Neurologist can't see my pyshicial problems?

[DexterMorgan]

First of all I hope this is in the right thread!

Few days ago I went to see a neuro assistant to get a check up before I received the Tysabri. They usually just ask about MS symptoms, any changes etc. Few weeks ago I had a relapse (that's what it felt like) and it still hasn't fully gone away. I can't do stairs without having shaky legs and my arm is very weak to the point I can't even hold a bottle of water to drink.

Anyway I told them this and they started researching my body and eventually they said that they couldn't see ANYTHING of my weaknesses and that they don't think it's a relapse and that I should not put everything on the MS.

I asked them what I should do than because even though they didn't see it, I have problems in my daily life because of it. So they go "we'll have to wait your MRI that is a month later and if it shows a new lesion than it's a relapse but otherwise we'll continue treatment with Tysabri".

I got mad because I don't care about the MRI or what it even says because I'm the one that has the physical issues! If it shows on the MRI or not!

Has anyone every had this occur that you felt like your arm or another body part was a lot weaker but the doctor just couldn't tell in his research?

The things I couldn't do was walk on my tip toes, heels and put my legs up in 90 degrees because my bad leg started shaking really bad. Yet, they didn't see ANY weakness in my body at all? This is SO strange!

[MSW1963]

DM, I posted a very long reply only to have an IP service interruption, grrrrr.

I complained for months to my MS doc about inability to stand up straight, and ability to only take very small steps. Eventualy the sx's became full time.

Ty infusion nurses refused treatment until I was evaluated by MS doc. Thankfully both are in the same major hospital and medical center.

From the infusion center I went to the MS doc for evaluation, then for emergency MRIs. I met with my ms doc following MRIs, and what I described as problems standing up straight, accompanied by ability to only make small steps he described as 'Stooped posture with shuffeled gait', official dx Gait Apraxia.

It took another 6 months with increased torso/trunk numbness before I remember to ask what causes Gait Apraxia. The response provided to me was with very minimal info, 'Frontal Lobe Lesions', followed by very obvious body language that indicated I was dismissed, 'see the appointment coordinator'.

I don't know if it's a technique to keep us in RRMS status and eligible for MDTs, or if it's transient sx's not presenting during clinical exams, or a combination of both. But I do understand how frustrating it is.

For my next MS OV I plan to wear socks, boots, sweater, jacket, run the car heater, and park as far away from doc's office as I can. I think that should be an eye opener of what my daily struggles are actually like, versus valet parking, walking a short distance to the office, plus the wait and recovery time while waiting to see the doc, walking 12 steps that far from perfect, but doesn't exactly cause an onset of sx's as walking 1/2 the way on a super market shopping trip, heat from cooking, heat in general, etc.

Also if anything new mobility sx wise happens, I'm using my smart phone to make a video for my MS doc.

Anyway, just want you to know you are not alone when it comes to reporting new sx's and have a very cheerful reply from doc that you are stable, no changes on clinical exam or MRIs. Like we are imagining stuff or are hyperchondriacs/?sp?

Good luck.

[J-Bo]

This has happened to me

Once I saw some written records from a neurologist who examined me, and it said that when he pushed down on my knee while I was supposed to try to lift my knee up, "there was no weakness, just a lack of effort on the part of the patient." In other words, I just wasn't trying hard enough (or faking?). Yeah, he never has to watch me lay my pants flat on the floor just to wriggle my right foot into the leg. Or have to lift my foot with my cane handle to get it in the car.

Where do we find these twits? How do they get through med school or even find their way to work every day? I know there must be some smart ones out there but they're not easy to find it seems.

[Thinkimjob]

OMG -he really wrote that? All down to "lack of effort" on your part. Unbelievable.
Doctors offices are generally quite small, and you usually have to wait for an hour or two before you're put on show, so you're well-rested.
Even I perform okay in a ten by twelve room.

[DexterMorgan]

DM, I posted a very long reply only to have an IP service interruption, grrrrr.

I complained for months to my MS doc about inability to stand up straight, and ability to only take very small steps. Eventualy the sx's became full time.

Ty infusion nurses refused treatment until I was evaluated by MS doc. Thankfully both are in the same major hospital and medical center.

From the infusion center I went to the MS doc for evaluation, then for emergency MRIs. I met with my ms doc following MRIs, and what I described as problems standing up straight, accompanied by ability to only make small steps he described as 'Stooped posture with shuffeled gait', official dx Gait Apraxia.

It took another 6 months with increased torso/trunk numbness before I remember to ask what causes Gait Apraxia. The response provided to me was with very minimal info, 'Frontal Lobe Lesions', followed by very obvious body language that indicated I was dismissed, 'see the appointment coordinator'.

I don't know if it's a technique to keep us in RRMS status and eligible for MDTs, or if it's transient sx's not presenting during clinical exams, or a combination of both. But I do understand how frustrating it is.

For my next MS OV I plan to wear socks, boots, sweater, jacket, run the car heater, and park as far away from doc's office as I can. I think that should be an eye opener of what my daily struggles are actually like, versus valet parking, walking a short distance to the office, plus the wait and recovery time while waiting to see the doc, walking 12 steps that far from perfect, but doesn't exactly cause an onset of sx's as walking 1/2 the way on a super market shopping trip, heat from cooking, heat in general, etc.

