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Patience is thin and Feeling out of my mind

I have been having a number of different symptoms for a couple years now. I didn't know what it could be and each time I brought it up to my doctor they would shrug it off and act like its nothing. I've been having chronic migraines on top of everything that also went undiagnosed longer than it should due to the same reason. I've seen multiple doctors in either the same office or different cities and I always got the same response.

My upper body and neck jerk, if I try to resist it... it hurts more. My speech is effected, I have problems swallowing liquids (mainly). I get double vision but its only at night when I'm tired, when it happens my eyes go cross and I can't uncross. When it gets real bad I can't control where my legs go when I walk and I feel like people think I'm drunk or something. I also can't seem to get my legs to stop moving.. especially if I'm standing (my doc just assumes its anxiety but it happens even when I'm not anxious).

Whenever my head does hurt its my eyes and its usually one more than the other but I've never experience temporary blindness for a long period of time before.

I feel like I'm on a roller coaster of anxiety, depression and a lack of energy. There's so much I want to do but feel like I just can't. Then my attention span is that of a child it seems as I can't seem to stay on one task. I've even had it effect my sex drive.

With my anxiety, I get a little paranoid and extremely uncomfortable around other people. The people I work with will see my twitches and I can't help but think they know something is wrong with me and majority of them are not nice about it either. I try to control it but its hard and sometimes overwhelming.

I've finally managed to see a neurologist regarding the situation. She's dead set on my symptoms being migraine related but its a completely different feeling all together. I've tried to explain it to her but she doesn't seem to understand or doesn't want to.

We've done MRI's of my brain and my entire back, they found spots in my brain but not consistent with anything they could diagnose and my back appeared normal (aside from the curve of my neck being reversed). It seems like she's giving up on the idea that something else could be wrong other than the migraines.

I don't have a hard time believing that I could suffer from migraines as I'm sure I did for most of my childhood and adult life but what I've been experiencing in the last couple of years does not feel like a migraine. My spouse sees what I'm going through and believes me but idk what to do to make them understand. I can't help but think there is something wrong! And I honestly don't believe that migraines are the reason.

I'm tired of seeing different doctors and being put through this over and over again. I don't know if I should give up my pursuit of an answer that makes sense to me or if I should give in to the diagnoses I've been given. I've had doctors call me a liar about the migraines for 10 years, I don't want to do the same thing about the possibility of having MS.

What gets me the most is that the doc told me its possible to have it and still test negative for it. I just don't know what to do and I'm at my wits end!
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Avatar universal
The doctors where the ones to originally suggest it due to the symptoms I was having. Based on what I've been told and what I've read so far it seems like it matches more than just the migraines. I don't know why but I don't think its just migraines. I've never heard of migraines doing all that, plus with the migraines... all I get is a headache. Half of my migraine symptoms went away when they had me stop taking an anti-seizure medication. Although the seizure medication helped with the spasms and my ability to get things done. Idk maybe its fibromyalgia... I started reading up on that one too and a lot of the symptoms are similar.
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987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome,

You don't specifically mention MS but your post has landed on the MS community forum.....

MS basically has many many mimics, migraine is actually one of them because it can mimic some of the neurological symptoms as those associated with MS. Unlike MS, migraine doesn't leave behind the more significant clinical signs of brain and or spinal cord damage, but migraine can be an additional secondary condition to their primary condition......  

Mental health issues can also mimic neurological symptoms as those associated with conditions like MS, and again unlike MS, mental health doesn't leave behind the more significant clinical signs of brain and or spinal cord damage, unless mental health is an addition secondary condition to their primary condition.....

Structural spinal conditions can also mimic, okay i'm sure you'll know the rest but the point that i'm trying to make, is that for a neurological condition like MS to be on your list of the potential causes of what you experience, you need to at least have some abnormal (neurological) clinical signs. If your neurological assessments over the years are normal, conditions like MS are an unlikely explanation, though that absolutely doesn't mean your issues are not real, just that it's more likely not being caused by something like MS!

Symptoms and clinical signs are not the same thing, symptoms can be caused by a multitude of different medical conditions, with MS the pattern can often be a big clue but a persons clinical signs are even more telling. Test evidence for MS eg MRI's are looking for brain and or spinal cord lesions but MS isn't the only condition that causes lesions, so their specific locations, size, if they light up with contrast, new lesion development, new locations etc etc are all important diagnostic information and more suggestive of the different conditions.

Both mental health and migraine are potential causes of micro vascular brain lesions, off the top of my head subcortical, periventricular are the common location for migraine and the frontal lobes are associated with some mental health conditions. Having brain lesions found on your MRI may actually be more suggestive of your migraine diagnosis......

If you read through all your test reports, they'll typically list every abnormal finding and will depending on the test, suggest possible explanations those specific findings are consistent with or more suggestive of. Reports are definitely not a diagnosis but they can sometimes help to understand where the doctor is basing his or her diagnosis on and sometimes they'll mention something that hasn't been looked at before.

If this is something that did begin around 10 years ago, it would be much more common in MS, for there to be quite a lot of consistent and or suggestive diagnostic evidence after that long a time frame......

Cheers............JJ

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667078 tn?1316000935
I know it is no fun if you worry what those at work think. Everyone wants to be validated and not think things are psychosomatic. Also we want answers and to be fixed.

Neurologists specialize. I went to one I did not know was a head ache specialist. All my tests showed MS and guess what she said they are migraines. You might want to find a MS Specialist if that is what you think it might be.

The double vision does not sound like MS. My double vision never goes away. You might have it for months and it goes away but it does not change during the day.

You may have several things I do not know. You might see a speech therapist for swallowing and speech.

Migraines can cause blindness and numbness on one side of the body and other neurological things. Symptoms come and go with the head aches. Sometimes you have symptoms with out pain.

MS symptoms do not come and go during the day. I am not sure if that is what is going on for you. The symptoms of MS are neurological not really muscular. I can't walk when I get up in the morning. I might be like that for weeks or months then it gets better.

The way our medical system is supposed to work is you have a GP that figures out kinda what is going on then sends you to the best specialist. Specialists only see there specialties unless you go to a wholistic doctor or integrative doctors. So you might have to go to a lot of doctors for a diagnosis.

Like I had cancer and it took four years to diagnose. I went to a heart specialist, a Gynecologist, an ER doctor, and Gastroentrologist, a pain specialist and my GP many times. all the time they rolled their eyes at me. The doctors felt terrible they missed it. My symptoms were classic as they looked at it in hind sight.

Also diagnosis most diseases do not have a definitive test for diagnosis. MS does not a lot of a MS diagnosis is excluding all other illnesses this can take years.I had my first neurological attack in 1965. Then my GP noticed I had neurological problems in 2007. It took two year 4 MRIs, an evoked potential test, an abnormal neuro opthamolgy exam, lost of blood work for a lot of diseases, and finally an abnormal Lumbar puncture.

You have to be your own advocate. If they say it is something have them explain why. If they say it isn't something ask what they think it is.

If a neurologist says they will see you in three to six months that is not a snub that is how they work. The often follow people over time. Plus neurologists will only work on one thing at a time. So if your chief complaint is headaches that is what they concentrate on.

Alex

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