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Complex Symptoms strange

Hi I'm new here but I'm lost and wanting just to tell you little about things going off.

The Dr and neurologist are fobbing me off no help support I'm so alone I'm 29 I have my partner now as my full time carer and I hate it, I wrote down every symptom I felt and what happens and because there that many I really don't think they no what it is so they just FND you as its more of a safer option 💔

Symptoms

. Wide spread of chronic pain top to bottom of my body. But it hard to explain but I get different kinds of pain I.e ranging from stabbing especially in back and ribs, general pain but times 10, shock electric like I've been jabbed makes me jump, much more ...

. I got diagnosed with chronic pain syndrome on top of vertigo and that in general wipes me off my feet can't have anything touching my head neck area the world around spinning feel sick having headaches.

. This comes under pain but I class it different in a way,
I have episodes were from my coxet bone to my neck bone it like I get it to the floor drops me pain and spasms mainly in bum area then it like a rocket shooting off up your spine to your neck bone then I burn. It seems to get more often. I also loose feelings in my lower legs for around 5 min then pins and needles I also loose sort of my feet coordination off balance aswell. Weak and tiered have to go bed.

. My whole body feels like it on fire like someone have put petrol inside my viens and ignited it I have pictures and videos that the burning sensation isn't to me a sensation as its coming through my skin. They have gave me some cool cream but even that now isn't really touch anything anymore, it's hurt so bad and sometime painful but it's like I'm watching my self like that and can't stop it. My skin goes from white to red or red to white then sometimes marks me with a blister.
You can also see on the videos and obviously myself and partner that it burns through n burns my hairs they go black. WWHATTTT!!

. I get a crawling sensation in my whole body mainly my face but everywhere, it like having 10000 mini insects inside you crawling in like my mouth making it sore tongue ,lips up my nose , in my eye lashes and eye brows mainly they are but that feeling were u feel that sensation and nothing helps it that's bad sometimes I have to slice my own body to stop it been to intense now how that right?
THE crawling in my mouth area makes me and leaves me with a horrible taste it crawls my whole tongue roof of mouth it is literally like a feather hate it.

. The pigment in My face especially has now nearly gone I don't feel me any more , I got parts in my hand, feet to

. I can't season my food as hurts my mouth can't also have fizzy drinks also hurts my mouth this sounds crazy.

. Swallowing is now taking its toll, I'm finding harder and harder to Swallow especially meat, I find it difficult with a lot of food so I stick to food that's easy going down.

. Sexual situation I'm transgender turning into a male but my feeling of my private area has nearly gone were I can orgasm I feel so embarrassed especially with my partner but she gets me.

. Pride that's a big thing for me ... I have lost all self of pride nearly I have to be naked for one most of the time I less I have to go out as the clothes touching my skin is to sensitive and irritates. My confidence with my skin .

. Temperature is also a massive thing it has to set right the temperature in my flat to make sure I don't burn or it to cold or it set all the symptoms off. Even the shower temperature intolerance has to right going outside the weather I can't be hit by the sun as it burns me but then I can't or I have to wrap up when it cold so I feel house bound most of the time.

. Fatigue is starting to kick me ass feel more weak in my muscles and tiered were its stopping me getting out of bed or daily task can't stand on my legs to long, my grip of my hands are going my joints are stiffening up I'm in bed 4 to 5 days now out week what a life NOT.

. I GET OTHER SYMPTOMS LIKE....

. Wetness drips on my legs
. Discolouration of skin
. Muscles weakened
. Fuzzy sensation like your TV lost signal and it fuzzys.
. Struggling to settle sleeping
. Feel my brain on fire at times

I am 29 year old and feel a cripple in my self , I went from very active playing semi professional football to on day well half a day my whole life got turned upside down. I'm half the person I was and I can't seem to accept it I don't want to.
I no it looks a lot but there more in a way I've dealt with this whatever they think for 2 years and it just got worse and is worsening. I feel no-one believes me so I'm that paranoid I take pics of everything I'd done a book to show my neurologist as I'm at last straw I've been on my knees begging for help to crying for help to angry I'm getting to the point I'm done. No professional want to help as it to complete that's what I keep getting.

