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Am i the only one? (warning graphic photo)

bevt2017bevt2017 Posts: 353Member Pioneering

I wasn't sure if I wanted to share this? but I really need some help, advice and support. scope have told me to remind you there is a graphic photo thanks.

In 2015 I started with hearing problems, I could hear buzzing noises and hear my heart beating. So I went to my doctors who told me I had fluid in both of my ears. (He was very surprised I wasn't in any pain) he gave me a prescription for a nasal spray, and told me to go back if I had any more problems.

Then in 2016 I was admitted to hospital, with serious infections to my left leg and hand. My doctors at the time told me, they looked like insect bites? that had got badly infected. On the third day in hospital, I could still hear the buzzing noises in my ears, but couldn't hear what people were saying anymore. After numerous hearing tests, MRIs, blood tests etc, I was told I was proufoundly deaf and I wouldn't be able to hear again.
They tried everything, hearing aids etc, and I even went to the cochlear implant hospital (no good).
More and more infections came, with no reason to why?

It wasn't long after my hearing went, I started having problems walking. My hands and feet felt cold and numb all the time, and I started having dizzy spells. So my doctor referred me for an emergency appointment with a nuerologist. Again after more tests, blood tests, lumbar puncture, evoke, electric impulse. and after numerous diagnosis Susac's syndrome, lymes disease etc.
He told me that the infection I had in my ears, had caused a lot of damage to the nerves in my brain, and there was nothing he could do to help. He also told me that I could have a very rare incurable disease called "Sweets syndrome". Everything matched perfectly, the hearing loss, infections, ataxia ect.

Again I had to go to hospital because of yet another infection to my right leg. the plastic surgeon who came to see me, told me that the infection looked like "Pyoderma Gangrenosum" He said he didn't want to take a biopsy, because if it was PG the infection would spread. So he instead referred me to a skin specialist, who could give me a definite answer. Again after blood tests, biopsy etc she told me, that I do have both SS and PG. I was so relieved I had been given a diagnosis.

About 2/3 weeks after my skin specialist gave me my diagnosis, I received a letter in the post. It said that there had been a meeting, and they had decided I didn't have the characteristics for SS or PG. And that they were going to leave me an open appointment, for when I have another infection. "I cant tell you how angry I was" people who I've never met, who don't have other hospital reports, who has only seen 1 infection come to that conclusion. Not only that but my skin specialist never even attended the meeting and now lives in Australia.
My nuerologist still agrees with me, that I still could possibly have SS. And on a recent blood test. it still shows that I do have "non specific vasculitis".  

I just have to live with the not knowing and try and deal with my disability's I have now. I wanted to ask if others have to deal with scarring and how they cope especially has summer is now here. I still feel to embarrassed to show my scars, and hide my body when I go out.  

This is just one of my infections.  



  • whistleswhistles Posts: 1,603Member Disability Gamechanger
    I have found that a natural tan disguises most things.
    You can buy concealers which is generally used for make up to tone in any scars if you want.
    I only ever show arms and legs regardless of skin anyway.

    It's a shame they actually haven't got to the bottom of what's going on. Keep nagging because they wouldn't want to be dealing with constant infections. 
    It's almost an ulcer?
    You probably would cover that with a pad if going out maybe to stop any dust or debris getting stuck it? 
    Do not follow me, I don't know where I am going.
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @whistles

    Thanks for the reply.

    Good idea about the make up, i never even thought to do that.
    The infection isn't that bad now just a lot of scaring. 

    The doctors at my surgery won't even touch me, I have to go to another surgery. They just give me anti biotics and pain meds (morphine) when it's bad. And say well you know what to do. 

    Thank you.
  • Jean_OTJean_OT Posts: 532Member Pioneering
    Hi @bevt2017 
    Sounds like you are really going through the medical mill. I'm curious to know if you have been referred to an Immunopathologist? 
    Best Wishes

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • TopkittenTopkitten Posts: 1,043Member Pioneering
    Living with not knowing is more and more common now. People ask me what I suffer and what caused it. My answer is always the same. I suffer a unique condition that doesn't exist and no one knows why, my spine has just worn out at double the normal rate. For 12 years I have hoped for a proper diagnosis but now believe I will never be given one.

