Flippant doctors

Hi everyone - I've been off line for a while...but I'm back! I went to Thailand recently and it was hot, and ironically my feet did not flare up as much as they do in cold weather (like right now in South Australia)... I don't really understand why...

The last time I saw a doctor I explained the symptoms - feet feel like they are burning when elevated (especially at night - though sometimes they feel cold, but putting a warm wheat pack just brings on more pain), the veins in my feet become really prominent, my calves hurt, I can't have anything on my feet (socks, blankets), and the only relief I can get is to put on a fan so that the air moves over my feet. I'm snuggled up under my doona to stay warm, while my feet are stuck out with a fan on them!!! The doctor basically said it wasn't EM and to take aspirin.

I don't know what to do...sometimes I almost want my feet taken off...

What do you do when you feel like you are not believed? Tests were done for neuropathy, but not for small fibre neuropathy (too expensive apparently). I feel like I'm being viewed as a hypochondriac, and this especially occurs when doctors find out I have (well controlled) major depression...

It's driving me crazy! What would you all recommend for my next steps?

BTW - my uncle told me he and my other uncle both had burning feet too...

Kate, have you applied for the Xenon testing? If it is familial you may learn something and you will be able to show it to the doubting doctors.
Have you tried aspirin already?

Hi Nel - thanks for the reply - I've tried aspirin, but it doesn't do a lot. I still wake up with burning feet most nights and sometimes have it during the day too. I've looked up Xenon testing, but can't find anything about it in Australia, so I've contacted my local pathology service to see if they can help. Thank you so much for the suggestion!! :-)

Kate you just have to email ■■■■■■■■■■■■■■■■■■■■■■■■■ to apply. I know someone in NZ who has participated. Look back at discussions as mads posted one on the subject of the xenon trial. It’s all very simple. They will send you a kit and you just do the spitting and send it back! They will send the result in a few months to your nominated doctor and you have to get them from her/him.

I am sorry aspirin hasn’t helped Kate. I think I was just so fortunate that it worked for me within a week or two.



Nel said:

Kate you just have to email ■■■■■■■■■■■■■■■■■■■■■■■■■ to apply. I know someone in NZ who has participated. Look back at discussions as mads posted one on the subject of the xenon trial. It’s all very simple. They will send you a kit and you just do the spitting and send it back! They will send the result in a few months to your nominated doctor and you have to get them from her/him.

You sound much like me. I saw several doctors before getting my diagnosis, and a few incredulously refused to acknowledge that EM existed, because they'd never heard of it. Had a normal nerve test (but didn't get small fibers tested). I don't initially tell doctors that I've dealt with depression/anxiety anymore, because many (not all) have immediately brushed off anything I subsequently told them. I do mention it if there's talk of any treatment, to be sure there are no contraindications. If I were you, I'd not give another dime or minute to any doctor who doesn't believe you have the symptoms you describe. If they don't listen, they are not doing their job.

I also have family members with (milder) symptoms, leading me to strongly suspect there's a genetic factor. However, I have completed the Xenon testing and I do not have that particular SCN9A mutation.

Having lived in hot and cold climates, I too have found that my condition is worst in cold winters. My flares are more intense, frequent, and easily triggered; I get chilblains that pain me for a month at a time, and my dry "winter skin" gets damaged very easily (from even gentle rubbing of footwear). In warm weather, I get by much better and deal with less pain.

Hi Libby - fun isn't it! I wanted to do the Xenon testing, but it's closed and it seems it is not a common test...if tested at all, in Australia. It's strange that cold weather affects both of us more, as by nature it would seem that hot weather should be the culprit.

Well I'll keep on keeping on and see what I can find...

How do you deal with the dry skin? The skin on my feet cracks and hurts all the time!!

Hi Kate.
I know the feeling. I had a very frustrating appointment with my gp on Monday where she washed her hands of me and told me to keep going with my Internet research. She doesn’tknow aboutit anddoesn’t wantto learn.
I was furious. I am now looking for a new gp who I will screen to specifically help me with EM.
I applied and was accepted into the Xenon research, I’m waiting for the spit kit to arrive.

