So many horrible symptoms over a month.

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I'm a 23 year old male. Bear with me on this.

About 40 days ago, I went to the doctors for a blood test.

Usually I'm fine with blood tests, they don't scare me at all, I've never fainted.

I had the blood test and then went upstairs to the doctor, my head went funny, i nearly fainted.

I saw the doctor, but didn't mention the lightheadeness,

she checked me over about a couple of longstanding issues, firstly a problem i've had with nails on my right hand, ridged, with a yellow line running through them. she also checked out my hip also right side, from looking at me, my flat feet, my general thin appearance, the stretch marks around my waist and on my left shoulder (my sister and a couple of cousins also have stretch marks in similar places), she suspected a mild case of marfan syndrome, which i'd never heard of . At the time i had the blood test i had just started a course of 50mg of sertraline, which i feel had been making me tired. I've also been suffering with really cold feet previously and a tightness in my throat, which gets worse after shaving, an uncomfotable feeling when swallowing, which had been attributed to anxiety. I also have had a sore on my leg, i badly banged it, for about 4 months, which isn't healing properly

About 5 years ago i had a weird six months of pain down my right side, a strange dripping feeling, weakness, i developed a small lump in my neck which is still there. This is when the nails on my right hand became weird and ridged and i also lost a lot of weight. they tested my thyroid function but nothing came up. i also at the time develop a weird ridge in my forehead in the skull itself, doctors have just said its normal.

There is a history of rheumatoid arthritis in my family on my mums side. My sister had juvenile idiopathic arthritis aged 6, she also had morphea/localised scleroderma. since the age of 14 she's had severe M.E, her morphea has also been coming back, she is for the most part bed bound.

Anyway, after i left the doctors i started getting pain in my chest and left arm, and a shooting pain in my calf, i was struggling to walk around. I got home and the pain got worse over the course of the day, that night i fainted (never have before) i felt awful incredily weak, a lot of pain down left side. paramedics came testing the usual things- everything came back normal, though i was a bit tachycardic. I was taken to a&e, they couldn't find anything, said the blood tests i had previously that day were fine, i was sent home.

The pain continued, I saw another paramedic a couple days later, she tested my bp, ecg, blood sugar, listened to my heart-everything fine.

A few days later i was feeling increasingly weak with pain and pressure in my chest, went to a&e, they said they'd find out what was wrong, everything came back fine, they said i was generally weak, but couldn't find anything. my gp came to see me, tested my strength, bp, she commented on my sensitivity and weakness, she also said that my white blood cell count was a bit low, she suspected it could be glandular fever.

I went privately to see a cardiologist, the first time i've ever been private, i was just so frightened by my symptoms. he checked everything, thought i didn't have any classic signs of marfans externally. I had an echocardiogram which showed my heart and ascending aorta to be normal. my blood pressure was different between my two arms 110/55-115-60.

My doctor saw me again, she said that my reflexes were very pronounced, that i was generally weak and my posture was a bit off.

She ordered some more blood tests, which may sound silly, but i've been reluctant to have as this all seemed to start after the initial blood test.

I've been having chest pain and tightness, pressure in my neck, pressure and pain in my back, upper left side, pain in my arm and leg on that side. horrible heartburn and some pain in my chest when swallowing. I've had throbbing, pulsing twitching all over my body, particularly in my calf where it went on for days, it was a visible twitching in the centre. i feel so weak and constantly tired. i went for a walk on christmas eve, which was a real struggle, i was so slow, i eventually picked up the pace a bit but my left leg was aching the whole time, when i got back there was a lump on my left thigh, amongst some small broken veins, i've had for quite a few years, they're hardly noticeable, the lump faded with rest, the place it was looked a bit red. a few day ago, i got an erection for the first time in awhile, the small veins became very prominent then when it became flacid, a small black lump appeared, my scrotum is also very tight, red and burning. Everytime i urinate, i feel like i've finished, but then some more comes out afterwards, it's like it gets stuck.

My eyes and ears have been affected. My vision is like bitty, like lots of floaters or static in my vision, i went to my optician, he said my eyes look fine, i've been short sighted since age 5, he said my eyes are slightly worse but thats it.

