Medical Question/Suggestions?

[Rose Pink]

I've been to my PCP (a GP) as well as an orthopedist and a neurologist. I've had several rounds of PT, x-rays, MRIs, an electrical conduction study and blood work. I've also had 2 polysomnographs (sleep studies). None of the tests or doctors can give me a diagnosis so my GP is calling my symptoms fibromyalgia and wants me to go to see a certain specialist. Of course, her practice is full and closed and they don't even return phone calls.

So I am turning to my Tug friends to ask if any of you have had (or know anyone who has) symptoms similar to mine. I have upper back pain, shoulder pain and now pain in my arms and hands. I have tingling in my arms and my fingers sometimes feel numb. I am exhausted most of the time.

My GP prescribed Lyrica for me. It made me even more tired and sleepy so he gave me nuvigil. I felt like I was functioning with both the brake and the accelerator pushed at the same time. My insurance won't pay for either of those drugs. And the Lyrica didn't help with the pain anyway. The neurologist changed me to gabapentin (Neurotin) which was much, much less expensive. At first I thought it was a wonder drug because my pain was almost gone. Then the pain came back full force. I increased the dosage and the pain ebbed somewhat then came back. I kept increasing the dosage per the doc's recommendations. Each time the pain would ebb then come back. "This is ridiculous" I thought to myself. Here I am taking a drug that is labeled an anticonvulsant and my brain keeps overriding the analgesic effects and I am getting woozy from it. So, I have decided to titrate myself off that drug and try to find another doctor but I don't know where to turn.

Suggestions?

 

[Jestjoan]

Due diligence, please

Yes, check out sublingual B-12 for a start. Ask your doctor.

 

[Jestjoan]

From a post on my health forum

"This is for people that may have overlooked a B12 blood test....

I had a bad B12 deficiency, diagnosed 3 years ago.
My symptoms were as follows:

short term memory loss
shortness of breathe
tingling in my left hand and or fingers

My doc diagnosed me and after initial treatment (frequent doses of B12) I have a B12 injection once per month.

I have felt so much better since being treated and I also gained much needed weight. "

I'm not having much luck searching my forum but I know more info is there. I'm getting too many non helpful results.

Have you been diagnosed with peripheral neuropathy?

 

[MommaBear]

See a different neurologist for a second opinion!

 

[ricoba]

I don't have any advice, except I know you have been under a great deal of stress and perhaps some of the problem is directly related to this.

Take care and I hope you find a proper diagnosis soon.

 

[chellej]

Yes, check out sublingual B-12 for a start. Ask your doctor.

I had similar symptons and it was also a B12 defieciency. One little vitamin pill a day has done a world of difference for me. I agree get the blood work.

My Doctor has my take the sublingual kind but I have a friend at work whose mom gets shots.

 

[Rose Pink]

"This is for people that may have overlooked a B12 blood test....

I had similar symptons and it was also a B12 defieciency.

Yes, I have been tested for B-12. Mine is in the upper range of normal, so I do not have a B-12 deficiency.

 

[Jestjoan]

SpectraCell testing

http://www.spectracell.com/mnt/

If you are on Medicare, it will cover the testing other than two tests which cost me $62.

I was deficient in Vit. C and Magnesium.

 

[Rose Pink]

See a different neurologist for a second opinion!

The neurologist I went to came highly recommended and she did spend quite a bit of time with me going over my symptoms and ordering an MRI, doing a nerve conduction study and ordering blood tests to check for systemic causes. All turned up negative. I don't know what more a different neurologist could do. Are there other tests? Something else I should look for?

I don't have any advice, except I know you have been under a great deal of stress and perhaps some of the problem is directly related to this.

Take care and I hope you find a proper diagnosis soon.

Thanks. I did some reading on fibromyalgia last night and my symptoms do fit but the spectrum of symptoms is so wide that the fibromyalgia net would likely catch them all. That is what is so frustrating for me. There is no test for it, it comes down to ruling out other causes. Even the 11 out of 18 pain points that is usually used is not really diagnostic. I keep wondering if we are missing something.

 

[Rose Pink]

http://www.spectracell.com/mnt/

If you are on Medicare, it will cover the testing other than two tests which cost me $62.

I was deficient in Vit. C and Magnesium.

Not deficient in those, either.

