So Much Pain, No Answers, I Need Advice : (

So it's been a struggle with pain almost my entire life, I have muscle pains, HORRIBLE burning feet and strange feelings throughout my body.

I've had so many tests done: Evoked Response, EMG/NCV, Cervical MRI, Brain MRI, Several Labs, and and EKG

I've been referred to a Neurosurgeon and he said he's "proplexed", he's found Hypoesthesia in my feet and no reflexes in my hands. My feet constantly burn, 24/7, they burn worse at night. They're also "Pins and Needles" and it's spreading upwards!  He thought something Cervical and found a bulging disc and lordosis of cervical spine is reversing, he said this isn't the cause.  Now he's having me repeat the 3,000 dollar EMG/NCV and isn't seeing me again for 2 1/2 months.  My GP thought of Fibromyalgia, but the Neuro said the Polyneuropathy is something on its own!

I need some advice, I feel he has no idea whats wrong and isn't too concerned to find out.  What should I do?  What would you do?

Thanks for any advice,

Josh

[JoshuaY46013]

I left the medication out of the first post!

He has me taking 600 mg of Gabapentin 3x a day which helps, Tramadol 2x50 mg 4x a day and Ativan .5 MG as needed, I asked him to up my tramadol to 4x a day and he seemed very "concerned" but I guess understood and complied. He said that it was a lot of Medication, my GP before him said I could take that amount if I were having a rough day.  

[mastersullie]

Hey Josh

Just curious. Have you been tested for Diabetes. I had this burning in my feet and radiating pain also and come to find out my blood sugar levels were causing my nerves to go haywire. Now I am controlling my blood sugar levels and feel much better. just a thought. good luck!!

Adam

[mastersullie]

by the way. my pain doc told me gabapentin is useless. LYRICA which is pregabalin a stronger and much more effective form of gabapentin. it is a scheduled drug, and expensive but my pain doc gave me a savings card and it only costs $25 a month!!

[sandee1818]

Josh,
If you feel that the  Neurosurgeon is not interested in helping you find the reason for your pain then you should definitely have your doctor refer you elsewhere. It is hard to find a doctor that's willing to go that extra mile and keep looking for the answer sometimes but do not give up hope there are those doctors out there that do care and will go the extra mile.
Do not just settle after all this is your health, your life and it is important to get all the medical help you need to find the answers and get the correct treatment.
Everyday that goes by that your in pain is a day that you could be having pain free or with managed pain. So do not give up ,keep searching until you find the right doctor.
Please keep us updated:)

[JoshuaY46013]

Sandee, I appreciate you so much!  Thank you for the advice, you are right..

I'm a bit afraid to swtich doctors now tho,

I called yesterday to get a refill for my Ativan at my neurologists office like I have before.  Origionally I got them from my GP for the pain and to help sleep because of the pain. She referred me to a Neuro, which took over my meds.  When I first called them in to the Neuros office they filled them with no prob.  I had an APPT. after that and my doctor passed my room up twice which left me with a RUSHED 5 minutes appt.  He literally up and walked out of the room 5 minutes into the appt with NO goodbye.  My ativan is ready for a refill so I call the Refill line at my doctor, well they call back, this woman VERY RUDE says "I want to know why you didn't speak with your doctor about this when you had your appt.!"  I explained and she said that they would not fill them, that it was my previous doctors obligation and I wasn't responsible enough to talk to the Neuro about it.  They instructed me to call my GP which wont refill because they're the Neuros obligation.  

The Neuro office told me I had to wait for 2 1/2 months until my next appt to get a refill.  

I want to switch doctors but I don't want anyone to think it was because they wouldn't refill my med.  It has NOTHING to do with that, I could care less about that, I just feel like I am being treated badly..

Idk
Josh

[sandee1818]

Josh,
I am sorry you are in such a predicament. It is very difficult to explain to the nurse on the phone what happened during an appointment and have her understand. I would say try going to the office and explain to her in person and ask if she may be able to talk to the doctor and help you out until you can get in to see the doctor.
Nurses are the doctors gatekeepers and they sometimes have too much power in that regard in my opinion. I would suggest being sympathetic to her position but very kindly explain that you do need your medication and that your PCP will not prescribe it since he referred you there. The key word here is to be kind and patient. I know that is not right to have to do this in order to get the care your paying for but it is this way sometimes I am afraid.
I would also talk to your PCP and explain that you do not feel like this doctor is helping you not does he look like he will. Ask for a referral to a new doctor and get a second opinion. That is your right as a Pt and as I say all the time this is your body , your health, and you only have one life and you should not be spending it in pain and paying a doctor who is not helping nor plans to. Take control and get the help you need as your the only person that can/will.
Keep us posted and I really hope you get your medications and the proper treatment that you need:)

[opus88]

the treatment ur getting is inexcusable!! who cares what any of them think, get a referral and see someone else, they have no right to treat anyone like that.
and in regards to your pain....please get tested for MS
good luck to you

[Tuckamore]

Hi Josh,

You deserve better and do not accept such disregard and dismissal from the medical community. You pay to be treated in this manner? I think not.  