Also if anything new mobility sx wise happens, I'm using my smart phone to make a video for my MS doc.

Anyway, just want you to know you are not alone when it comes to reporting new sx's and have a very cheerful reply from doc that you are stable, no changes on clinical exam or MRIs. Like we are imagining stuff or are hyperchondriacs/?sp?

Good luck.

@J-Bo: I'm actually going to do the same thing, going to ask if I can read my medical file and see what exactly they write every time I get the clinical exam before the Ty infusion. Really curious!

And yes maybe it's to keep us in RRMS but if I had a relapse than something should be done about it instead of making us feel like a hypochondriac. I actually think it might be that because the doc said "we will keep you on Tysabri, there is no reason to stop", when I didn't mention anything about stopping with the Tysabri...

I wanted to ask if going to a physiotherapist might be a smart move but I didn't even bother because they were like "be happy it's not a relapse!". Yeah I'll be happy that my leg and arm isn't doing a damn thing because it's all in my head apparently, weirdos. That's literally how that doctor made me feel, I got out of the exam room and went to the toilet just to cry because I felt like they just had stepped on my heart and made me feel like I was mentally crazy or so.

And yes very good point, when I was there my symptoms weren't even that bad as my day was just starting so physically I was still "pretty" good even though I failed quite some tests. But I told them that my symptoms worsen when my day gets longer, more tiring etc and than they asked for examples of things I couldn't do so I said combing my hair, doing stairs etc. And than one of the doc goes "so you only get physical problems when you do these certain things for a longer time of period?" I got pissed and told her that combing my hair isn't exactly something I do for hours straight lol. But it was kind of like she was saying, ***** get over it, if your MS symptoms only occur when you are doing things for a longer time than there is nothing to cry about. So I got pissed and than the doc got pissed with "I'm here to note all your symptoms down, to exclude PML, do you understand that?". Yeah I understand that but some empathy and not-snobby behavior would be nice.

Anyways I'm really happy to read these messages and it's making me feel a bit better. I just find it bizarre as someone said that these doctors ignore our symptoms and down play them. We finally get a disease name to all the symptoms we have and than still they make us feel like we're hypochondriacs. It's really weird...

[MSW1963]

BTW DM, my torso/trunk weakness has progressed since the big attack at the infusion center, emergency MRIs to rule out PML about a year ago.

During my last OV in July with MS doc I expressed my concern about the weak torso/trunk progression and the added difficulty the weak torso/trunk was causing for ability to walk and mobility. MS doc proceedes to do the pin prick test down my spine which was normal, I had no loss of sensation based on that clinical exam.

When we did the post clinical exam follow up in his office, I remembered to ask what causes Gait Apraxia, to which he replied 'Frontal Lobe Lesions', something he's obviously known based on his dx of GA, a year ago during the big attack.

So I don't understand what the point of the pin prick test down my spine was, if 'Apraxia of Gait and trunk' are frontal lobe related.

I know my MS neuro is one of the gurus in the MS world, does an hour long clinical exam, is a gifted clinician and diagnostician. I do know he's probably a very different doc then he was 40-50yrs ago, pre MRI technology, when male MS neuros were the gods in medicine. I think there is possibly a bit of misogyny involved just based on his age and considering his early neuro education, but that's just speculation on my part.

He is kind and considerate, but there is something more than meets the eye going on that leaves me confused and challenges my confidence and trust in my doc.

[J-Bo]

I think there is possibly a bit of misogyny involved just based on his age and considering his early neuro education, but that's just speculation on my part.

That's a really interesting insight, MSW. I'm 58 and female, but even though I've lived through years of blatant sexism in the past, I still often forget that it could be that, because, well, aren't we past all of that yet? I know the answer to that is "no" but it's never my 1st thought.

[MSW1963]

OT, short rant

J-Bo, it wasn't until recently that women were considered suitable candidates for medical research, in a profession that until recently was exclusively male.

So much of what continues to be taught in medical school text books is based on studies and research that intentionally excluded women, because, well overies and stuff might invalidate the research, and the complication of possible pregnancy before completing the research.

I read an article in a medical journal about a month ago that pointed out even medical research lab rats are exclusively male, lol. So much for progress.

It has not been a topic of open discussion with many of my female MDs over the years, but there have been a couple who openly called *** on some of what they heard in lectures and remains in medical text books, info that's based on research that by design, excluded women. Other female MDs I've seen, out of professional courtesy, at best just a knowing glance.

It never occured to me pre MS dx that the humilation I sometimes experienced was not unlike the misogny and sexism I experienced professionally and in other aspects of life. I'm a bit naive, so it's not usually my 'go to' explanation either.

[Thinkimjob]

The other thing is that women make up the majority of MS patients (patience?). Maybe two-thirds? So you'd think a female lab rat might be useful.

No disrespect to my MS-ey brothers. Breast cancer research gets a lot more money and attention than prostate cancer, and the same numbers are affected.