  1. My heart goes out to you, . That is a lot to contend with, especially when you are in the midst of transition. Unfortunately, you really have to advocate for yourself when you are suffering from neurological symptoms because some doctors will brush them off as psychological or psychiatric. Did the neurologist ever order any MRIs of your brain or spine? Have you considered getting a second opinion, preferably from an MS specialist? The National MS Society has a tool that can help you find one in your area. Here is a link: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources. I hope this helps and that you get answers and relief. I am glad your partner is so supportive. You really need that right now. Please know we are here for you whenever you need us. Gentle hugs. - Lori (Team Member)

    1. thank you so much sorry not been on I'm just getting fnd brushed off deal with it I feel it now getting bed bound with my legs n live or die like a gamble 50 50
      Yes my neurologist when I get my letter back from what she's wrote after the meeting has lied on the three times I've been and told me that fnd me because I'm too complex for her to understand what it is I never asked for a second opinion on MS but that's what she wrote it was her idea I'm tired of it I'm 29 and can't do nothing so have tomorrow a meeting with a new neurologist and Ms specialist for a second opinion but just bothers me in a way that my new neurologist is the co sign to my old one so thank you for your comments

    2. I wish I could give you the biggest, most gentle hug right now . Mirroring what Lori said, I'm so glad that you have such a supportive partner. You're working through a lot right now, and having someone to help shoulder that is really helpful. I'm keeping my fingers crossed for you that your appointment with this new neuro goes well. I will be sending it out to the universe that this person listens to you, takes their time and most importantly, leaves you feeling seen and validated, which is 100% what you deserve. If you're feeling up to it, no pressure at all, pop by here and let us know how it went, ok? I'll be thinking of you and sending lots of good vibes and good energy your way today, ok? 🧡 Kayleigh, MultipleSclerosis.net team

  2. iv message u on private message x

    1. I saw it took me too long I haven't been on answer to your question to the new neurologist as a second opinion went shocking and left me feeling again pushed aside watch the point deal with it there's no wrong with you it's in your head fnd there you go.


      They just said they couldn't do anything more for me that's literally what me and my partner left with I'm too complex and have no idea what it is I have read a lot of articles on MS now I'm not stating it is or it isn't but what stated on Ms is me trying to get that towards them is that talking to a thick person not a qualified professional I might as well have took their job and done it better myself so now left with nothing they've told me to go private to London but I think in my self am I just going to get her again from another professional as I don't like as I like experience from my previous past of mental health it took me 22 years to do that my partner stuck by me for nine years to get me two and a half years ago when all this started that strong headed I got snap finally strange I'm studying psychology at an Open University but I have to do it at home due to my health which not happy with I still go with my ADHD which doesn't help my symptoms if I could list my symptoms to you you'll be listing them for weeks which is why they say basically go away but thank you for the message you can private message and thank you for your kind support house things with you?

      1. , I am so very sorry. I have some pretty unfriendly thoughts on medical professionals giving up on people, but I'll keep them to myself. I hope you are able to keep pursuing answers, although I know that may not be easy. I don't think anyone should have to work so hard to get good healthcare 🙁


        Please know we're thinking of you. I know I'm not Kayleigh or Lori, but I will keep you in my thoughts and I hope you find a doctor who will LISTEN and HELP you!


        Best, Erin, MultipleSclerosis.net Team Member.

    2. I echo what Erin, Kayleigh, and Lori wrote. I will add that my British MS friend who lives in the west of England never could get her neurologist to diagnose anything except transverse myelitis. My friend is a nurse, so she is well-informed about MS and certain that she has it. But she was never treated and is still without a diagnosis 20 years later. Her neuro criticized her for doing research and convincing herself she has MS. It's been a stalemate for years!

      Regarding going private, she mentioned the same situation you have and hasn't gone that route. Like you, she was certain she'd wind up with the same doctor after all. She said doctors are assigned because you are in their region, but not at all based on their expertise about your particular medical conditions. So the sad, frustrating takeaway is that if you're stuck with an ignorant or incompetent doctor, you might not ever get the care you need.

      I feel for you, Kingsy wilson, and wish you the best. Kim, moderator

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