I agree with Sandee and Opus, find another physician. A 2 1/2 month wait to see a neurologist when there is no clear diagnosis is not acceptable. Remember we hire these physicians, they are not doing us a favor. You paid dearly for 5 minutes of nothing. There are great physicians out there that care about you and your symptoms. Please search until you find one. Right now it sounds like they are playing "pass the buck" with the medication and treatment/

Have you been tested for Lyme's, Lupus, MS and similar conditions? Lyme's can be difficult to diagnosis. It does not always show on a one time blood test.

Good luck and please keep in touch and let us know how you are doing.

Take Care,
Tuck

[JoshuaY46013]

Thank you so much for your concern, I really do appreciate it!

I do think that this is a little much, to have to wait several months and re-take a test that was negative!?!  It makes no sense to me..  

It's just so frustrating because I know how I feel, I don't have any great nights of sleep, I'm on the verge of being fired from my job as I've missed a month in the past six months.  I can't think or concentrate, I've become so distant from friends and family because of the pain.  I don't want to get out of bed in the morning, it's too much work, I can't clean my house and the list goes on.  The stresses some doctors put on us only make it worse, to give us the run-around?  How does that help?  It's so frustrating...

Thank you so much

[keep_praying]

Lets trade problems...  JK   I would get 3 opinions and make sure they are Board Certified. Let me know what they find but hopefully it is nothing to affect your life chronically.

[concerned621]

If you have not had blood work have it done immediately. Do not wait if you are having problems with this doctor, find another doc.   If the main problem with this doctor is he will not refill Ativan then you need to talk to him. The reason they most likely will not refill it is  highly addictive.  So discuss that with he or she.  It's normally used for anxiety however it is very helpful for nerve and muscle pain.  The burning in your feet sounds like nerve pain. I've had 7 surgeries on my spine.  The last surgery was a fusion on my lumbar spine, I had symptoms which included severe foot pain and burning. You had said they did not find back problems.  Again have extensive blood work done.  Address the shoes you are wearing, Hafflinger clogs are the very best and helped my feet and back problems dramatically.  I have fibromyalgia and burning in the feet does not necessarily mean fibromyalgia but everyone is very different.  Have you seen a Rheumatologist? It could be a form of arthritis.  
Be very careful with Ativan and a lot of the pills you are taking. I know how painful this is and you will need something.  If you are having anxiety or depression see a psychiatrist they too can prescribe Ativan for anxiety and it will help with that nerve pain.  I took Lyrica, supposedly better than Neurontin, Lyrica affected my vision.  So be careful, look at all the side affects because they are all full of them and are addictive.  Best of luck. Be your own advocate.  

[JoshuaY46013]

Thank you for the concern.  I only take ativan when my muscles are very tight and I feel horrible, it also helps a lot with sleep considering I can't get much of that anymore.

I've had TONS of bloodwork done, TONS of tests, ALL normal

Except a bulging discs in c4-c5, reversing lordosis in neck and elevated bilirbuin (gilberts disease)

EMG/NCV was Normal
Brain MRI was Normal
SSEP Was normal
Blood Work for any Autoimmune was normal
Protein blood tests were normal

I'm just at my wits end..

[JoshuaY46013]

I drink on average 2 - 3 gallons of water a day and I workout 5 days a week (well used to) I eat a very clean diet, and I work with a nutritionist.

BELIEVER ME, it hasn't cured my pains thus far, and I've been doing it for YEARS

Thanks anyways...

[Tuckamore]

Josh your correct. Good food and water will probably not "cure" you and it certainly won't cure the Gilbert's disease. Although drinking water and avoiding salt is important.

No one should suggest that they "trade problems" with you. We all have our own pain and problems to deal with, no better or worse than the next guy.

Please see another physician. At the very least your symptoms deserve to be treated until they can determine what is going on with you.  

[Revcharberry]

I am so sorry that you are going  through all of this drama in order to be cared for.  I take all of the meds that you do.  the postee who suggessted Lyrica is correct but be careful with Lyrica.  My thoat and tongue swelled and I could not breath although it worked wonders on the fibromyalgia and neuropathy pain in my legs.  Get tested for diabetes, it will cause the neuropathic pain and tingling and burning, Neurontin (gabapentin) does not work as well but takes the edge off significantly  I wosh you well in your quest to get help.  Love Peace and Blessings...Rev