Have the Doctors missed something?

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Sorry in advance for the long post.

My symptoms started on 14/02/16 - I woke with a really bad headache (this was unusual as I never get headaches), my arms also felt very weak and jittery. I carried on for a couple of days but the symptoms persisted. About a week passed before I went to my GP. I was referred for an urgent CT and MRI scan and cut a very long story short, was diagnosed with Hemiplegic Migraines.

My symptoms are still ongoing and changing. When I speak to my GP, i'm told "it's fine, it's just your migraines"

I now have:

Headache (mild)

Weakness (severe)

Pins & Needles (severe)

Breathlessness (mild)

Heartburn (severe)

Dizziness (mild)

Twitches (severe when @ rest)

Vision disturbance

Tremors (constant)

I am also struggling to do basic jobs i.e, write. My legs are very weak and a couple of times, have completely gone from under me.

I am hoping all of these symptoms are migraine related but I can't help thinking there is more to it. On googling symptoms, I am greeted with MS and MND. This is really worrying me and obviously, anxiety will exacerbate my symptoms.

I am really sorry if I am coming across as a hypocondriac but I am really worried and just looking for a bit of advice.

Many thanks

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10 Replies

  • Posted

    you should keep a record of your migrane. Your Gp may ref. you to neuro physiotherapy and drink plenty of water.
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  • Posted

    Ask Doc for more info as you are worried even if he tells you the same it is better than stressing yourself out.

    Good  luck and No Stress

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  • Posted

    Hey alym:

    First of all, I don't think that ANYONE should apologize for a long post on this forum, so not to worry. Also, you do NOT sound like a hypocondriac. The more info provided in a post,  the better the chances are that someone could advise or relate.  IMO, this goes beyond your GP.  I was incorrectly diagnosed with restless leg(RLS) by my GP for a very long time and never questioned it.....WRONG!  It took a visit to the ER after my legs were visibly pulsating right through my jeans that the doctor who treated me there diagnosed peripheral neuropathy and referred me to a neurologist. This is the route I would personally take given the symptoms you have outlined.  It's time to move on past your GP!!  My concern was also MS after googling for countless hours before being told that the disease could only be confirmed with an MRI which you said was already done. A neuro may suggest a nerve conduction study (EMG) to check for possible damage. After I had this done I was told that it was not in my head and that I did have damage. Now, many specialists and blood tests later, I am still seeking a cause. Obviously, anxiety has gone sky high and is causing a sleep disorder. I am wondering what you had done for labs?  After reading your post, my big question was whether you were tested for Lyme??!!  

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    • Posted

      Hundreds if blood tests done and yes, Lyne was one of them but negative. So the teitching can be peripheral neuropathy?? As soon as I google twitches, i'm told I have MND and will be dead in 5 years! MRI was totally clear and I need to keep reminding myself of this. waiting on another appt with my neurologist and think i'll ask for EMG. Thankyou

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    • Posted

      Yes, keep reminding yourself of the MRI or the added stress will put you over the edge. Googling "twitches" can take you down a dark path for sure. I'm on a cancellation list (due to 2 month wait) for appt w a larger neurological facility to get another opinion. I hope you return here w some answers....

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    • Posted

      Hi Jan

      I have a question for you. It's about my weird headache. It's been 8 or 9 years that I'm dealing with the left side pain. The pain is begin from the behind of my left shoulder and goes up to my left side of the neck, then to my upper left side of teeth, then into inner left ear, then to my left eye and eyebrow, the to my left side of the scalp. The pain is like burning, stabbing and itching. I have to grab on hold on my hair in the left side that I might get some pain relive. Sometimes the pain relives and then it goes down to my arm, hand and left leg. It's like electricity that goes up and down. I try to pressure on the point in my left shoulder and I can feel the pain that rediates from there everywhere to my left side.

      For example when press hard and tris to massage that point I can feel the pain in my left eye and in the left side of my face.

      This is scaring me beacuse I don't know if it's A Nerve pain or Vascular problem.

      Like you I've done many researching on line with the pain I have it showed Gaint Cell Arteries that is very serious problem.

      But only happens to elderly and it's rare in younger adult.

      Since I am 37 years old my GP was not agreeing to do the tests but I pushed him for blood tests that are for this condition. Which were inflametory blood tests. Such as C-Reseptive, ESR, ANA, Lupus and Ciliac decease. All came back normal but I still have this pain that keeps me worrying .

      Specially when it radiates to my eye it makes think what if I go blind.

      Do you have any idea that what it could be?

      Thank you

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    • Posted

      Hey Kate, 

      I am not in the medical field but IMO you were absolutely right to push your GP for inflammatory tests. When I pushed for lyme a number of years ago, it came back normal.  Months later I visited a naturopath w similiar symptoms that I have now and was told I had lyme.  When I returned to my GP, he discovered that the coinfection tests were not done and sure enough, it came back with erlichiosis(a lyme co-infection) I'm told this was not as bad as full lyme but to this day when I retest, it reads HIGH- PAST INFECTION which makes me feel uncomfortable. I am totally surprised that your GP did not refer you to a neurologist.  It has become very clear to me that we need to take personal responsibilty for our own bodies. I had my GP for many years and trusted his opinion, therefore, many months were wasted before I could change things. I am in no way casting blame because doctors are only human, however, I had to learn my lesson the hard way.  I don't know if you wish to take this avenue but I've had MANY issues resolved by a naturopath since the lyme issue.  I am being treated now by one for the nerve damage. They cannot write perscriptions but can order labs and are VERY much in tune with the human body.  This is something you might want to consider as you search for answers. 

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    • Posted

      Thank you for your respond Jan

      Actually I saw a nerologyist that was not helpful at all. Even when I took my brain MRI to him. I had an MRI mounth ago to see what's going on in my head. It came back kinds of abnormal. The radiologist noted several nonespecifc tiny lessions in both of my frontol lobs. He suggested different condition that might be cause of this abnormalities. Like

      vascular inflammation, infraction, demyelinating and not completely excluding Vasculities.

      But none of the doctors were alarmed by the findings. Both of them told me it says nonspesific and migraines can cause the headach as well.

      Beacuse I passed the nerologycal exam with the nerologyist so he told be there must be a coloration between the body symptomps and the images that he can diagnose.

      So I am left with many questions.

      I don't know how normal it is to have lessions in the brain and be worrying about it.

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    • Posted

      Kate, I always keep a copy of my own labs and reports.  Maybe you should get the report/MRI disc etc and bring it to another specialist for a second opinion. Some of these people are very brief and do not speak in a language that patients can fully understand. For this reason, I had to find ONE reliable GP that could spell things out in layman's terms and take the wheel to guide me.Prior to this, I was out in left field dealing w too many unanswered questions.  

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  • Posted

    You really don't worry or say that your a hypocondriac as that word/stigma is to some of us just an easy tag to people that don't suffer with pain / Neuro probs

    I believe you have something similar to me, touch the name on the reply and flick through my replies that relate to similar issues and you will see so do quite a lot of others

    Hope this helps, keep fighting the good fight and keep going on enjoying life to the best your issues let you have. Giving in can make it worse for you

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