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Had an MRI of my neck and EMG testing recently, ordered by my rheumatologist because he wanted a second opinion from another neurologist regarding my diagnosis of cervical dystonia and my other neurological symptoms including TIA-like episodes where I lost vision in both eyes for an instant plus developed headache, facial numbness, disorientation, etc., and the odd jerks and spasms I developed a few months later.

I thought I was agreeing to a soft tissue MRI of my neck and EMG to diagnose the enlarged and swollen SCM muscle that has caused unremitting pain and disability since May 3 of last year. When it was all over, I learned it was not a soft tissue MRI but one to evaluate my spine re: nerve impingement, as was the EMG.

The result of the $5000 + expense was that I had mild carpal tunnel syndrome (duh! I have had this in both wrists for approximately 26 years, first diagnosed in 1983!) I was upset, expressed my frustration, and clarified my needs to the neurologist at the time of the EMG. I was scheduled to see the neurologist again yesterday. I hoped that I could have a more constructive conversation with him about my neurological symptoms. I also wanted to discuss my loss of smell, steadily increasing tinnitus and gradual loss of hearing over the past few years but I never had a chance.

I was told that all of my problems were most likely caused by the (minor, or small, or barely visible) nerve impingement in my neck at C3/C4 (if I remember correctly) All of my other symptoms were denied and it was clear he didn't believe anything I said including the diagnosis and successful treatments I had received from other physicians, including treatment for synovitis which is what I think is affecting my neck as well at this point because since the EMG (which was so painful for me that it had to be stopped before it was completed and which caused a flare of the synovitis in my thumb, wrist, forearm, and bicep and which sent pain up into my SCM muscle), I have been able to cause pain in my SCM muscle by flexing my thumb in a certain way.

Anyway, he said everything was due to nerve impingement. When I disagreed with him and tried to clarify my history and symptoms and tried to discuss a medical article I had that brought all of the symptoms together under CNS lupus or other autoimmune disease that affects the central nervous system, he refused to look at the article, refused to discuss things, and refused to continue treating me.

He wanted to refer me to another neurologist 3 or 5 hours away for a third opinion and for treatment, stating he was going to write an extensive letter regarding his opinion to the third neurologist, my rheumatologist and my GP, including in his opinion that I'm refusing treatment for nerve impingement which is his recommendation.

There were accusations that I had diagnosed myself and that unless a physician agreed with my diagnosis, I would not allow treatment (I didn't know anything about lupus or autoimmune diseases in general until my GP expressed concern I had lupus in October or November of last year, after I tested positive for anti-nuclear antibodies, and I started researching it to see if it fit --- so it was her idea, not mine!

The 1st neurologist and several other specialists now believe I have an autoimmune disease as well and are recommending treatment by a rheumatologist) The neurologist refused to discuss the positive ANA tests, the ultrasound verifying my right SCM muscle is twice as large as my left and that my pain is coming from there, etc.

He stated I had to go to the University Hospitals and Clinics three hours away or to Mayo Clinic 4-5 hours away if I wanted diagnosis and treatment. He told me he had talked to my rheumatologist at length about my case and they are both in agreement that I can't get treatment locally.

My rheumatologist has not been happy about the fact that all of the other physicians treating me (other than the current neurologist) think it's an autoimmune problem at this point and he has been trying to send me away as well (treatment by another rheumatolgist in the area does not seem to be an acceptable option for him either) He reluctantly prescribed Plaquenil and gabapentin the last time I saw him, based on recent tests and biopsies and the opinions of other physicians, including my GP, but I could tell he wasn't happy and that he believed it was the wrong treatment (he's still certain it's fibromyalgia and that nerve impingement is causing my problems in my neck and right arm)

I told both the neurologist and my rheumatologist I couldn't afford to go away for care and that I'm not physically able to make that kind of trip a good deal of the time --- both scoffed at that as well, saying I was making up still more excuses to refuse the treatment recommended by them. I can't pay for something that I have no money for and it's not possible to drive a 6 to 10 hour roundtrip if I'm in so much pain I can't function! And I have no one to help me! I now have medical debts that I have no way of paying unless I quit purchasing food, housing, and utilities --- and I can't afford to rack up more debt I have no way of paying.

Other people are successfully treated for lupus and other autoimmune diseases locally so why can't I get the rheumatologist and 2nd neurologist to believe me and to accept and/or consider the findings, concerns and recommendations of my GP, two dermatologists, 1st neurologist, cardiologist, physiatrist, podiatrist, ENT, orthopeodist and a pain specialist and to treat me????

