Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Brain scan results and disappointment with neurologist

Mar 28, 2016 6:10 PM

I finally got my results from my MRI brain scan--and it seems that I am MS-free. Yay! :) The only thing abnormal on my scan was a temporal lobe cyst, which the neurologist seems to think is congenital and asymptomatic.

I was happy to hear those results, but my neurologist's approach seemed to have changed dramatically once i was cleared of the MS diagnosis. He had initially been very encouraging and positive about running more tests if the scan turned up negative results. Today, however, he threw Lyrica samples at me and prescribed flexeril. I'm not really keen on taking medications for a condition that a doctor thinks I "might have."

He also went on to say that I should just "roll with it" and that I should stop worrying so much about having a serious condition. >_< I felt very insulted and disappointed. I am in the middle of a flare-up today, so it was very difficult for me to get my wits about me and say what i wanted to say. I did manage to get a hormone blood test ordered, but my doctor mumbled something about "not knowing how to read women's hormones."

At this point, I feel pretty hopeless (and irritated). I plan on making an appointment with a rheumatologist very soon, and I also have 2 upcoming neurologist appointments (different doctors) to get second opinions.

On my list to do:
*blood work for hormones, vitamin deficiencies, Lupus, CRP for inflammation, autoimmune antibody test
*saliva test for metabolism/cortisol
*genetic mutation testing

Anyone have a similar experience? or further advice?

Mar 28, 2016 7:36 PM

I had 2 years of being blown off by docs and specialists. Don't give up. I saw an internist and he found all sorts of signs and symptoms of autoimmune disease the others told me didn't exist including swelling. If you can get into an internist. Have whomever you see look in your mouth. Inner lip, tongue, cheeks as well. I was told my tongue was normal by an ENT. The internist said it's anything but normal. I was told by 2 Rheumies no swelling. Internist found tons. Internist thinks strongly that I have Scleroderma, lupus, sjogrens. You can get a simple painless litmus test done by an opthalmologist as well to check for sjogrens. I will doing that too. Sorry you're going through this too.

Mar 28, 2016 10:13 PM

Thank you for the advice, Gibber. I don't plan on giving up, but I understand why so many do. How can I find an internist? I have an opthalmologist appointment fairly soon, so I will be sure to mention it to him.

Mar 28, 2016 10:24 PM

Okay, it seems you mean a general practitioner. My GP has been less helpful than any specialist I have seen. He has never taken my symptoms seriously, and I have had to force him to order additional tests on many occasions (including one time he didn't believe that I had broken my foot...it, indeed, was broken).

Mar 28, 2016 10:27 PM

You're welcome. I'm in Canada so I don't know how it works where you are but I got a referral from my GP. Great that you're seeing an opthalmologist.

Mar 28, 2016 10:31 PM

They were positive I had ms as well. Instead I have small fiber neuropathy that affects my entire body. I find that sometimes a doctor is embarrassed they were wrong and is quick to brush you off after that. I hope you find a doctor that is respectful.

Mar 28, 2016 10:32 PM

Oh boy that's not good. Can you fire him and find one that takes you seriously?

Mar 28, 2016 10:39 PM

Gibber, I really need to. I've been hesitant to change him because he still prescribes my anxiety/PTSD meds without giving me too much trouble.

@CDNgirl37: I don't know what his problem was. Even my husband was shocked at how quickly he changed his tune with this visit. *crossing fingers that I find someone more helpful soon*

As for the scripts he wrote, I don't think I'm going to fill them right now. The flexeril might prove helpful for my spasms, but I hate feeling groggy and out of it (I feel like that enough on my own). :( Why do doctors treat so many patients like guinea pigs rather than pursue definitive answers before treatment?

Mar 28, 2016 10:43 PM

I hear you. It's so hard. My doc after 2 years finally said to me " we don't know everything about this." I thanked him for finally saying that. It took finger turning blue in front him to wake him up. It's Raynaud's. Take pics of any visual symptoms you get too if you can.

Mar 29, 2016 12:15 AM

If I didn't have the GP that I do I would have given up a very long time ago. I went to an OB years ago with severe pelvic pain and she told me it was in my head and if I told myself it didn't hurt then it wouldn't hurt. I honestly think some doctors have a God complex and refuse to appear human. I think that's why we get some of the attitudes we do from doctors. We aren't the norm.

Mar 29, 2016 8:34 AM

Yeah it really sucks. The other one that tics me off is pain clinic telling you that you have a hyper active response to pain. In the next breath saying we're not always aware of all the pain we're in...grrr. We have a terrible pain clinic up here.