Good luck! My support and sympathy from across the ditch

Hi Kate. I don't think I would have been able to get (er, afford anyway) the genetic test on my own either. My hypothesis is that the flares are worse in winter because the skin goes from being icy cold to flaring hot, going through a larger temperature range than in summer (when they start out normal or mildly chilly before a flare comes on). I haven't been able to keep the skin of my feet in good condition in winter, but lotion helps some. It seems the more intense flares of winter also cause more swelling and damage to the skin, on top of the skin already being dry. Blegh!

KateB said:

Hi Libby - fun isn't it! I wanted to do the Xenon testing, but it's closed and it seems it is not a common test...if tested at all, in Australia. It's strange that cold weather affects both of us more, as by nature it would seem that hot weather should be the culprit.

Well I'll keep on keeping on and see what I can find...

How do you deal with the dry skin? The skin on my feet cracks and hurts all the time!!

Kate I am so sorry you missed the testing. They were running it until December but clearly have had more participants earlier then expected. You missed it only by a very short time.

With regard to the cracked skin which must be a real problem in a hot climate, I use the cream sold for cracked heels all over the soles and sides of my feet every day. It contains a lot of urea and it does the job but takes a lot of perseverance. Once I got rid of the cracks it has stayed good. I am having difficulty with my right foot since my accident as my leg has little movement and I can barely reach my foot with either hand but I know if I miss a few days cracks will reappear…

Kate, if a doctor told me that EM doesn't exist, even so I could show him lots of articles about EM from Doctors, Clinics and Research Institutes on the Internet , he is an arrogant prick and I wouldn't feel comfortable to have him treat me for ANYTHING - not even a cold. It is sad that there are docs like that and I am sorry that you had to deal with it. There is only one solution - try another one and hopefully you'll find one who already knows about EM or at least one with more understanding and willingness to help. Good Luck

It took me 2 years of non stop searching to find a doctor who would listen and believe me. I now have a good team of doctors helping me. Funny if you can just get that first doctor then it tends to go more smoothly because they send their records over stating you have these symptoms and they will then believe you because they heard it from another doctor!

I first found my GP. He was kind and listened from the start. He believed me and said those magic words......I don't know.

He said ..I don't know but we are going to figure this out. It might take a while but we will. If you can find a doctor capable of acknowledging he/she doesn't know everything and cares enough to find out what is going on that's your first step.

I had seen at least 10 different doctors before finding mine DR bateman in Tacoma Washington. If you live in Washington state he is the one to see. He had no knowledge of EM and it still took a good year after seeing him to figure this out but he never gave up. He would send me to sapecialists he thought might be able to help and I saw him no less than once a month. I didn't have to do one test then wait 3 or more months to see him again and go from there. He even took out this giant medical book with me in his office to search through it looking for anything that might be causing this.

After seeing the specialists he sent me to ( Rheumatologist, vascular surgeon, Dermatologist, Neurologist, And I am sure many more) If I came back to him and said they didn't listen or believe me he would just write out another referral to see a different one! After all of that we still had no answers so he thought I should see someone that deals with rare unknown diseases and started the paper work for me to get into a research study on the east coast. He also submitted a referral for me to see a vascular specialist at the Mayo clinic in Rochester MN. Even after hearing back from the Mayo clinic that They didn't think I would benefit from a vascular specialist there and was denied he resubmitted a referral there to see an internal medicine Doctor he said just to get your foot in the door. In the end I saw a good 10 to 15 different doctors at the Mayo clinic and was there for a month but I left with a diagnosis of EM!!!!!!

As terrible as wwEM is I was just so happy to have a diagnosis. No more being told I was crazy!!!! I even had to go through 3 different Psychological evaluations through the years and one at the Mayo clinic. I'm talking taking this 2 hour test to see if I was crazy. Every time I passed with flying colors. I wanted to get some sort of ribbon that said certifiably not crazy to wear to my future doctors appointments!!!

After My EM diagnosis I came home and we started out trying to find an EM doctor. We couldn't find one that knows how to treat it per say but we did find a Rheumatologist that is willing to go through the research papers I bring to her and try the varying treatment. I also got in with a pain clinic that had no previous knowledge but they are willing to be educated with my research I bring in and work with me that way. My pain doctor just started me last week with a lidocaine infusion and mexilitine !!!!!! That is for another post which I will do shortly.

