After excessive MS symptoms, 1 MRI with lesions, & 4 non-neuro diagnoses of MS, the long awaited appt.with a neuro had her look at my MRI for 5 mins., walk in and, w/out ANY further tests, declare I don't have MS-it's JUST anxiety & depression.
I feel VERY dismissed. I had a full write up, (form c/o the MS Society) re: symptoms, time line, etc..., & was NOT PERMITTED to show it to neuro. I have a terrible memory & this was to help during the appt.
I also saw a different Dr.than I was supposed to, & was informed 3x to hurry it up because the neuro I was SUPPOSED to c was in a rush to get somewhere.
I'm still ill, still have a very low quality of life. Should I be as frustrated as I am, or should I accept a dx without any bloodwork, Tesla3 MRI, spinal tap, etc... Despite lesions & debilitating symptoms?
Oh dear. Please tell me she at least conducted a neurological examination. I think (though, I'd understand if you're gun-shy after that) I'd suggest a second-opinion. Your frustration is absolutely understandable.
A lot of people on the site have experience with having to kiss a few neuro frogs, so hopefully they'll be along to offer support and advice. In the mean time, I am so sorry you had such a negative experience.
Time to find a new neuro. Doctors that can't be bothered to listen to you aren't worth pursuing. They make their minds up in an instant and there is no swaying them. They end up making you feel worse than you did when you went in!
My first MS specialist was a nightmare. He kept me waiting for over 3 hours for my first appointment. He did it again at second appointment, which made it his last.
Second MS specialist is amazing. The first appointment also took over 3 hours, but we were in the same room the whole time :-)
Thanks for ur prompt response.
She did conduct a physical neuro exam, but when I couldn't do certain things to her satisfaction, she got somewhat angry with me, and said, "Come on, I know you can do this. Cut it out, go faster...". This made me nervous, which made me NOT "go faster".
I was also allowed to c the neuro I was supposed to c for the final 5 minutes, and she replied to my account of a recent eye exam (blurred vision) as a lie. For real.
I feel like puking.
My mind, as anyone's, means a lot to me. To be told I'm fine PRIOR to an exam, receive no follow-up tests, etc... Makes me scared that I'm undergoing MORE irreversible brain damage...
*She also said, FYI, something to the effect of MS having no cure anyhow, so even if I did have it, there's nothing they can do anyhow, so why bother pursuing a dx?
Thanks to you, too. I'm starting to feel better since I am not alone (However I'm disgusted that this is a bit too common).
I'm definitely trying to get in with a second neuro, but I need to get in with my Dr. first (which is taking til mid-April).
The thing is, I know there's something wrong. I'm not myself anymore. As humans, we tend to know our own bodies. I'm desperately advocating for myself here, but that, too, put me at a disadvantage, as apparently Drs. find it irksome if one is intelligent enough (and concerned enough about their downward spiral) to take the initiative to research a condition that the MRI radiologists, my original family dr., my new family dr.(I switched to expedite my neuro appt.), my Drs. head nurse, my pain management specialist, and two separate ER Drs. ALL FELT I LIKELY/DEFINITELY had.
I truly appreciate everyone's help and assistance... :):)<3xo
I am so sorry you were treated so badly, unfortunately this type of thing does happen and the only thing to do, is to try to get it behind you, prove the idea of anxiety/depression is WRONG!
Honestly, health anxiety is a lot more common than conversion disorder which is very rare but some psychological conditions are (legitimate) alternative medical explanation for neurological sx's. Psychological conditions can mimic, so mental health (imho) really should be investigated like 'every other' possible medical condition. [please note I am not saying you do have a mental health issues!]
Its actually quite common for people dx-ed with MS, or any chronic medical condition, to have had their mental health assessed at some stage. You now have anxiety/depression put on the top of your possible list by this neuro and it might be a good idea to get your mental health assessed (or reassessed) prior to getting a second opinion. You should consider being proactive and get it off your list with the evidence to prove it, if mental health does come up again.