    I am 61 but looking at my skin and shape I could be 51 but my spine is 101. I have had to accept not knowing and unfortunately, you may have to as well but I hope that someday you WILL know.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @Jean_Scope

    I know just wish Somone could give me an answer.

    I've never even heard of a immunopathologist? 
    My husband said it's deffenatly something we can discuss with my doctor.
    I've found there is a doctor near to wear i live, so fingers crossed.
    Thank you for your help.
    Bev xx
  • thespicemanthespiceman Posts: 6,012Community champion Disability Gamechanger
    Hello @bevt2017 Thank you for sharing your story.  Being with any condition that effects your well being and health is never easy to discuss openly and honestly.

    All I ever have had is mis diagnosis of my own disability and related health conditions.

    Found out twenty years ago and even now am not very comfortable talking about the incidents and pressures I have had. To find the truth has been difficult and very much upsetting.

    Yet I have to sometimes because all I know they may be others out there to hopefully inspire and support.

    All I know that to any body who has undiagnosed conditions to not let up find out and prove to yourself that you are of a need.

    A need to find out to share and to benefit from any support and any treatment.  If available.

    Please take care

    Your friend

  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @Topkitten

    Thanks for the reply!

    Im still new to disability, so I'm still trying to find my way.

    I've just been accepted on a group for SS, they are really lovely people, from all over the world.
    They have also given me loads of info about SS. They think I'm 1 in 4 people in the world to have my condition?
    So I'm like you unique 😀
    Wow! I hope they find a diagnosis for you too, sometimes I do get down with not knowing?
    Like you say I will just have to live with it.
    Thank you 
    Bev x
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @thespiceman

    Always lovely to hear from you my good friend.

    I was a little apprehensive has you know, but i found some awesome advice I can definatly work with.

    Thank you for your support and advice, means a lot.

    Talk to you soon 
    Bev xx
  • thespicemanthespiceman Posts: 6,012Community champion Disability Gamechanger
    Hello @bevt2017 That is OK thank you for sharing.  Understand being all  apprehensive.

    I am as a friend know that I can support you in your illness and endeavours and the long journey you have been on.

    No matter what the hills and troughs and the stones being cast in your way as you move on.

    Take care speak soon

    Always in prayers and thoughts

  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @thespiceman

    Thank you for everything!

    The SS group have found another article for me.
    Only one other person has my exact conditions (it's amazing).

    They also said that my doctors should be giving me meds to prevent infections, instead of giving me anti biotics when I do have them.
    I've sent the article to my doctor and neurologist, so fingers crossed.

    Thanks for letting me know about the group's, I'm made up 😀

    Talk to you soon
    Bev x
  • bevt2017bevt2017 Posts: 353Member Pioneering

    I feel so lost, angry and upset.
    It's been 2 years of agonising pain, infections and tests ect.
    And I'm still were I was 2 years ago.
    I scratched my foot about a week ago maybe 2?

    Which has caused yet another infection.

    The skin specialist who said they would leave me an open appointment. Only keeps it open for 6 months, and so my doctor had to refer me yet again.
    She forgot to do it on Monday, so only did the referral on tuesday.
    My infection and pain got so bad, I went to A+E.
    The senior doctor said she won't touch it, and gave me tremadol and more antibiotics. She also contacted the skin specialist to tell them I needed an urgent biopsy within 7 days. She said the medication I asked for, she wouldnt give me, because they need a deffinate diagnosis, because the medication could make me ill.
    It's now Sunday still no biopsy letter, phone call  "nothing".
    Tommorow my husband will have to start getting through to these people I need proper treatment.

    I do all the dressings myself, because doctors and nurses don't want to touch it.
    I'm taking about 45 tablets a day, my body must feel abused.
    I've managed to stop the infection spreading.
    But I'm feeling so down.

  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    Hiya Bevt2017, Wow, what an inspiration you are. I get a lot of comfort through scope and all the people on here. It helps me try to come to terms with my disabilities, knowing I'm not the only one. I am totally inspired by your strength and determination. I truly, truly hope you have all the help possible to get to the bottom of this. Many thanks for sharing.😀
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @Gwendoline1

    Thank you for your kind words.

    I've been with scope now for just over a year. And the the support I've been given as been amazing.

    I'm with 2 different other groups and they make me feel like I don't belong. 

    I always come back to scope, because it doesn't matter what my disability is I'm always welcome.