Mar 29, 2016 1:15 PM

Gibber, I haven't been to a pain clinic yet. I really want to know the root of my pain before I start treating it...but it can be so frustrating and difficult dealing with it while waiting for those answers. I'm also terrified to go to a clinic. I don't want to be labeled as a drug-seeker or be pushed into invasive therapies. I've heard so many horror stories here and elsewhere. :(

And after reading about all of the lawsuits against Pfizer for Lyrica, I will definitely not be filling this prescription. Ughhhh.

thank y'all for listening to my rambling!

Mar 29, 2016 6:23 PM

On a side note part of this: I would ask for a different muscle relaxer flexeril has been known to cause Afib. My husband at 34 was a victim of flexeril causing Afib. He has had his heart shocked 14 times in a few years and now has opted to leave his heart out of rhythm. It affects him everyday and if not for this he would be completely health.

Mar 29, 2016 6:41 PM

Flown, I'm wondering if your dr may have been having a bad day. It does happen. Since you have a relationship with this dr, would you be comfortable calling up for another appointment? You can explain that you didn't feel heard at the last visit, you'd prefer not to take those medications, and you would like the following tests to follow up. I know how difficult that can be, but since the dr was helpful before maybe it'd be best to see if the response was just him having a terrible day.

Mar 29, 2016 7:41 PM

I hear you. I think that's why I was less cooperative than I could have been at the pain clinic. They didn't know what they were treating so how did I know if they were only causing more damage. They have cookie cutter treatment. Everyone is treated the same. It's just not right. They didn't even let me know when I was discharged. I asked and 4 times they said they would call me back and let me know. They never did. It was mostly awful. The one good thing is the last nurse I saw there believed me and told me not to give up in finding an answer. She knew something more was wrong. It's because of her voice that I went back to my GP one more time, which led to the Raynaud's showing up and as a result finally getting into an internist who saw the illness right away.

Mar 30, 2016 6:11 PM

Flown, I was referred to Mayo clinic by a Neuro doc, after he'd done a test for MS (negative). He told me & hubby when I returned he'd see me to plan our next steps. After I returned he sent word by his nurse that Mayo's dx were the same as his, so he saw no reason to see me. The next time my PCP wanted a Neuro test I asked to be sent elsewhere. Hugs & prayers your future visits & docs will help you until you find the cause & treatment plans necessary! 🙂🙏💕🌼

Mar 30, 2016 6:56 PM

Thanks, shammagren, for the heads up on flexeril. I haven't filled it because I hate the way muscle relaxers make me feel. I already have tachycardia, so I don't want to do anything that would damage my heart!

dlwc58: I don't have a long-standing relationship with my neurologist. This was my second appointment with him. I'm also a little perturbed that I have not received a proper, thorough physical exam when I exhibit so many limiting symptoms. He has not even checked my gait or laid a finger on me. He could have been having a bad day, but he should show more interest in his patients. I'm not there begging for pain medicine. I'm there for answers.

Gibber: I'm glad you have gotten some answers! <3 The medical industry needs more compassionate employees!

Flappys: Thank you for the hugs and prayers! I will keep y'all updated.

Mar 31, 2016 3:07 PM

Atrial fibrillation was not caused by flexeril. They cardioverted your husband's heart rhythm not "shocked". I want to be extra extra clear about sharing information that is in regards to MEDICATION. STOP.....telling people that since you had or you know someone that had a particular and sometimes rare side effect occurance to not take a medication that a Medical Doctor prescribed. This is when you are playing Doctor and this type of advice can be life threatening. As an adult, I am kindly and a gently as I can , reminding everyone that discussing medications, side effects etc is normal and usually okay... It you don't want to get something filled because you don't like the experience you have had with it that is Fine. We are here to support encourage and inspire each other. It takes a long drawn out process to find the diagnosises and sometimes Medical Doctors will prescribe a medication because of the symptoms even though not entirely sure of a specific diagnosis, etc.I shall sit down now.

Mar 31, 2016 3:21 PM

WTF??? The doctor isn't sure how to read women's hormones? DEFINITELY time for a new neuro who CAN!!! You should not be denied medical care because of your gender, that's kinda illegal!
Please request either a transfer to a new neuro, or a new referral from your GYN, not your regular doc.

At least you know what it isn't, and that's great!

Mar 31, 2016 3:24 PM

Terri, I entirely understand your concern. :) I don't mind hearing anecdotal evidence of side effects, but I'm not the type to accept anything as FACT without lots of evidence. I make note of everything said, but I don't take anything heart. As a scientist, I try to put forth the effort to do my own research before taking action! I know this isn't the case for everyone, so I understand why you got fired up. Sorry if I gave a bad impression there. You all are awesome!!

Princess, I was baffled by his statement too. Also, it turns out that the blood test he ordered was only for TSH. He didn't even go through with my request for a full hormone panel...

Ready to start relieving your pain?

Join Community