I too understand the frustrations, my first neuro thought senile dementia to explain my cog/communication issues (I was 45!) and psychological to explain the physical, i was walking like a string puppet and falling over (lol) oddly he still told me i had a perfect brain with zero lesions. err that was so not true, the MRI showed a chronic no of white matter and deep white matter lesions inconsistent for my age. lol even the radiologists thought i had MS, asked lots of questions, how long i'd had MS, how it affected me etc so being told i had no lesions was totally confusing.
I saw another neuro well over a year later, he was focused on M/H as soon as he heard my 'mother' had bipolar, every question from that moment on was 'only' relating to mental health. It didn't matter what answer I or my husband gave, the psychological assessment, any of my dr's, my medical history etc, he was focused in on M/H from the moment I told him my mother had bipolar. My truth was not what he expected to hear and even when he started to see my truth with his own neuro tests, he just kept retesting and retesting trying to get a different result. Unfortunately my body would not cooperate and he ended putting me through the most unpleasant physical of my life.
He'd already had me fall twice but having my clonus and hyperreflex (left side only) tested over and over was like being repeatedly tazered, the nerves and muscles zinged and rippled up my leg exactly the same every single time, very horrible experience for me but he seemed frustrated when it still kept happening, 'none' of the distractions effect the outcome Lol even my body disproved it could be mental health! This neuro stated MS myths and he even said "visual issues had nothing to do with MS", (I have double vision and nystagmus both common to MS) he wanted to do more tests and see me again but there was no way I was EVER going to believe a word he said and i would never let this guy touch me, ever again!
With in a week of seeing the first one, i'd gotten my M/H fully assessed with a psychologist who specialises in gifted people and M/H for me was not at all possible! Cognitive testing showed a significant decline and the testing neuro contacted the psychologist to question if i was infact a gifted person. Big debate ensued, psychologist unyeilding "it's not psychological, it's neurological!" and the neurologist started speculating if it could possibly be a vascular issue.
So I saw a vascular specialist and had every vein, and artery in my entire body (from my feet to my ears) assessed via ultra sound and they found absolutely nothing wrong, my vascular system was perfect. I do have colour changing feet so vascular was possible, I'd taken pictures (lol) just in case it didn't show when i saw the specialist but they did and they had him confused. Coincidentally he was involved in a world wide MS study, he took my MRI's to assess and discuss with his (MS & vascular) colleagues and he got back to me with the opinion that my brain lesions were causing an auto dysfunction.
Despite everything, all alternative options have been investigated and excluded and lol I am still the 'same' happy go lucky person i've always been! My big bang happened in 09, my vision is double 24/7 and my mobility and communication issues are my new normal, nothing is going to stop this weird ride, so officially naming it isn't as important to me, as living a good life so for me (regardless of personal and medical opinions) making it official is staying on hold until i am ready.
So you have choices to make, do what is in your best interest and what you can live with!
Get a new Neurologist. I went through twelve until I was diagnosed. You have to have a Neurologist for the insurance companies to say it is MS. I had a few idiots as well. I had an idiot Oncologist as well. It is your life fight for it.
THANKS both to JJ, & Alex. I appreciate everyone's input, and I truly feel validated and strengthened.
JJ: I do have depression & anxiety since I was badly bullied @13 (I'm 39), however I'm on great meds, & underwent EMDR for PTSD = a 65-70% reduction in symptoms. 'Now' is the Best I've been, mentally.
What bothers me (also) is that having a label of depression on one's chart causes some Drs. to immediately attribute everything to those items.
Ie. I have a heart murmur. The 1st palpitations were during pregnancy. I went to the Dr.that day & was taken very seriously-Until Dep.&Anx. came up (Though I was calm Prior to palpitations). I later saw a Wonderful specialist who could hear my leaky valve with just a stethoscope. He himself told me that it's just easier for some Drs. to make assumptions. But a Good Dr. WILL NOT.
I will keep chugging along here, on the Rocky Road to dx (of at least Something that can be treated, in Some way!).
Thanks for everyone's help & support.
I will likely give updates (hopefully good ones involving caring & thorough doctors!)
I am sorry you have the Depression Diagnosis hanging over you. Many Doctors blame what they do not understand on mental illness. People with mental illness are not treated like Diabetics or Heart Patients and that is not right.