My ears- constant ringing, sometimes thunderous rumbling on left side. I've also been extremely sensitive to sound, like my inner ears feels like it shakes at any slightly raised noise.

I've been eating ok, though i have no real appetite, i am losing weight especially on my left side.

Everytime i walk especially upstairs or for a long time, i start getting shooting pain up my leg when i bend my left leg.

The little veins in my left hand have become prominent, very dark.

I've getting pain shooting up my neck on the left side.

I'm sorry about the ramble, i'm very worried and feeling worse everyday, i'm sleeping well though eratically, but feel exhausted. I've been debilitated the last month.

I have no idea what it could be: vascular? rheumatic? autoimmune?

my family history suggests autoimmune or rheumatic- my dads side have had varicose veins from a young age? Could it be some kind of connective tissue disorder? is there anything underlying that would mean a bad reaction to a blood test? vasculitis?

I'd just like some advice, what i should do.

I feel so unwell, i want to go back to a&e, though i think they'd just turn me away, i've never felt in my whole life, so unwell, i feel i should be in hospital.

 

I'm only posting here as my sister has ME, wasn't sure where else to post.

1 like, 12 replies

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12 Replies

  • Posted

    I should add I've been referred to a neurologist, thogh it's a waiting list.

    Also my GP who knows whats been going has gone unexpectedly on extended leave.

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  • Posted

    So sorry about all your symptoms. That's got to be really scary. I assume that in addition to the cardiologist, the doctor you've been to is a GP. Your symptoms don't immediately say to me, ME/CFS. But one thing you can do is to Google "symptoms ME/CFS" and see if they resonate with you. The most typical symptoms for this illness are the unrelenting fatigue, postexertional malaise (increased fatigue upon doing anything), sleep problems, cognitive problems. But there's a bunch more symptoms that are possible. If I had your symptoms, I'd see a rheumatologist. This specialist deals with both ME/CFS, and conditions like rheumatoid arthritis and other pain-related issues. I hope you get a diagnosis soon.
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    • Posted

      HI Jackie, thanks for your reply, I'd like to see a rheumatologist even for the fact that several different rheumatological conditions are in my family-scleroderma, raynauds, arthritis. Thanks for the advice, some symptoms seem to fit with ME, i have first hand experience of it through my sister, though would it too much of a coincidence for a sibling to have it also?
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    • Posted

      No, not a coincidence. Some research has indicated a genetic predisposition. I know someone who has it, as well as her aunt.
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  • Posted

    right now just lying here, my left leg is aching and twitching, my face on left side feels numb sad
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    • Posted

      Hi iceblinkluck.

      gosh, there's a lot going for you.  it sounds like a number of systems may well be involved.  as others have suggested, you definately need to be checked out by both a Neurologist  & a Rheumatologist. 

      your symptoms, whether that of  ME/CFS  overlap with a number of other conditions such as MS/PA (Pernicous anaemia)  especially your neurological  & cardiac symptoms.  however, you may  have related & concurrent  conditions going on that are treatable once a proper diagnosis is made.   

      as a means of eliminating some of these conditions, i'd suggest, to firstly  have  your b12 & Folate levels checked.   for this the GP usually starts with the standard b12 serum blood test.  however, this basic test in not always conclusive and false positive & false negatives are frequent. therefore, you may need to have other tests to confirm or disconfirm this afterwards, especially if your levels are below 500 pg/ml.

      PA  is an autoimmune immune condition.  PA & b12 deficiency can, & do have delieterous effects on all the systems especially the neurological/immune/cardiac etc.  systems. btw, b12 d  was my route to protracted infection & subsequently ME.

      a measuarable number of people are mis diagnosed as having MS & ME, when in fact they have PA/b12 d i.e. they recover when treated with b12.

      i'd suggest, if you can mutser the energy to get familar with  PA  & b12d. GP's, generally speaking, seem particularly uninformed in this area.  they tend  to treat the paper results rather than the presenting symptoms.

      good websites for this  include: the 1)PA website 3)the Dr Chandy site 3) HealthUnlocked in the PAS section.

      i do hope the Medics get to the bottom of this.

      C

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    • Posted

      Hi Caitlin,

      Thank you for your comprehensive post,

      I'm due to have another blood test today i think, would i be able to suggest to check out b12 levels to the doctor?