    Thank you 
    Bev x
  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    Bevt2017, You're welcome.😀
  • bevt2017bevt2017 Posts: 353Member Pioneering

    Well I'm absolutely disgusted and that upset I've been shaking and crying.

    My husband contacted the skin specialist today, to see if they had recieved the info for the urgent biopsy? And to see if they had an appointment for me?
    They told him they haven't recieved anything from my doctor or A+E about an urgent biopsy needed?.
    So with this, I told My husband to contact the surgery? The lady who deals with referrals was not in till 2pm.
    So we have been waiting all day, to get hold of this person.
    My husband has just phoned the doctors and her response was "The referal had been sat on the computer since Tuesday and no one has bothered to send it off".

    I'm so angry right now to say the least.
    My husband has had to go and pick my daughter up. But when he gets back, he needs to speak with a senior doctor and report it.
    If I have missed out on a diagnosis I'm going to be mortified.
  • Jean_OTJean_OT Posts: 532Member Pioneering
    I hear your frustration @bevt2017 . Sounds like the system has failed you. Here are links to a couple of organisations that can be helpful to people struggling to get the help they need from the NHS:
    Best Wishes

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @Jean_Scope

    Thanks for the info!
    It gets worse 😠

    Apparently my husband said it wasn't the doctors surgery, who left it on the computer. (Even though they didn't do the referral until 11th on Wednesday). It was the "referal managment service"? 

    Anyway! He contacted the surgery when he got back, told them what the "RMS" did. They said it was totally unacceptable and that she would inform my doctor and the senior doctor and let them know about it.

    So on tuesday 17th, he contacted my skin specialist again. They said he needed to speak to appointments, but that he would have phone "them" in about half an hour.
    When he managed to get through, they said there was still nothing showing on the computer and to ring back on Wednesday morning.

    Later on (I'm not sure if my husband called them or they called him)?
    But they told him an appointment had been booked "yyyeeehhh" (in October) WHAT??? By this time we was both fumming.

    So he contact my surgery again.
    He told them that we have had enough and they needed to get this sorted ASAP.
    They said they would get my doctor to sort it out on Wednesday morning and get back to us.
    We've heard nothing all day, so my husband decided he was going down instead. He's just come back and told me my doctor has written a letter to "RMS" for an urgent appointment.
    And that we do have 7 to 10 days 14 at a push, to get a good biopsy.
    Well it will be 2 weeks this Friday, so unless I have it on Friday (what's the point).
    We are now back were we started.

    Can I just say!
    I still have the letter from my skin specialist. That says there will be an open appointment for me, when I have another infection.
    I have had no correspondence with the hospital at all. Or a letter saying the open appointment will only be left open for 6 months. And that I would have to be refered again by my doctor.
    They messed my biopsy up last time, which means I can not receive any medication to prevent these infections. Nor can I get the support from other groups who also have SS and PG.
    I am deffenatly going to complain now.
    Thanks for your help
    Bev x
  • Jean_OTJean_OT Posts: 532Member Pioneering
    Good luck Bev, I really hope you are able to get this sorted out,

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @Jean_Scope

    Just an update!

    My husband contacted the skin specialist again, who said the appointment in October was for a consultation not a biopsy.
    So when he spoke with my surgery they said both doctors and the person who deals with the referals wasn't in today. He told them to have someone contact him, to find out what was going on?

    Today he recieved a call from my surgery. They said the appointment in october was only for a consultation. He told them that this was totally unacceptable, the doctor knew I needed an urgent biopsy. He told her that the referrals could do an emergency appointment if the doctor had requested it. She said she was unaware of that and contact them to find out.

    Yesturday I did a complaint to health watch and patients association. I've heard nothing back from health watch, but within seconds of me sending the email to patients association they sent me an email. They were really nice and helpful and said they would deal with my complaint urgently.

    Today I recieved an email from a lovely lady, who was contacted by the Patients association. 
    She said she was the patient experience manager from 2 of the hospitals I've been dealing with for my infections. She said she is going to investigate my complaint immediately and would contact me by email with an outcome?

