my skin hurt like a bitch sometimes, or just shaking a hand can hurt.
- Sexual problems. I am unsure if this is the place to openly talk about that, I personally - being a Buddhist - do not have an issue discussing topics so personal as I am not embarrassed but I am unsure if others are comfortable reading about my sexual life and troubles, let me know in your reply and I can elaborate.
- Postural Tremors (tremors whilst a limb is being supported against gravity).
- Resting Tremors (tremors whilst the body isn't active).
- Severe depression and anxiety, though that could be due to spending half my life in pain and on horrible drugs.
- Fatigue - this has to be one of the hardest things in the world, I sleep maybe 9 hours a week and no matter how much rest I get I am never satisfied, I live in perpetual fatigue and have almost no energy - I run on will power.
- Random numbness in my leg or arm, with a strange tingling on occasion or like pins and needles.

These things have been around a while, developing as I grew. It was never a problem because they were small and out of the way, in a sense. But as I draw nearer to 20 years of age, they are becoming life-impairing.

There will be times when things suddenly get better (not the pain or weakness and walking issues, that never stops) and maybe stay like that for a few days, a week...and then I will come crashing down and I will feel like...I was in a truck that got hit by a train that then got landed on by a crashing plane that was then impacted by a meteor.

Lastly,
I had an MRI of my brain and spine without contrast about two years ago (17 years of age), and this was BEFORE the issues listed above became so noticeable that they impaired my quality of life. At the time I was just in pain, and had some muscle weakness. But, it was decided at the time that my doctors wanted to look into something like 'CRPS' (which I understand is a real thing, but I do not have it and present nothing like a CRPS patient or someone with Fibromyalgia) or Lyme disease etc, and when they stamped that damn CRPS possibility into my file, there was not a neurologist that was very keen to take me on.
Luckily, I have found one thanks to my uncle who has MS who he sees, and this man is a stout researcher and enjoys a challenge (which is the very definition of my medical life). He does not have a waiting list, and instead demands to have every square inch of medical history and goes over it all, along with a written explanation and referral from my GP about my symptoms before he decides to take me on or not.

I have lived within the medical world long enough to learn a thing or two, and when no one will believe you that you are sick or that you are hurting and suffering, you have to do it yourself. So in case anyone assumed that I had simply googled my symptoms, or found MS on some web-based medical search engine, then no. I understand my body, what is going on, and I also understand the drugs I take and how they work - I also understand MS, I have watched a family member slowly decay with it my entire life and in the absence of a neurologist, I have taken to medical literature to learn what I can. However, I do not self diagnose, I simply speculate with logic. We have ruled out most things that it could be, and MS is the only thing that has provided a solid DX for all of my problems over the years.
I understand that when I last had my brain/spinal scan 2 or 3 years ago, I did not have a lesion(s) - but that does not mean you do not have MS, as lesions are not the cause of the disease they are a byproduct. Lesions can develop later on, and I am - assuming I am correct in this - in my early days yet, so they could very well develop later - and there are even cases when people do not have visible lesions.
I simply say this because I have spent my life defending my right to be sick, I have had people shoot me down all over the place, I have been bullied and belittled, I have been broken off with in relationships all because I don't look sick - doctors, friends (when I had them, most of them have left me now save for my 3 or 4 closest) and family, and because despite the fact my muscles are giving away, I am in horrible pain that makes me want to just off a building, I still walk and talk and do what I have to do every day, even filled with drugs and horrible things. I'm not attacking anyone, but this is just me stating for the record that no, I am not a hypochondriac, no I have not made this set of decisions and opinions over night, and that I am well enough educated medically to speak on what I think is going on with my body.
This is the first time I have ever had the courage to properly open up to a group of people who are experiencing similar issues as me (I am in a support group for chronic pain, but I don't talk much) and while I don't know any of you, I am taking a step of faith that I can hopefully connect with you and just find some friends who are going to take what I have to say seriously, rather than brushing it off.
Because beneath the usual calm, comical and logical exterior I like to put up - I am so, so very scared, because I can feel something is wrong and something needs to be done about it and that is why I am here, doctors are good but first I need information and I need friends.

I apologize for the long autobiography, it's overwhelming I am sure and a lot to take in but I would rather just tell you guys who I am and what has been going on so when we talk, you know all the facts and where I am coming from.
If you are all willing, I would like to talk in depth about certain problems (not just drop foot, other more personal stuff) and maybe find others who go through it as well and how they handle it - because if there is one thing I have learnt in my life, it is if I want answers and I want things done - I am going to have to do it myself and make the effort.

Thank you, for putting up with the paragraphs and whatnot! x
“The way I see it, every life is a pile of good things and bad things.
The good things don’t always soften the bad things, but vice versa, the bad things
don’t always spoil the good things and make them unimportant.”

The Doctor
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Isaac
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Re: Question Regarding Drop Foot

Postby 1eye » Sun Jan 31, 2016 9:03 pm

My brother, who had CLL, and a marrow transplant, was on big time opiates for a long time, and then they started giving him methadone.

During his recent hospital visit he was obviously addicted. He grew very argumentative when he could not get his next dose of demerol for 6 hours. He eventually was put on a lower but more constant dosing schedule, and after his tremors stopped he was off all opiates, methadone, etc. They booked him into rehab.

So anyway, what I do is every few weeks I take a medication holiday for a day or so, just to stay grounded. You have to watch out for dependency.

The other pain med problem I have had is liver and kidney. Advil affects your kidneys, acetaminophen affects your liver. I have even had brown spots on the skin over my liver. Naproxen is very strong; you need a buffer if you don't want holes in your stomach. So when I am in big pain (as I am now with my broken collar bone) I alternate. Nothing the same in less than 24 hrs.

Hope your pain stays at bay. BTW when I have been at my worst I couldn't hardly say HAAALLP!! using a keyboard. You must be doing pretty well to type all you have.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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1eye
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