      I feel constantly thirsty at the moment could that have anything to do with this?

      The skin on my left hand has also become strangely thin, with little dark veins that have suddenly appeared, any ideas?

      I hope that I find out whats going, the not knowing is almost the worst thing.

       

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    • Posted

      Hi iceblinkluck.

      just picked up your message. so sorry that you are suffering so. and indeed, not knowing the cause can be as stressing  as the symptoms.

      hopefully the GP has checked your b12 & folate levels by now.  Folate is normally done when the Full blood Count (FBC) is completed. you'd have to ask re the b12. it also feels that you should have a full Auto Immune blood screen as well as having your blood sugar checked out. 

      hope you soon get answers.

      C

       

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  • Posted

    Very sorry to hear about your troubles, nothing is as difficult as many symtpoms and some dieases are very hard to diagnose.

    It does not sound like typical ME, but maybe some other thing. If you can affort it, I'd go to a good private doctor.

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  • Posted

    Hi there. Obviously you don`t have classic ME. But you do have some symptoms.

    The trouble is many diseases`s symptoms overlap. You need more investigation. It is possible to have more than one neulogical disease at the same time. Could well be in your case, but then you have a definite illness which is not ME. There are some indications of Lupus too. I am no doctor, and I do feel you need more tests. However, there is nothing to stop you checking your diet and making sure you have sufficient minerals such as Zinc, Magnesium, Omega oils, Alpha Lipoic Acid and Co enzyme Q10 as supplements. A lack of these can cause real problems. Also Read about ME. See if you find yourself . Hummingbird list many symptoms. It will not hurt you to check these out, especially if you suspect ME might be mixing up your overall diagnosis.

    Mean while, take care........Mitty

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  • Posted

    Hi there,

    I was diagnosed 3 years ago with ME and had many strange symptoms, although not the same as yours (most anyway). I'm not sure where you live (UK?) so I don't know how the medical system works there but I can tell you my experience here in Canada.

    I had an episode of paralysis on my left side and couldn't keep my eyes open and it was thought to have been a stroke at first. I had a couple more of these episodes while waiting to get an appointment with a stroke doctor (also a neurologist). While waiting I had a chance to notice all kinds of weird things going on and started writing them down.

    I went to several specialists, the hospital 7 times and each time started to talk about these odd symptoms. By this time I had had many blood tests, mri, cat scan and more. All results indicated I was fine.

    Here is what I learned to do...

    Find your local ME or ME/cfs association (google it) and see if they can tell you if there is a specialist in your area. (there is only one in my province so there aren't that many).

    Here, the wait was 18 months to get in so I pushed my doctor for a referral to a rheumatologist I could see in the mean time.

    I started isolating only the symptoms most concerning to me. My experience is that doctors start to glaze over when you start listing your symptoms. Sounds like one of yours would be pain!

    When I went to the Rheumatolgist I initially said "I don't even know where to begin. I have a lot of symptoms that concern me". He said he would start by asking me some questions first. And then I went over my list which I think I wittled down to maybe 5 from about 50! One way to do this is to take each pain symptom you have in various areas and just say pain all over. They'll ask you to elaborate (they should anyway).

    In my case he diagnosed me with cfs which I started researching to learn how to manage it while waiting to see the ME specialist who then diagnosed me with that.

    I agree with others here that it doesn't sound like ME. The diagnostic criteria for ME/cfs was developed in Canada and is what is used world-wide I believe. Take a look at it and see where you fall.

    I do know how frustrating it is to have so many symptoms. I once had a doctor who diagnosed me with "excessive introspection syndrome"!. Look it up. You won't find it because he made it up.

    Keep up the good fight! I always say we have to be our own advocates. And that's hard to do when you feel like crap so I wish you the best smile

    Tracey

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    • Posted

      Hi Tracey.  thank you for that. it reassuring to hear that both  ''the glaze over'' & it's ''all in your head'' syndromes are  not confined to the UK medical profession.  sadly, you're right in respect of being our own advocates.  the worst bit is, coz of our cognitive short comings, it's often difficult to expalin our symptoms never mind, stand up for ourseleves in the challenging medical setting. hope you're making progress.

      C  

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