Sorry about the long story but it was a long process! My tips.... Don't give up. If they don't listen or believe you Just go somewhere else till you find someone that does. This can take seeing 10- 20 different doctors and a few years but it s well worth it.

Find someone that is willing to admit they don't know and willing to read and use EM research documents you bring to them.

It is important to find someone that doesn't hold Depression against you. Depressed people get sick too!!! Often the illness itself is what is causing the depression not the other way around. I wish depression kept you from getting any other medical condition! I would work on getting depressed straight away!

Hang in there , don't give up, You will eventually find the help you need.

I am sorry it is such a process. I know it well.

Take care,

Alina

How many aspirin do you take?

Nel said:

I am sorry aspirin hasn't helped Kate. I think I was just so fortunate that it worked for me within a week or two.

Nel said:
Kate you just have to email ■■■■■■■■■■■■■■■■■■■■■■■■■ to apply. I know someone in NZ who has participated. Look back at discussions as mads posted one on the subject of the xenon trial. It's all very simple. They will send you a kit and you just do the spitting and send it back! They will send the result in a few months to your nominated doctor and you have to get them from her/him.

Kate, Like many others have written, it has taken me 4 years to finally get a diagnosis, lots of different specialists, many, many tests and blood given, and enough frustration and depression to last 3 lifetimes. I pray that your search for a diagnosis will not be that long. I have other medical problems to go along with it...the small nerve fiber neuropathy (that no doctor tested for until the last one that diagnosed the EM) and an autoimmune disorder. I wish there was another way of getting to the answers you need but there isn't yet. We all hope there will be an EM research center someday.

With out trying to sound trite...hang in there,

Don

just a 75mg tablet Jimm. I would love to take a much bigger dose and see if it helps more but my doctors are already unhappy that I take it at all. To do with my age and because I have to take warfarin.



jimm said:

How many aspirin do you take?

Nel said:

I am sorry aspirin hasn't helped Kate. I think I was just so fortunate that it worked for me within a week or two.

Could these doctors possibly be MORE callous then they are? I have seen Endos, Rheumos, Vasculars. Neuros, Cardios. Dermos,Allergists Psychologist for Biofeedback. Pain Drs., etc. I have other auto-immune illnesses but this EM and Raynauds together at a time are simply running, ruining, and crippling me.

Every single "specialist" I have seen has referred me to another specialist. I am amazed at their lack of knowledge and empathy.

I have seen doctors at Duke and UCLA, supposedly 2 of the highest rated hospitals in the country. Awful. I get more help from my local GP, who is a PA, and the local pain Dr. At least they try, and care.

I have another Rheumo, and Dermo. next week, and a food allergist. After that I am DONE. I do not have the energy to keep chasing these idiots and getting nowhere. This will be the third Rheumo. They are the ones who supposedly manage these illnesses.

I feel your frustration. If I wasn't so allergic to the pain meds I would probably be getting and taking my own prescriptions, plus buying them off the street!

This is such a horrible mental and physical place to be in.

Thanks everyone - I really appreciate all of your support (and Don, you didn't sound trite at all! :-)) I will hang in there, and just do the best I can in the meantime. One thing I'm planning to do is go and seek counselling on dealing with pain - psychologically that is! I don't want it to impact my life any more than necessary. Thanks everyone...

How's your progress now, Alina? You're so diligent, amazing role model with how you're handling the research and the doctors. Have the treatments helped? I just started taking Neurontin. Have you ever been on it?

Alina Delp said:

It took me 2 years of non stop searching to find a doctor who would listen and believe me. I now have a good team of doctors helping me. Funny if you can just get that first doctor then it tends to go more smoothly because they send their records over stating you have these symptoms and they will then believe you because they heard it from another doctor!

I first found my GP. He was kind and listened from the start. He believed me and said those magic words......I don't know.

He said ..I don't know but we are going to figure this out. It might take a while but we will. If you can find a doctor capable of acknowledging he/she doesn't know everything and cares enough to find out what is going on that's your first step.