 

[MommaBear]

The neurologist I went to came highly recommended and she did spend quite a bit of time with me going over my symptoms and ordering an MRI, doing a nerve conduction study and ordering blood tests to check for systemic causes. All turned up negative. I don't know what more a different neurologist could do. Are there other tests? Something else I should look for?

Every doctor, no matter how highly trained or respected, has a different clinical experience than other providers. It may well be a different neurologist will have had a different patient experience than the first and may be able to diagnose you or steer you in a different direction than the first. A second opinion is not a vote of "no confidence" in the first provider, it is just seeking more information. You haven't found the diagnosis yet, so you need to continue seeking an answer.

 

[MommaBear]

PS- Good luck in your search for the answer. Please do not get discouraged and give up- there is an answer out there, you just haven't found it yet.

 

[Tropical lady]

for what it's worth.....

Have you been tested for Lyme's Disease? This can be easily overlooked as a probable cause if you do not live in a tick infested area. (I don't know your home area) It also has a variable range of symptoms for each person which can make it difficult to diagnose. A lyme titer would tell you if that might be worth antibiotics.
Not a Dr, but live in tick country.......

 

[pjrose]

First, Hugs. Why don't we have a Hugs smilie?

Ricoba is absolutely right about the stress you've been under. That could certainly be related.

I echo the advice to see a different neurologist. Second opinions can be helpful.

If the Lyrica worked but made you sleepy, how about taking it at night? I improved my daytime tiredness and night time insomnia by taking two of my meds at night instead of the morning.

What about a chiropractor? I'm generally not a big fan, but the upper back and shoulder pain may be something that's out of whack or pinched, and that could easily lead to the arm and hand problems. I'm thinking that being stretched may help you, as will learning some specific stretches you can do at home.

Similarly, maybe Physical Therapy, also to stretch out the spine.

Grasping at straws here, but is there anything you're eating that could be related? Red meat, or ???

 

[MULTIZ321]

Rose Pink,

I'm not sure where you live, so I can't give specific advice about practitioners and/or medical centers that would be convenient for you.

I would consider going to a University-affiliated medical training center. Do a search for who is on the neurology/fibroneuralgia faculty and determine if they also see patients privately. If so, make an appointment for a second opinion as already suggested.

Also, would consider an evaluation at one of the Mayo Clinics. You can combine it with a timeshare vacation if you''re so inclined.

Good luck.

Richard

 

[dougp26364]

Are you on a statin or cholesterol drug?

 

[Rose Pink]

... A second opinion is not a vote of "no confidence" in the first provider, it is just seeking more information. You haven't found the diagnosis yet, so you need to continue seeking an answer.

Wise counsel, thank you.

Have you been tested for Lyme's Disease? .......

No, I haven't. I don't think our area is usually considered at high risk for that, but we do have deer and rodents so it isn't impossible. I will look into this further.

Ricoba is absolutely right about the stress you've been under. That could certainly be related.

If the Lyrica worked but made you sleepy, ....

What about a chiropractor? ....
Similarly, maybe Physical Therapy, also to stretch out the spine.

Grasping at straws here, but is there anything you're eating that could be related? Red meat, or ???

Re the stress, thinking back over my life, I do see a correlation between high stress times and the timing of symptoms. Not always, but often enough for it to raise a red flag. The brain is a very powerful organ. It can make us see hallucinations so maybe my pain is a sensory hallucination. Some fibromyalgia researchers think that the nerves and brain are overreacting to muscular stressors and send pain signals out of proportion to the actual muscular stress.

Lyrica did not reduce my pain. It just made me more zombie-like than I already am.

I am afraid of chiropractors. I am afriad they will damage my spinal cord and make me quadriplegic. You have an IV phobia and I have a chiropractor phobia. Let's just not go there.

PT--have had several sessions of PT as well as iontophoresis (or however that is spelled). That is where they drive medication into your muscles using a positive and negative charge. I've also seen a massage therapist.

Rose Pink,

I'm not sure where you live, so I can't give specific advice about practitioners and/or medical centers that would be convenient for you.

I would consider going to a University-affiliated medical training center. Do a search for who is on the neurology/fibroneuralgia faculty and determine if they also see patients privately. If so, make an appointment for a second opinion as already suggested.

Also, would consider an evaluation at one of the Mayo Clinics. You can combine it with a timeshare vacation if you''re so inclined.

Good luck.