I just don't understand what the block is. How do I have a successful dialogue with these people? I try to give them supporting documentation, including medical records, but they refuse them or reluctantly accept them but don't look at them.

I don't know how I can continue with my rheumatologist at this point, given what the neurologist said they discussed, but I don't have the resources or ability to travel a long distance for care and I (and my husband, my son, my grandson, and the other employees at my husband's company) may no longer have health insurance as of October because we will no longer be able to afford the premiums and deductibles due to the high cost of my medical care (or my attempts to get medical care) over the years, especially over the past year.

I was denied disability several years ago so that's not an option for assistance and I've been unable to obtain employment with (or without) benefits.

Sorry for the long, rambling post but I'm expecting the worse when I see my rheumatologist in June, despite the fact that many symptoms have improved or disappeared since starting plaquenil and gabapentin in April.

I guess I just needed to vent.

Barb
 

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:hugbetter: hi barb

my gosh, i don't know what to say. neurologist are not my favortie doctors, they are usually arogant, insensitive, and down right rude. mine makes me feel like an idiot. i refused an LP once and he wrote my gp and told him that, but it wasn't hateful just fact. i have similar syptoms (spell brain fart) as you along with some others and my test results were vague. but they at least said that i have some type of demyilation (bf) and neuropothies plus i have increasingly deminished reflexes, some non-exsistent reflexes.

i wish i could say something to help you. you must be a wreck. i know i would be. i had my meltdown this past week or so and it was nothing like what you just went thru. no one should be treated that way. unfortunately more and more of this type of physicians are popping up and its always the really sick patients who find them :wink2:

please try to rest
feel better

:foryou:
hugs and kisses
 

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Discussion Starter #3
Thanks for your kind words spellbinder.

I forgot to mention that I had already gone through all of this last year. My GP took multiple xrays of my cervical spine and ordered a CT scan done, both with and without contrast, plus an ultrasound. She then sent me to a pain specialist for injections. He said there was absolutely no way my symptoms were due to a pinched nerve so he would not under any circumstances do an injection to address a pinched nerve. He sent me to an orthopedist who diagnosed and successfully treated tensynovitis in my right hand and wrist and to an ENT who refused to do a thorough evaluation and who sent me to the 1st neurologist. The neurologist diagnosed me with inflammation or infection. The pain doc prescribed narcotics for pain until things got figured out. My GP and rheumatologist did nothing because they were still adamant I needed an injection for a pinched nerve. I then went to the university hospital three hours away several times, had another CT scan w/wo contrast plus another ultrasound. Kept getting passed on to other docs there with no resolution in sight, ran out of money, went back to pain doc. Pain doc sent me back to the neurologist. Neurologist diagnosed me with dystonia at that time. The pain doc wanted to give me a trigger point injection in my SCM muscle which is very risky so I declined. My GP wanted me to get a botox injection. My rheumatolgist ignored all of it (I don't think he even heard me when I talked to him about any of it and it is now clear he has never read the material I gave him outlining symptoms, medical care received, etc.) So, that is why I'm so frustrated and broke!

Barb
 

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Dear Barb,

I want to say, I am so sorry your feeling so badly.:( Cervical Dystonia is so very painful.

I had that a few years back, and was hospitalized for pain. I was sedated for three days, until the worst of it passed.

I hope you find some relief soon. Keep on searching for a dr, that you trust and trusts you.

Best Wishes,
Love,
Sandy
 

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Discussion Starter #5
Sandy, anyone else who has had cervical dystonia or another diagnosis of an enlarged and swollen SCM muscle:

How was it diagnosed and treated?

Barb
 

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Barb,

I have c.n.s. lupus. I also was found to have cervical stenosis at the same time.

They just treated my pain and gave me benadryl and a botox injection. I really don't remember that. I only remember going to E.R. twice, in complete agony.

I feel for you. I must say..I was in such agony, they gave me the highest dose of pain meds..until my breathing was affected, and I was still in so much pain, it was unbearable. (and I am used to a lot of pain). They kept me knocked out for three days..until the worst past.

I hope you feel better soon Barb.
I will be thinking of you..

Love,
Sandy
 

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Hi Barb,

They can diagnose it by examination - a good neuro can at least.

It's classed as a symptom and the cause has to be found. If there's an easily identifiable cause i.e. nerve impingement then they will treat that cause which in many cases will correct or at least calm down the dystonia, which in turn relaxes the mastoid which will then go back to normal size eventually.

If not then they use things like muscle relaxers and botox injections in all cases regardless of cause.

