Severe Leg Pain & other symptoms, Doctors ignoring me now (x-rays, thyroid med)

[rural lady]

This started over a year ago this month, I orig was dx with Isaac's Syndrome or that's what the Neuro thought it was, this is at DRMC in Dubois PA

Severe burning pain radiating from ankles up to my knees that will drop you right down

Feelings of muscle movements in arms, legs and neck without being seen visibility on the outside

Feelings that a hundred worms or bugs are crawling inside your bottom legs

My skin on legs at times feel like they are being stretched, its that feeling when you get a bad sunburn where you can feel every skin movement, without the sunburn

My legs feel stiff

My legs & feet are starting to burn now, my feet feel like they are in front of a fireplace

I was at Cleveland Clinic, had EMG and Skin Biopsy tests normal

Had ultra sound of legs

Had test for circulation with vascular doctor

MRI's done, CT scans done, some autoimmune blood work done

Back X-rays

Just about every test you can think of, my next appt at the Rheumatologist

First thing that happened I considered minor: in Apr-May last year my ankles started to swell up, ok had thyroid med changed (Synthryroid) thyroid med changed to higher dose, the following week it was switched back to the prev. dose.

In June last year while working outside my body all of a sudden felt as though I were running, rapid muscle movements you cannot see on the outside in arms legs all over, then heart is poundind, BP 190/101 called 911, in ER for 1/2 hr it stopped. Of course the ER suggest it was anxiety. I though they were insane, you don't get that kind of feeling from anxiety, I was working outside there was no way I was anxious or worried.

2 wks later in July I was outside again, I walked about 20 ft, my legs were starting to get heavy I thought I never felt this, then the pain started radiating from my ankles up to the top of my knees, I fell to the ground, it was as if a hot iron was inside my legs.

Call 911, as I laid in the ambulance for about 15 min it was passing mildly, get to ER after 30 min or so it stops. Ok so now I know it only happens when I am on my feet. They give me Ultram, ugh! so now so now I am too groggy, the pain had passed already.

Follow up with Doc, given 100 mg of Gabapentin, that helped some

Again it happened and back to ER, it subsides while lying down, given Percoset rx, as if I feel like going to the pharmacy after that happened.

It kept happening, Doc gives me BP med called Clonidine and to take that when bottom BP # is over 90, of course its over 90! I'm in pain.

I went to ER several times over the summer they did the usual blood work, CT scan, they suggest its arthritis & restless legs, I know damn well what arthritis feels like and restless legs, I had it once from a new med. On one visit to ER I told the doctor look this keeps happening I can't have my BP going that high and nobody is finding anything.

Had a EMG it wasn't one of the more detailed ones, given 300 mg of Gabapentin 3x day now its August this helps some but when working or using your legs a lot the pain comes back. Severe pain again, call Dr. in evening she says there's nothing she can do at that time, go to ER and come see her.

Well I wasn't going to ER again, they gave me the feeling I was there just to get drugs.

Go to Dr. again, she's going to get me appt with Neuro, no appt available till Jan 2013, I am totally disgusted now, I'm supposed to go in pain till January? I called another doc who could take me in a month 100 mi. away. Finally a cancellation at the local Neuro, they do the usual tap on my knees and joints, make me touch my nose etc. They can't figure it.

My PCP retires, I go to new Dr. I ask if I may have had a thyroid storm from the beginning, she says no, I would have died, she is hesitant to give me pain meds, I get rx-ed 1 Vicodin.

Ok next post this is long

[rural lady]

Its a month or 2 later, now its Sept or Oct ,I'm still in pain, using the scooter in stores, I go to the vascular surgeon, he don't think its circulation but schedules for test where they wrap the blood pressure cuffs all over you. Test is negative.

Find out I have a thyroid nodule, ok get that aspirated, results ok

In meantime, MRI's, Ultrasounds.

In November have muscle biopsy, that is sent to Pittsburgh, I wait again for results, negative.

More tests, Bone scan and others.

January this year go back to Neuro, I'm upset I say I'm not a little kid asking for a lollipop, at this day and age nobody should have to suffer with pain can I please have another Vicodin. Ok, I get rx-ed that. Next appt there made for June!

At this point I truly believe they all think I want drugs, now I do see another doctor for another problem I already take a narcotic, been taking that for 15 yrs, so why in the H would I want a Vicodin Rx, do they think I went to ER all those times and I'm playing around wanting a pain med for the hell of it? paying all these deductibles? God, I work outside, I need to use my legs, you don't realize that you use your legs for just about all of your movements.

