Possible wrong diagnosis?

Posted , 8 users are following.

Hi again was diagnosed with VN with possible MAV  in March 2015 and have progressed very very slowly, Life was liveable but not always great as still woke up in mornings with what can only be described as a hangover feeling which subsided as the day went on.

Suffered frim what can be described as a feeling of a tight band running from my forhead across my head to the base of my neck but i just tried ti ignore it, however in the last few weeks i have stiff neck tingling nose and a head that feels totally full .........its like i have gone back 8 months and now im wondering if i have a problem in my neck as its always worse in the mornings any body else struggle in the mornings with this?

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  • Posted

    Hello Steve,

    As I have mentioned in the past, I do believe that my neck contributes to or even is the cause of my dizziness issues.  When my neck gets particularly tight, I experience tinnitus, and a terrible "spacey" feeling.  One of the doctors I've seen prescribed Valium to use at bedtime as a muscle relaxant.  I do think that helps somewhat.  Other nights, I'll try an Advil PM, but find waking up the next morning I feel groggy and "off."  As you mentioned, that feeling subsides as the day goes on.  Those muscles that run from the base of your skull around to the front of your neck can get really tight and painful.  The next time I see the neurologist, I am planning on asking him about trying Botox on those spots. 

    Try to remain as calm as you can through all this stuff, because getting uptight only tightens you up more.  Hope better days are ahead for you.

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  • Posted

    Hi Steve

    ​Wow - "hangover feeling and a tight band running from your forehead across your head, full head, tingling". Is it like wearing a hat? Except you're not?

    EXACTLY my symptoms since February this year plus a bit of leg and hand tingling. I was diagnosed with VN and did all the exercises, progressing slowly, then back two steps...and on it goes. I've had head and neck MRI's, cord compression MRI, bloods, neuro exams, Spine consultant, ENT and now endocrinologist ooking at bloods again and lyme disease and autoimmune diseases ...

    ​However , in my neck I have wear and tear and some disk compression/stenosis in the ferominal area, though spine guy says it wouldnt cause my symptoms. I also had "white matter" signal in the MRI that the neuro said was nothing as I passed the neuro physical.    

    ​I am sure my neck is involved somehow but I have to go with the MRI's and very experienced consultants. 

    ​I feel crap every day, with that hangover and headband....I'm sorry to hear your story but its interesting you describe pretty much the same thing....what else have they said to you? My bloods are ok aside slightly off on thyoid and b12 a bit low...

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    • Posted

      Hello Chris,

      I think we've spoken before.  Anyway, yes, I agree with the neck involvement, but also wanted to mention that the "white matter" you were informed of is common for people who experience migraine headaches.  I was told the same - areas of tiny white spots, that are in and off themselves harmless.  (?)  I have had the same tests as you, and been told pretty much the same things.  The hand/leg tingling is probably due to the stenosis - another issue that I have.  I do question the bloodflow being obstructed causing dizziness, and feel that a neurologist should be able to pinpoint that further?  Maybe someday this will all make sense - hope so.

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    • Posted

      Hi Nanci, yes I'm sorry I forget names on here! My neck MRI's had a patchy high T2 signal which the radiographer said was genuine though the neuro and another radiographer decided were "artefactual", ie not really there or irrelevent. Obviously Ms crops up but I have no other symptoms aside l'hermittes sign which is possibly a mechanical result of the wear and tear. I've thought of the blood flow issue but have had no real response when asking the question. I've never had migraines or any head issues but I guess its a wide term and applies to those that can start as a result of neck issues....ps the white matter was in the spinal cord at C3/4, my brain was clear. Feel ok today...just for a change!    
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    • Posted

      hi Chris i only had 1 appointment with nuero otologist then was sent for VRT ive had MRI at the start of this and was all clear and bloods came back wiv low vit D so on supplements now.

      my GP is pretty much useless i tell him what i thinks wrong as he aint interested.

      some days ive felt really good other not good but this last week has been real backward step its soul destroying.......i wouldnt care if there was light at the end of the tunnel but it all seems so bleak at the moment

       

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    • Posted

      yea im thinking the same about auto immune disease and sometimes symptoms can vary from mimute to minute quiet bizzare really!!

      All started with a room spinning attack of BPPV in Oct 2014 

      just amazes me there is no solution to this crap!!

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    • Posted

      Obviously there's no way I could really know, but my gut on most of us on this thread is that we are probably dealing with something similar, and I think that's more in line with what Manda described.  Auto immune issues aren't that likely, and Vit. D deficiencies are common if you live in low sun areas.  The common complaints seem to be the same - neck problems and dizziness.  Way too many of us spend long hours looking down at computers and cellphones - both damaging to your neck.  Finding the right chiropractor or Osteopath isn't easy.  I allowed one chiropractor to crack my neck 5 years ago, and was later found to have a tear in a disc during an MRI.  I had never been in any accident that could have caused that, so it was obvious what had happened.  Anyway, I appreciate the input from all of you that take the time to suggest solutions and wish everyone the best.
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    • Posted

      Dr Said wengers after a year of them guessing. I have had all kinds of crazy just out of blue all the time. Me cause I did one treatment he said I healed. Not. Stay tired can't breath joints swollen. Puffy spots weird stuff. But I guess I will let the wengers or whatever happens happen cause all those meds scare me more than wengers
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  • Posted

    Steve, I would suggest getting an x ray from a chiropractor. I am not suggesting you get adjustments done but you can do a consult where they take an x ray of your neck and give their diagnosis, you don't have to get work done on you unless you are comfortable with it. I've stated this on multiple threads but after almost a year of 6 specialists, countless tests and medications, a chiropractor discovered my problem and the kicker was that it showed up on the MRIs, etc but that's not what neurologists look for.