I had seen at least 10 different doctors before finding mine DR bateman in Tacoma Washington. If you live in Washington state he is the one to see. He had no knowledge of EM and it still took a good year after seeing him to figure this out but he never gave up. He would send me to sapecialists he thought might be able to help and I saw him no less than once a month. I didn't have to do one test then wait 3 or more months to see him again and go from there. He even took out this giant medical book with me in his office to search through it looking for anything that might be causing this.

After seeing the specialists he sent me to ( Rheumatologist, vascular surgeon, Dermatologist, Neurologist, And I am sure many more) If I came back to him and said they didn't listen or believe me he would just write out another referral to see a different one! After all of that we still had no answers so he thought I should see someone that deals with rare unknown diseases and started the paper work for me to get into a research study on the east coast. He also submitted a referral for me to see a vascular specialist at the Mayo clinic in Rochester MN. Even after hearing back from the Mayo clinic that They didn't think I would benefit from a vascular specialist there and was denied he resubmitted a referral there to see an internal medicine Doctor he said just to get your foot in the door. In the end I saw a good 10 to 15 different doctors at the Mayo clinic and was there for a month but I left with a diagnosis of EM!!!!!!

As terrible as wwEM is I was just so happy to have a diagnosis. No more being told I was crazy!!!! I even had to go through 3 different Psychological evaluations through the years and one at the Mayo clinic. I'm talking taking this 2 hour test to see if I was crazy. Every time I passed with flying colors. I wanted to get some sort of ribbon that said certifiably not crazy to wear to my future doctors appointments!!!

After My EM diagnosis I came home and we started out trying to find an EM doctor. We couldn't find one that knows how to treat it per say but we did find a Rheumatologist that is willing to go through the research papers I bring to her and try the varying treatment. I also got in with a pain clinic that had no previous knowledge but they are willing to be educated with my research I bring in and work with me that way. My pain doctor just started me last week with a lidocaine infusion and mexilitine !!!!!! That is for another post which I will do shortly.

Sorry about the long story but it was a long process! My tips.... Don't give up. If they don't listen or believe you Just go somewhere else till you find someone that does. This can take seeing 10- 20 different doctors and a few years but it s well worth it.

Find someone that is willing to admit they don't know and willing to read and use EM research documents you bring to them.

It is important to find someone that doesn't hold Depression against you. Depressed people get sick too!!! Often the illness itself is what is causing the depression not the other way around. I wish depression kept you from getting any other medical condition! I would work on getting depressed straight away!

Hang in there , don't give up, You will eventually find the help you need.

I am sorry it is such a process. I know it well.

Take care,

Alina

Hello monkey. No I haven’t taken neuron tin unless that is another name for a different med like gabapentin or lyrica??? I gave tried those2. Has it helped you? I have yet to find anything that has made a real difference but I have high hopes for my current treatment. I just had a lidocaine infusion and started mexilitin if that’s how you spell it. I got great relief the first few days after the infusion and then it started wearing off. The mexilutine. Will take a few months to build up in my body enough to make a difference and it is suposed to have a similar effect as the lidocaine infussiin. We are going to try another infusion after I have been on my meds longer as I think that will prolong the effect of the infusions.
We are still experimenting. I Keeping My Fingers Crossed :slight_smile:
Take care,
Alina

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In my experience many doctors only want patients who have an illness they can fix. We all know medicine is still in its infancy and I am always shocked when I come across a doctor who refuses to hear or learn from my health problems. Medicine is constantly evolving and any doctor who is not open to possibilities should not be a doctor in my opinion. Saying something doesn't exist is just plain shortsighted and ignorant. Medicine used to say asthma and diabetes was in the mind. I call bulls hit to those doctors that want to insist that things like pain, depression and anxiety are all in the mind. Everything in our bodies is interconnected and I have to wonder incredulously at a doctor that can't or refuses to see this. Especially .. depression can be a symptom of a thyroid problem. Tachycardia is not just 'nerves'. My pain specialist says that a right to treatment and pain relief is a human rights issue. Yay for him. He travels the country giving lectures to other doctors about the necessity of treating pain in their patients. That is a doctor I like.

Blue