Oh H more time passes, more X-rays, more blood work, something was ANA positive, they say that is nothing. Call the Dr. & of course now we have a call center, you cannot talk direct to the Drs. office anymore.

Feb-March now I start feeling my muscles in my arms & legs moving of course you cannot see it on the outside, I don't know if its under my skin or what, it's horrible to feel this going on in your body, it's driving me insane. Rx-ed Dilantin, ugh..I felt numb from taking this, I wasn't myself it effected my personality but it did help with this muscle problem. Neuro doc says don't go to ER because they cannot help with Neuro pain and to call him.

This keeps happening the pain the muscle movements, get rx-ed some more Dilantin, now the Dilantin is lowering my BP, call the PCP don't take full dose of BP med.

I call Neuro again, they want me to go to Cleveland Clinic to Neuro specialist, EMG Dr. there says its not Isaac's Syndrome, come back for Skin Biopsy.

In the meantime I am putting up with pain, the muscle movements feelings, the worms or bugs feelings of crawling in my lower legs, I call the PCP & Neuro they say wait for results of Skin Biopsy, For God's sake it's May now.

They suggest to me if maybe Depression...Are they out of their minds!! Burning leg pains and all the other things going on, my sister had that type of depression where you hurt all over, this isn't it!

Now its June my feet are burning, Neuro says its up to the Dr. a Cleveland Clinic.

In the meantime my legs are in more pain, burning pain, go to PCP she gives me another rx for Vicodin & tells me I will have to go to the pain clinic for this med now because of no diagnosis.

Skin biopsy normal, Dr. a Cleveland Clinic says to go to Rheumatologist. My Neuro doc says the Rheumotologist can run other auto immune blood tests, I ask why couldn't these have been done over the course of a year now? I think he said only that kind of Dr. can order those tests

All the while over the year not one doctor had me walk on a treadmill and monitor me, they would have surely seen something was wrong because I wouldn't of been able to do very long

Naturally the pain clinic in my area was booked up till August, it took my PCP over 1 1/2 wks to refer to a pain clinic, they found one online$%^, so now I'm going somewhere a 45 min drive, you check in at the window and they hand you paperwork and a urine cup, right out in the open, nothing discreet about it, I felt like I was at a NA or AA meeting, they don't prescribe meds 1st visit, the nurse gives you a plastic thing to put in your mouth to collect saliva. Next visit the Dr. says there is no reason your PCP could not rx Vicodin, he sends her a letter.

The burning pain started again this past week I just can't take it anymore, call Neuro on call, she says take another 1/2 Vic, call my Dr. in Neuro in AM, I do that. I wait, wait...I have other things to do.

Neuro leaves message not to call the after hours line, call during normal business hours and your next appt is in Sept, call office Monday to see if Dr. can see me, you could tell the gal was nervous leaving this message, Oh this is just great, I guess I was expected to go to ER and they wouldn't of done nothing, now I'm getting the brush off from Neuro, you can just feel that.

I was waiting 3 weeks for my PCP to get my referral to a Rheumotologist, I called several times, finally I called my insurance and they gave me someone to call, when my PCP finally called the gal says they are waiting for results from the Cleveland Dr. I say I received them 2 wks ago, so surely she got the results. In that 3 wks time I never got a call back.

PCP doesn't want to rx the Vicodin, I have to go to pain clinic, this is all a bunch of BS

I'm just getting the run around now, I feel they think I just want pain pills, or they think I'm one of those crazy people who like going to Drs. all the time, if they would check my damn records they would see I hardly went to my previous PCP other than the normal yearly test.

This is hell, they don't want you to call, they don't give a damn if you're in pain, they have you running all over the place, waiting months & weeks to get tests while you haven't been able to walk right or be able to do your work right for over a year, something is seriously wrong here, I have insurance, it just don't figure. What do I need to do go to a doctor in Switzerland?

These doctors don't know me, my family knows I like outdoors and doing my work and the last thing I want to do is to keep sitting down or taking another pain pill to go on another day.

Now I have to wait again to see the Rheum doc, I swear these drs. are trying to make me go out of my mind.

Each time you go to the Dr. you have to keep repeating your symptoms that they already know.

All of these test and doctors at my expense, driving to Cleveland, flying to Cleveland, losing a year of my life not being able to do what I want to do. Just how much is expected of patients? Is there some kind of rule you cannot have tests done sooner so you do not have to wait an entire year for all of them? What is it? is the DEA involved in my health care? Why should I suffer because some Doctors sell Rx's and some patients sell their rx's, this is all way too much, all of what I've been thru sounds crazy as hell.