    Anyway! Good news at last.
    My husband has just recieved a phone call from the skin specialst hospital. They have booked me an appointment at the hospital for this Monday. 😀😀😀
    I'm not sure if it's for a biopsy? Or who has finally sorted it out? I will let you know.
    But I'm made up. 😁

    Thank you so much for your help.
    Bev xx 🎉🎉
  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    Hi bevt2017, I truly hope this will be sorted out for you, fingers crossed for Monday! 😀 😀😀
  • Jean_OTJean_OT Posts: 532Member Pioneering
    Hi @bevt2017 

    So pleased that you have had some good news at last. Best wishes for Monday. Hope it all goes well for you.


    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @Gwendoline1

    Thank you and for your kind words of support ❤

    Bev x
  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    Hi Bevt2017,
    Your more than welcome. Good luck again! 😀😀😀
  • bevt2017bevt2017 Posts: 353Member Pioneering

    I wish I could give you all some good news, but unfortunately No. 

    I had my appointment today, with the skin specialist for my biopsy.
    But when my husband went to check me in, they told him that my appointment today was with the eye clinic not dermatology? (nothing wrong with my eyes).
    They told him there was an appointment with the skin specialist, but it was for next week (Not for a biopsy, but for a consultation).
    When my husband told them, that it was wrong, he was told to wait, why they investigated it.
    My husband then went to the eye clinic, to explain the mistake (not his job).
    They told him that it did show, that I had an appointment with them today, so they contacted the dermatology dept to confirm the mistake.
    When my husband went back to dermatology, they said that they have arranged for me to see a doctor for a consultation. When my husband explained to the doctor, that the appointment today was for a biopsy, the doctor told him he can’t do a biopsy, so we were made to wait in the waiting room again.
    Not long after, we was approached by a lady, who then escorted us into a room. She told my husband she was the appointments supervisor and basically blamed a new member of staff for the appointment error.
    She told my husband, before they can schedule a biopsy, I would need to have a consultation first (only then could they schedule a biopsy) so she left the room to find a doctor, who would do the consultation (again).
    The doctor then examined my foot and said they will now “FastTrack” the biopsy, the same as if I were a cancer patient.

    At around 4pm, my husband received a phone call from the Appointment supervisor. She told him that they have now booked me an appointment, for an emergency biopsy on Wednesday.
    Today has been such a nightmare, I feel so let down and upset.
    They have left it so long now, I'm not even sure if they can give me my diagnosis.

    All I can do now is wait :'(  
  • Jean_OTJean_OT Posts: 532Member Pioneering
    Hi @bevt2017 
    Just seen your post, what a disappointment for you. We all know that human error can occur but to get things so wrong with such an urgent appointment isn't acceptable. Anyway since today is now Wednesday I'm hoping that your biopsy has now happened or will be happening soon, and that it will give you the answers that you need.
    Best Wishes

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • susan48susan48 Posts: 2,227Member Disability Gamechanger
    @bevt2017 you’v been through so much heartache due to lack of care.

    I hope your biopsy goes as planned and your doing ok x
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @Jean_Scope and @susan48

    Thank you for your kind words of support.

    They have not done the biopsy 😢

    After the nurse went through the procedure. Injected my foot for numing and cut into it, she stopped.

    My husband and a doctor, was then brought into the room.

    After a conversation with my husband. He told me that both the nurse and doctor have decided not to proceed with the biopsy.
    They both have agreed, that it is to late for the biopsy as the infection is now (not viable).
    The doctor as also agreed with the A+E doctor. That they will not give me medication, until a biopsy is done.

    I didn't take the news very well and couldn't stop myself from crying.
    All the nurses were lovely, and agreed it should of been done sooner.
    They have made me "another" open appointment, for when I next have a flare up.

    I'm devastated to say the least
    Thank you
  • Jean_OTJean_OT Posts: 532Member Pioneering
    How awful for you. I hope your complaint via the patients association improves their systems and things run more smoothly in the future.

    Best Wishes

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    Hiya bevt2017, So sorry to hear that it’s not gone as you would have wanted. I can’t believe this as happened and totally understand that you’re devastated. It’s hard to stay positive at times, but try to. 😀
  • susan48susan48 Posts: 2,227Member Disability Gamechanger
    @bevt2017, I’m sorry to hear such awful news. 
    Maybe if this happens again ,got to a&e and tell them your not leaving until a biopsy has been done, you cannot keep going through this.

    Please Take care and sending hugs 
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Thank you all for your kind words of support 😊😊😊

    I recieved a letter on Saturday, which said.
    "Due to the nature of my complaint, the issues raised, are being dealt with under the formal complaints process".