    I didn't have any dizziness before all of this started and then all of a sudden I had constant dizzy spells and migraines throughout the day, every day. It turns out that loss of curvature in my neck was causing my C1/Atlas to put a lot of pressure on my brain stem which in turn put a lot of pressure on my cerebellum which controls balance and motor skills. This was also causing a reduced flow to my occipital lobe which is where a majority of my migraines stemmed from.

    I'm not done with treatment which is a combination of medical massage, physical therapy and chiropractic adjustments (my understanding is you can fix some of it without the adjustments at all if you are not comfortable with a chiropractor, I consulted for almost a month before I let them adjust me and it's very important you choose a good one carefully) but I am taking zero medication now which was wreaking havoc on my system before.

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    • Posted

      Just read your response Manda, and think you have been given some good advice.  I really believe most all of  us are suffering from a "mechanical" issue, and not a chemical one.  Finding that chiropractor or Osteopath that can take care of this is the problem.  It all seems to be so common-sensical, but where are those practitioners?
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    • Posted

      Yes, prior to all of this I was being referred from one specialist to another. I found the chiropractor and the massage thereapist through following up on a gut instinct and truly trying everything. It was during a phone call that I got a good feeling about one of them and decided a free consult couldn't hurt. A doctor never would have sent me down that path. If you cannot find a chiropractor in your area then I would suggest x rays at the hospital but if you find a chiropractor then they usually know the medical massage places, etc. to refer you if you aren't comfortable with adjustments.
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    • Posted

      Hi yea ive asked my doctor for xray and he has agreed to this i hope they find something and a chiropractor can sort me out 

      its alway at its worse after i sleep the longer i sleep the more it flares up

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    • Posted

      Hi Manda

      are you now dizzy free or still having problems but much reduced?  I took think my neck may be the cause as i already know i have a neck problem and think it is possible that it could be causing restricted blood flow.

      Hope you get back to normal.  Best wishes Anne.

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    • Posted

      Hi Anne, I am not dizzy free but my symptoms are greatly reduced.

      Full disclosure I haven't even started the aggressive schedule of the treatment but let me explain so that hopefully you will still see hope in the fact that I am showing improvement.

      I got the final diagnosis on September 21st after several consultations and the x rays and was given the schedule. I took several more weeks to make a decision on if I was comfortable with the chiropractor adjusting me and to try a medical massage session and to talk to my work. It was decided that since October-December is our busiest time of the year, I would wait until the week after Christmas to do the 3 month treatment and also to save up money for it. In trying the medical massage therapy it was discovered that my condition was more severe and could take months (plural but no specific ETA) which my chiropractor later agreed with during a deeper exam.

      Since my condition was severe and I wasn't sure I could go through the busiest time of year without some relief from these daily symptoms, I decided to do one chiropractic adjustment a week and one massage therapy session a week to hopefully manage and slightly improve my condition through peak season. The hope was that when I started the aggressive treatment schedule the week of Christmas that I would get more benefit out of it because the foundation work had been done.

      On October 2nd I started doing both once a week. For the first 6 weeks I saw no changes in my symptoms and felt that my body was resisting the treatment by bouncing right back to where it was at my last appointment. Then on the 7th week I noticed that even though I still had the symptoms all day long, they weren't as severe. Then the following week, they were just as severe as ever but the symptoms seemed to be alternating days (keep in mind I had not had a migraine free day since July and I had not had a dizzy free day since the previous Christmas). Then on the 9th week I noticed that they were back to every day and about the same severity but the frequency was greatly reduced. I was only have 2 or 3 migraines a day and 2 dizzy spells in the afternoon.That was amazing as both symptoms had been constant throughout the day the entire time. Also, I noticed during the 8th week that my migraines used to be accompanied by auras that I didn't seem to have anymore.

      Now the weekend after the 9th appointment we went out of town visiting family and I spent large amounts of time that Friday,Saturday and Sunday cooped up in the car.This resulted in a frozen left shoulder and my neck being stiff and pulled to the left really bad. Since we had not started on the aggressive treatment plan to adjust my neck back to the curve yet, I was still succeptible to worsening my condition and my symptoms were bad for almost 2 weeks after that.

      However, I have had 2 more treatments since then and feel to be about the progress I was at between the 7th and 8th week which is a pretty good place to start the full treatment plan next week as I am so much better than I was in September.

      When I think about how hopeless I felt from last December through September as every test came back normal and the medications screwed up my body and my symptoms got worse and driving got scarier, I genuinely believe that the improvement I have been showing means that I will be in a much better place by March. The progress has been slow but at least I am not wasting time anymore.

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    • Posted

      Really good to hear that you feel you are making slow but sure progress.  Stay strong and you'll get there.  I have an abnormality in my neck and bulging neck disc which i was told by a rhematologist would cause me problems so suspect that is cause of a lot of my dizziness.  I must admit that i have also been much better on nortriptyline which is for silent migraines too, as i was getting visual disturbances.  My reluctance to have any manipulations on my neck is because it was a physio session that i believe started all my problems when she did back crunches on my spine.  I think that may have started all my problems. I am concerned that any further manipulations may leave me even worse off.   Keep us up to date on how you're getting on and all best wishes for a good recovery and Happy Christmassmile
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    • Posted

      Will do and thank you. I appreciate your relunctance. Perhaps depression therapy which is done gently by a machine and not by a person would be best. For me, I had to take my time and get a good feeling about my chiro before I let him touch me.
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