My dystonia is generalised but also includes cervical dystonia. It's from NPSLE and I have seen improvement once they immunosuppressed me but it's still a problem so I take muscle relaxers and am on the waiting list for botox. I will (once I get accepted) be on botox injections periodically for the rest of my life provided they have a good effect and don't give me too many side effects.

love
Lily
 

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Hi Barb,

I am so sorry your in so much pain and dealing with so much right now.

It is imperative that you continue to search for a doctor who works with you and not against you.

It sounds to me like this guy your treating with is just not sensitive to what your dealing with.

I sure hope you find someone who can help you and some way to get rid of so much pain and discomfort that your dealing with.

Gentle hugs to you.:wink2:
 

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Discussion Starter #9
Sandy, Lily and Karol,

Thanks for your replies!

Sandy and Lily, did each of you experience the pulling, twisting and/or jerking of your head normally associated with cervical dystonia that would help with diagnosis?

The current neurologist doesn't think it's dystonia because, while the muscle is enlarged overall and swollen in one area, there's no pulling or jerking or twisting normally associated with dystonia and I still have normal range of motion more or less despite the muscle being constantly contracted and tight. That's why everyone is perplexed. And many, but not all, of the symptoms that accompanied it when it first developed are consistent with a flare and inflammation and not dystonia but no physician is willing to seriously consider that option except the 1st neurologist who later changed his opinion and diagnosis from inflammation and/or infection to dystonia. In my opinion, the pain doc has made the most accurate diagnosis and I think a trigger point injection might help but because the area needing injecting is the same area where major nerves and arteries are located, the injection could lead to a medical emergency, permanent disability or death so I have been reluctant to try it. Also, I do have lymph nodes and thyroid nodules in the area being watched for signs of cancer (still too small to biopsy) so I'm concerned about how an injection in the area would impact them.

Barb
 

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Hi Barb,

I had the pulling. I couldn't turn my head. It was pulling to the left, and very hard. I had no range of motion in my neck.

I am sorry, I can't be of more help. I did have some therapy after getting out of the hospital, but really, once the botox, and other meds kicked in..It went away. I still get a very stiff neck now and then, but nothing to the degree, I had before.

By the way..I was put on flexeril also.

Best wishes,
Sandy
 

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Discussion Starter #11
Sandy,

The information you have given has been very helpful. Thanks so much.

I have tried Skelaxin, Flexeril, and Baclofen. None of them relaxed the muscles, eased the pain or helped in any other way and I had very serious side effects from all of them within just a few days or weeks. I tried Cymbalta as well but experienced absolutely no benefit from it either.

Barb
 

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Yes me too, I look like I am doing a yes no nod all the time. It's pulling to the left and the mastoid on the right looks swollen because of the build up of muscle and my brain trying to correct the involuntary movement. I also used to get it in my arms and legs and trunk...........not nice. That's calmed down a lot since immunosuppressant treatment and it's mainly my neck that needs injecting. However if I flare badly it all surfaces again :eek: but thankfully calms down in a few days. I have mild overall tremor but I figure that's never going to go, it's probably from the damage already done during that flare.

MRI is the gold standard for diagnosing nerve impingement. A CT or other tests don't give enough detail. If that's what they have found then they would need to correct the nerve entrapment. I'm not sure how they do that but it's a Neurology issue not a pain management issue. The cause can be treated, which in turn corrects the effect.

Good luck and hope you can sort it out and get some relief.
 

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Discussion Starter #13
Lily,

I was told the area around the nerve is slightly inflamed so a cortisone injection into the inflamed tissue would relieve the inflammation and eliminate the nerve impingement. Surgery has never been discussed because the alledged impingement is barely visible. Also, my symptoms do not match symptoms from nerve impingement in my cervical spine at all so everyone tries to get me to agree that my symptoms are other than what they are so that my symptoms match their diagnosis instead of their diagnosis correctly matching up with my true symptoms. It's all so crazy, I'm considering ending all medical care and letting nature take its course.

Barb
 

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Hi

I find this site amazing as for twenty years I have had some really odd symptoms and to get to this site and find that others also have the same problems as I do.

Recently had MRI of cervical and neck because the pain is incredible and my neck also has limited movement. They have put me on diazepam to try and ease the muscles but no other medication has been issued. My usage of this is however small as I seem to be allergic to most medications they try and give. Too much of this collapses my legs.

A small amount of procyclidine eased the involuntary movements and muscle spasms.

Do you get hunching of the shoulders? went to a chiropractor to try and ease all the back and neck problems which does work but only for a limited time.

I hope you get something sorted, not had my results yet and the wait seems never ending. Some Neuro's are just not willing to look whilst others are and they seem to be very few and far between.

Wishing you the best.
 