Before being diagnosed with MS I was misdiagnosed as Bipolar. I tried to get disability for Bipolar because I could not get it for MS but two Psychiatrist have said you are not mentally ill in anyway you have MS. But it is forever on my chart. An Oncologist thought I was Bipolar because of the old diagnosis. I explained it was a misdiagnosis. He ignored how sick I was during chemo thinking I was nuts. I almost died under his care because he ignored how sick I was. He never saw me after my first appointment before surgery. I ended up admitted to another hospital with my heart and kidneys shutting down after my third chemo. They had to give me fluids, potassium, magnesium and two units of whole blood.
Even if I had been Bipolar I should have not had my blood work and symptoms ignored. It is too easy for Doctors to judge. I went to the head of the hospital with my discharge report from the second hospital and nothing else. That Dr. got in a world of trouble. How do I know? The head of his department broke HIPPA and told my new Oncologist at the other Hospital who wrote the report I submitted. The new Oncologist is as scared as the Old one of a lawsuit so he treats me well. I never bad mouthed the first doctor to the second they all know each other in a small field. The head of the department at the first hospital did it for me.
I never bad mouth one Neurologist to another either. The Neurologist who diagnosed my MS looked at my notes from the other Neurologists and said "Who were these idiots and something about ethics charges". Doctors know when other Doctors are not doing their jobs. They know each other in MS. The main point is I move on until I get a Doctor who will help.
Wouldn't it be simply fantastic if having a mental health condition, (or having a family member with a mental health condition) did actually make people 'immune' to ever having any other medical condition!
There have been a few research studies looking for a connection with PTSD and Health Anxiety/Conversion Disorder, unfortunately from what i can work out, there is a strong assumption but there doesn't seem to be anything that really substantiates or verifies it as an absolute for all those dx with PTSD.
All I can think of that might help sort this out a bit, is to go back to your psych and discuss 'if' your mental health issues are the actually cause of your physical sx's or not. Is it even possible to be feeling emotionally healthier because of being focused on what has been physically happening? I'm not saying it is M/H or it isn't, its a possibility like any other and i really don't believe M/H shouldn't 'ever' get to the top of anyone's list of possibilities, until 'after' all other possible causations have been excluded and there isn't doubts!
You've mentioned visual issues and vertigo, have you had any specific testing to see if there is something to explain these issues?
Without the "anxiety" diagnosis, I just had the same experience with the specialist I was sent to by my regular neurologist.
If they collected copays afterwards I would have refused to pa.
I wwas asked to bring copies of all of my scans so I did. I was under the impression he was going torreview my MRIs with me. I was also told to expect my appointment to last 2 hours. What a joke.
I don't want MS. I hate spending money onall these aappointments and tests. Something is definitely wrong, especially with my eyes, but there are other symptoms too.
Last week, my daughter made me go to the ER because my vision got really bad, I had zaps in the right side base of my skull and my arm felt almost completely asleep. I didn't want to go, but it had been two days. They did MRIs of my brain and c spine. I was told to make sureI kept my appointment with the specialist and given Neurontin for bedtime.
I feel for you, I really do.
I follow up with my regular neurologist Wednesday and I'm going to ask him why he sent me there. He has been indicating that he thinks I have MS. If he doesn't know, I ccould have lived with him simply saying we would treat the symptoms and continue following me. I am going to tell him what a jerk that guy is and not to send anyone else there. I'm also going to go back to my Ophthalmologist to see if she can give any insight about my vision.
Apparently, if you are capable of walking and can fill out your own forms then there is nothing wrong with you.
I am an analyst for a living and came to my appointment well prepared. He wasn't interested in anything except Radiologist reports, which I didn't bring because like I said, I thought he was going to review the MRIs with me himself and explain his findings.
I am so sorry you, Amythyst, and others have had such crappy experiences.
I am also sorry for my rambling post, but I am just so mad right now.
I forgot to say thatwwhen I went to the ER I felt like there was a lump or something in my throat, andI ccouldn't feel hot or cold sensations when drinking coffee or water. My throat still feels this way, and while my arm feels better than it did, it still feels partially asleep, as does my right leg.
The ER neurologist did several tests and I did not do well, and my gait was way off. It still is.
So there you have it.
Again, I am sorry to ramble, just wanted you to know I understand.
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