    My complaint is now being thoroughly investigated by there (medical care group complaints team).
    So hopefully it doesn't happen again?

    I also have an appointment tomorrow with a new skin specialist. 🤞🤞

    I feel a bit more positive, I will eventually find out my diagnosis one day.

    A big thank you to @thespiceman
    For your support as always.

    Bev x
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Wishing you all the best, @bevt2017.
  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    Well done! Good luck 😀😀😀😀
  • susan48susan48 Posts: 2,227Member Disability Gamechanger
    Good luck tomorrow x
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Thank you guys so much for your support, it really means a lot. 

    You will not believe this! 

    My husband went to check me in this morning. Only to be told that someone has cancelled my appointment again.
    I've took a pic of my letter, because it sounds unbelievable.

    I should of had a consultation with a new doctor. As my other one is no longer at the hospital ( she's in Australia).
    I'm absolutely fumming.
    Ive Just emailed the complaints and the manager of the hospital.

    I'm giving up, the stress is to much.
    I just don't understand why they keep doing this.
    I'm not feeling very well, I feel sick with it all.
    Thank you again guys 
    Bev 😢
  • Jean_OTJean_OT Posts: 532Member Pioneering
    So sorry to hear this Bev, dreadful for you as an individual and also a very sad reflection of the state that the NHS is in.
    Best Wishes

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    edited July 2018
    Oh I'm so sorry to hear this @bevt2017- you must be devastated. Do you have supportive people around you today?
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @Jean_Scope
    I totally agree, it's so sad.
    Thank you.

    Hi @Pippa_Scope
    Yes I do, thank you.

    I've just recieved an email from the patient association. They have also emailed the manger at the hospital. She said she will email me back later, with some news.  
    She also said, she can't believe they've done it again. 

    Nothing more I can do now.
    Thank you
    Bev x
  • susan48susan48 Posts: 2,227Member Disability Gamechanger
    Aww @bevt2017 you must be devastated.

    I hope they do email you today with a reason for this. I’m not sure if you have or anyone has suggested calling, emailing your MP. This is utterly disgusting.

    Try and stay strong x
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @susan48

    You just couldn't make something like this up could you.
    I will give the patient association a bit more time before I get her involved. She's already sorted out my P.I.P ordeal. 

    I might let my doctors know what's been happening though? By there also in the firing line with the complaint.

    Thanks for the advice 
    I will update when I can?
    Thank you
    Bev x
  • susan48susan48 Posts: 2,227Member Disability Gamechanger
    Hi @bevt2017, yes I’d keep your doctor updated on this appalling situation your in.

    Fingers crossed you hear something sooner rather than later.

    Chin up x
  • Mumof2dsMumof2ds Posts: 148Member Pioneering
    I am new heew, gawd what a horrendous **** up from start to current. ImI so terribly sorry you have been messed about, every hospital visit, email, call, referral takes away the remaining energies we have. I have been fighting my corner since 18/2/17, and still no nearer myself, on 4 th ENT in September and a Neurologist, and under mental health counsellor, on anti depressants, on top of bilateral hearing loss, hearing aids, vertigo and balance issues. X 

    Good luck with this nightmare, I hope you get answers soon. X 

    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi guys

    Sorry! It's been a while since i last spoke with you all.

    I have recently recieved a few letters, from my doctors surgery and the hospital, Apologising for what as happened to me.

    I also sent my complaints letter, to my nuerologist.

    He as managed to get me an appointment, at another hospital to see a vasculities doctor 😀😀
    (Even though it's not his job)

    My first appointment was with a lovely nurse.
    I spent about 2 hours, talking to her about all my infections.

    I photo copied all my medical info, family history, hospital admins and photos ect.
    (She was very impressed)

    She also did a medical, took a urine sample and 7 viles of blood for about 24 tests. 😯

    I don't know the results yet?
    But I do have an appointment this Wednesday, with the vasculities doctor.

    I'm trying not to get my hopes up, but I can't help feeling a little excited.