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Discussion Starter #15
Hi Bessie,

Welcome to the site! It is an amazing and comforting resource. And thank you so much for your input.

No, I don't get hunching of the shoulders. My right shoulder rotates forward and down when I'm upright and is slightly elevated when I'm lying on my back or have my arms raised above my head so there is something going on with the shoulder (have had this problem for 20 years or more) but absolutely no one knows what is going on there either. I think there is a connection between the two problems given how the synovitis in my hand, wrist and arm developed while my shoulder was rotated forward and down for an extended period of time while I was working on the computer and how the pain spread from there up into my shoulder and neck rather than from my neck down my arm but absolutely no one will listen to me. When I talk about my symptoms, most physicians negate what I say and tell me something else happened like they were occupying my body or something and know more than I do about what I experienced ---- in my opinion, this kind of paternalism and arrogance is why it's so hard to be successfully diagnosed and treated in a timely manner and it's why medical care costs so much in the US. Seeing a doctor in the US is often the same as receiving no care at all but a **** of a lot more expensive! Brief rant, sorry ;)

Barb
 

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Hi Barb,

I didn't realize it at the time, but about 6 years before the cervical dystonia hit me. I had one side that froze up. It started in my shoulder, and became worse, to the point of not being able to move it. It moved gradually down the same side, and into my hip. I couldn't walk straight or pull up, or down my pants.

I realize now, being that it was the same side affected, that both problems were neurologically related.

I also, have a constant tremor, that worsens and gets better, just depending on what day or hour it is..I have type two diabetes, so I never know for sure what is causing the tremor, unless I test my blood sugar levels.

I was hospitalized for the pain, of the dystonia, but before being hospitalized on one of the occasions, of going to E.R, twice in a row..I was given 60mgs of Prednisone tablets to take each day. Apparently, the dystonia was so far gone, at that point, that the pred did no good...I was knocked out, and only remember what my husband told me, beyond the point of being hospitalized.

While I have cervical stenosis, I have had no other problems after being diagnosed with it. I also have a herniated lumbar spinal disc, and have no problems with it. Just have to be careful not to lift anything over 15 lbs.

I hope you get a good neuro Barb. While my regular g.p. and Rheumy were both aware I had lupus at the time my distonia bout occured, no link was established with my having c.n.s. lupus until an m.r.i with contrast was done..almost three years later. I was sure I was having brain involvement, but couldn't convince my dr's of it. I didn't get proper care until by a freak accident, a pea sized glial tumor was found on my hypothalymus. Which is a real shame, because..I have suffered far more with the lupus, than the tumor..If, their diagnosis is indeed correct.

I say, Barb, you know your own body, and if you think your brain is affected then you push on..don't quit. Eventually, you will find a dr, that both takes you seriously, and trusts you in the end.

Another issue that detracted from my being diagnosed much earlier was that I had a lot of psychiatric problems, which were probably the first symptoms of my brain being affected. I had been diagnosed with Fibro about the same time..so, once they tagged me with that label, I couldn't shake it. Not, until my bloods showed a sky high positive a.n.a. Which of course was very late in the stage of my lupus. By then, I had had psychosis, seizures, and two very painful bouts of dystonia..I started with Plaquenil, then added Cellcept, and am now on a daily dose of Pred, of 10mgs..Also, on top of too many other meds to even list here at the moment. I am saying, I may not have progressed to this point so fast or at all, had, I been treated correctly, in the first place. Of course there is no way of knowing one way or the other, but it is a thought that has occured to me, on more than one occasion.

I want to encourage you, not to give up your fight, for your health. Hang in there and on..until you find a good dr, that is willing to stay in your corner.

Best Wishes Always,
Sandy
 

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Hi,

I want to add, that the first bout I had with the dystonia, I was not on any drug for lupus.

The second bout, I was only taking Plaquenil, and other meds, for depression and sjogren's.

Hopefully, now that I am on the Cellcept also..I will not have another problem.

ox Sandy
 

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Discussion Starter #18
Hi Sandy,

There are a lot of similarities between your experience and mine. Thank you so much for sharing.

It made me sad and angry reading about your experience though. I hope things are going well for you now.

Hugs,
Barb
 

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Discussion Starter #19
An update:

Received a copy of my medical record from neurologist #2, including the radiologist's report concerning the MRI. The radiologist states "There is no nerve impingement."
 

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Hi Barb,

I'm assuming the Neuro looked over the scans himself? A Neuro looking over scans is worth a thousand times what a Radiologist says, many of us have had the experience that the Radiology report didn't mean a whole lot, the Neuro's interpretation taking all things into account was more accurate.

love
Lily
 
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