Maybe next they will want me to, go into a mental ward to prove I'm in pain. Are these Doc's waiting for another symptom to happen, don't they see its progressed since June of last year.

I haven't even been to this site as much as usual, I can't take a vacation, I'm not one to lay on the beach all day. I like to keep busy, move, this has me so PO I don't know what to do.

I'm wondering about my thyroid causing this because this was the first thing that happened.

Sorry for the long post, I'm PO in pain and hopefully I can get some work done today, if the pain or symptoms gets worse I guess I'm on my own, can't call the Drs., DRMC is one hell of a place I don't know what their protocol is but it sure is not for the patients.

[SouthernBelleInUtah]

I have no idea what is going on but you sure have my sympathy! Not sure if it would help but it surely can't hurt: my podiatrist (university affiliated) told me to take 4 grams of L-Argenine daily to increase blood flow to the feet. I am diabetic and have diabetic neuropathy as well as some nerve damage from a lumbar fusion done in 1992. I buy it at any health food store or Wal-Mart, it is relatively cheap. It only comes in 500 gram capsules so I take 2 of them, 4 times per day. Breakfast, lunch, dinner, and bedtime. It has helped a lot.

Like I said, your problem may not involve restricted blood flow but it can't hurt but I am not a physician.

[Madeline2121]

Unfortunately, yes, the DEA is now involved in your healthcare. It's just the way it is now. If they cannot find something medically wrong with you and you are asking for pain meds they will assume you just want pain meds. Maybe you should get a referral to a pain clinic? I'm sorry you are having to go through this, and I agree that it is very frustrating that doctors are now suspicious of people who have legitimate pain. Good luck finding answers.

[Dollydo]

Have you looked in to Symptoms of Parathyroid Disease (Hyperparathyroidism)

[TFW46]

I agree that some of your symptoms sound a lot like diabetic nerve pain but blood tests would have shown that you either have diabetes or are a pre-diabetic.

The muscle movements sound almost like an erratic heart rate issue. Have you seen a cardiologist?

You say you've been taking a narcotic for 15 years -- which one and why? I can understand doctors being reluctant to give you more Vicodin, especially if you're already taking something else even stronger.

[rural lady]

Originally Posted by Madeline2121

Unfortunately, yes, the DEA is now involved in your healthcare. It's just the way it is now. If they cannot find something medically wrong with you and you are asking for pain meds they will assume you just want pain meds. Maybe you should get a referral to a pain clinic? I'm sorry you are having to go through this, and I agree that it is very frustrating that doctors are now suspicious of people who have legitimate pain. Good luck finding answers.

Thanks for reply, I'm being seen at a pain clinic now

[rural lady]

Originally Posted by SouthernBelleInUtah

I have no idea what is going on but you sure have my sympathy! Not sure if it would help but it surely can't hurt: my podiatrist (university affiliated) told me to take 4 grams of L-Argenine daily to increase blood flow to the feet. I am diabetic and have diabetic neuropathy as well as some nerve damage from a lumbar fusion done in 1992. I buy it at any health food store or Wal-Mart, it is relatively cheap. It only comes in 50-0 gram capsules so I take 2 of them, 4 times per day. Breakfast, lunch, dinner, and bedtime. It has helped a lot.

Like I said, your problem may not involve restricted blood flow but it can't hurt but I am not a physician.

Thanks South Belle, it wouldn't hurt to try

[rural lady]

Originally Posted by Dollydo

Have you looked in to Symptoms of Parathyroid Disease (Hyperparathyroidism)

Thanks, I took a look at that and that led me to Alk Phosphate in blood tests, mine was high but from reading it could have been from low Vit D, now I'm looking at my blood tests , if its not one thing its another.

[rural lady]

Originally Posted by TFW46

I agree that some of your symptoms sound a lot like diabetic nerve pain but blood tests would have shown that you either have diabetes or are a pre-diabetic.

The muscle movements sound almost like an erratic heart rate issue. Have you seen a cardiologist?

You say you've been taking a narcotic for 15 years -- which one and why? I can understand doctors being reluctant to give you more Vicodin, especially if you're already taking something else even stronger.

My heart is ok, the other drug is not related to Vicodin its not a pain med and it does not make you sleepy or anything like that.

Thanks for the reply