    Hopefully they can give me some anwsers?
    Fingers and toes crossed  

    Thanks @Mumof2ds 😀
  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    Hi bevt2017,
    All the best to you, hope everything gets sorted out for you! Fingers crossed 🤞 too.😀😀😀😀
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @Gwendoline1

    Thank you 😀😀
  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    You are very welcome 🙏😀😀
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi guys 😀

    I just wanted to say a big "thank you" to everyone, for all your support, It's really ment a lot to me 💗

    As you know I went to see my vasculities doctor yesturday.
    She told me "yet again" that all my blood tests, came back normal.
    The only thing that as been constantly low or high is my CRP -inflammation and my B12 and vitamin D?.
    She also showed me my scan pictures, of my heart, kidneys, lungs ect.
    And said everything looked perfect?. 

    But something new did come up.

    She was asking me if any of my family had any kidney problems? I said not to my knowledge?
    She said because kidney problems, can also cause hearing problems.
    She said because my family's history with hearing problems. She's also going to check my son's records.
    (He's deaf in his right ear)
    Because males can be effected more than women and can all relate to kidney problems.

    Shes took more bloods and a urine test, to re check my B12 and vitamin D ect.
    So If it's still low she will start me of with vitamin D tablets and B12 injections.

    After disgusting my infections, she said she knows that it is my auto immune system that's causing them, but she doesn't know what's setting it off.

    She's also going to organise a meeting, for me to meet a women, who was similar to me.
    She's profoundly deaf with tinnitus, infections, eye and nerve problems.
    She said she's had an implant and some of her symptoms have either vanished or are much reduced including her tinnitus.
    (Shes also asked me to re think, about me having a cochlear implant)?

    She did say that if my skin specialist, cannot see me immediatly for a biopsy. My husband needs to contact her, and  a skin specialist will be made available, for an immediate biopsy 😂😂

    I also told her that I've recently been told, i have cataracts, due to medication.
    And that I now have an appointment for the operation.
    I told her I'm really scared about the Operatation, but more so about getting an infection and loosing my eyesight altogether.
    She told me she will also arrange for me, to see an eye specialist regarding my cataracts, before my appointment for my Operation. 😂😂 

    She also wants to check my nerves and I've agreed for her to electricute me. 😲😲

    She said my next appointment is with the ENT doctor and she would see me there.

    Even though I still haven't got my diagnosis, I'm positive that this doctor will do everything she can to help me.  

    I will let you all know what happens and what they find out.

    Thank you guys so much
    Bev xx
  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    Thanks for updating us, I truly hope all goes well for you 😀😀😀😀
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Really glad to hear there's been some progress, @bevt2017!
  • bevt2017bevt2017 Posts: 353Member Pioneering
  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    You are welcome, chin up and keep going that’s my philosophy in life !You are an inspiration to us all, you have and still are dealing with some uphill struggles with the medical professionals and you deal with it with dignity. 😀😀😀
  • synergy2120synergy2120 Posts: 20Member Courageous
    hi @bevt2017,

    Sounds like you have really been messed around! 
    I wanted to give you some advice on your first post about covering up scars etc...
    I suffer with Dermatillomania (i attack my own skin constantly) so i always have open sore wounds etc....Even though make up is good at covering some wounds it can make things worse etc
    My husband has severe skin issues and gets precribed these skin patches called Duoderm extra thin dressings...and because he cant use them i have been stealing them lol
    They are perfect for covering up skin wounds, they are skin coloured and the whole dressing is sticky so you can cut to any shape or size depending on the wound. It also promotes healing as it draws away all the moisture etc from the wound...
    Not sure if you can buy them over the counter but might be worth a go? x
  • bevt2017bevt2017 Posts: 353Member Pioneering
    Hi @Gwendoline1

    Awww! Thank you 😀

    I don't think I could of done it without you and the community. 💗

    Hi @synergy2120

    Thank you so much for sharing 😀

    I will deffnatly look into them.

    Bev 😀
  • Gwendoline1Gwendoline1 Posts: 225Member Pioneering
    Keep us updated! Good luck 😀😀😀
  • AimeeCheeksAimeeCheeks Posts: 4Member Listener
    Before I read your post I looked at your picture. I immediately thought, “that’s pyoderma!” I then read your post. Pyoderma is so tricky because it’s often secondary to other autoimmune disorders such as bowed disease and Ankylosing Spondylitis. An infectious disease specialist, dermatologist, wound care nurse and possibly a rheumatologist would need consulting to figure out what’s going on. Never accept the runaround! Use PALs if need be to get the treatment you deserve! I really hope you get sorted sooner rather than later. Good luck!
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