Richard

The fibromyalgia doctor recommended to me by my PCP as well as by the neurologist is the state's foremost authority in fibromyalgia. Unfortunately for me, that means she is the most sought out and her practice is full and closed so I need to find another doctor. Rheumatologists may be the way for me to go. Some researchers think fibromyalgia is a form of arthritis. I have a friend with fibro and she gave me the name of her rheumatologist but warned me that it can take months to get in to see him. (Well, that sounds familiar .)

I will take your advice about the medical university. I have an appointment in a couple of weeks with a gyn at the university clinics and I will ask for her input as well. She may know who is good on the faculty and who would see a new patient.

Mayo Clinics and a vacation? I like that idea, too.

Are you on a statin or cholesterol drug?

No, no, no. My PCP wanted to put me on one last year and I said no. I am afraid of them. My sister was on one and had a very bad experience. Since her DNA and mine are similar, I don't want to even try. I realize you are asking this as some of the statins can cause serious side-effects, muscle pain being a symptom of rhabdomyolysis. I've also considered that maybe, since I had high cholesterol, my pain might be from peripheral artery disease but none of the doctors has suggested this. My HDL is high, too, so I am not really all that concerned.

Doug, I don't do well with most drugs. The side effects are usually worse than the remedy for me. When it comes to things like pain meds, either they make me so nauseated or they don't dull the pain much. If they do work, they only work for awhile before my brain adapts and figures out a way around them. (at least that's what it seems like to me)

 

[ricoba]

Re the stress, thinking back over my life, I do see a correlation between high stress times and the timing of symptoms. Not always, but often enough for it to raise a red flag. The brain is a very powerful organ. It can make us see hallucinations so maybe my pain is a sensory hallucination. Some fibromyalgia researchers think that the nerves and brain are overreacting to muscular stressors and send pain signals out of proportion to the actual muscular stress.

I think you should check out all the symptons and possibilities, but maybe you should go see a good counselor/therapist as well.

Again, take good care of yourself. You are the only Rose Pink we have on TUG!

 

[Big Matt]

It sounds to me like it could be something related to posture/spine, etc. Have you gone to someone for that?

I know I'm being simplistic, but I can say from experience that your body gets all messed up by the slightest imbalance.

 

[Rose Pink]

I think you should check out all the symptons and possibilities, but maybe you should go see a good counselor/therapist as well.

I thought that was what TUG was for.

It sounds to me like it could be something related to posture/spine, etc. Have you gone to someone for that?

My orthopedic MD said I have great posture. But I know what you mean. One thing out of alignment will throw everything else off as the body tries to compensate.

 

[DebBrown]

There's nothing wrong with simplistic ideas. I think doctors tend to overlook some of the simplest solutions.

I was having pain issues a few years ago. I have arthritis in my hips and developed shooting pain down my legs at night that was keeping me awake. After quite a bit of research, I eliminated MSG, Nutraweet (aspartame) and caffeine from my diet and, amazingly, it cleared up. Evidently alot of people have migraine and pain issues related to these supplements.

I'm not saying that your problem is necessary the same as mine but it sure doesn't hurt to try some easy solutions. There are quite a few sites on the net related to fibromyalgia and chronic pain. People with experience can recommend a number of holistic and simple treatments.

deb

 

[pwrshift]

Are you a member of Best Doctors? Some benefit plans have this pkg and they analyze your results to date and consult with medical experts to help with diagnosis...sort of like a second opinion. Believe they sell individual memberships too.

http://www.bestdoctors.com/us/What-We-Do/For-Members/Our-Services.aspx


Brian

 

[lorenmd]

a neurologist is the doctor you want, or a physiatrist ( physical medicine and rehab) have you been tested for MS. it does sound as if it is a central nerve problem and pain causes exhaustion. a second opinion is warranted.

 

[pjrose]

I thought that was what TUG was for.

Most definitely!

My orthopedic MD said I have great posture. But I know what you mean. One thing out of alignment will throw everything else off as the body tries to compensate.

If not a chiro, how about an osteopath? I'm still thinking s-t-r-e-t-c-h - as in pulling your head one way, and your legs the other. Have you lost height?

 

[shagnut]

Be careful with the neurotin (sp) . When I went to a new Dr , he immediatly took me off as it could cause the "shakes" I was using it for leg cramps but glad to be off it. Good luck!! Hugs, shaggy