Scars now 2

[Buckley123]

What do you think c

[PMRpro]

I think you have got a doctor who is determined to get to the bottom of your illness - that is what you wanted wasn't it?

[Buckley123 in reply to PMRpro]

Yes it all just seems real now zz

[PMRpro in reply to Buckley123]

And am I right in thinking you can go NHS???????

He's listed everything he has seen/found - and they are all clues. As Lisalou says - once you know what it is, you can do something to help.

[Buckley123 in reply to PMRpro]

Thanks I hope so and yes via the nhs finally xx

[PMRpro in reply to Buckley123]

Just think where that other money can be spent now? Making life better for you xxxx

[Lisalou19]

Absolutely nothing to be scared off at all. Your in the right hands and if he thought it was urgent then that would have been stressed .

I can’t believe how quick you got his letter.

He doesn’t appear to suspect a specific illness as such but once you have your full anti body screening you should have a clearer picture xx

[Buckley123 in reply to Lisalou19]

Myotis tho ? And neck is weak shoulder and hips I didn’t know this 😣😣😣

[Lisalou19 in reply to Buckley123]

They suspect I have Mysiotis. Nothing to fear, the medication will kick it into touch and it can also be secondary.

I have very weak legs , trouble swollowing and breathlessness that is worsened when other symptoms are heightened. X

[Buckley123 in reply to Lisalou19]

Thanks Lisa I really don’t know what I would do with out you xxx

[Lisalou19 in reply to Buckley123]

Hey what would we do without D Cruz 😊

And ditto I couldn’t get through it without you all here.

I have suggested another useresssge you about your 2 different outcomes at London Bridge xx

[Buckley123 in reply to Lisalou19]

Yes I have a message I’ve replied I really don’t believe doc kaul is the same a Cruz massive difference in my opinion xx

[Lisalou19 in reply to Buckley123]

God knows what a useressage is 🤣.

I know it cost you more money to go back to him but was clearly worth it.

What I like about the guys Rhumatology department is they listen to your symptoms and take action.

Ie me keep basically peeing myself was listened too and referral done. None of this nonsense see how it is in 3 months or an out right NO it’s not linked.

X

[Buckley123 in reply to Lisalou19]

❤️❤️❤️

[Buckley123]

Thanks Lou you know when it’s just there in black and white and now it’s real and if you read on google it doesn’t sound good at all an after watching my mum die well I’m shitting myself

Xxx

[PMRpro in reply to Buckley123]

DON'T read google!!!! It is always worst case scenario. It might be - but most of the time it isn't!

[Buckley123 in reply to PMRpro]

Thanks mate xx

[Buckley123]

Thanks Louise I think without this site I would be going mad in fact I don’t think I would cope I’m so frightened xx

[Buckley123]

Thanks Louise I really appreciate it a lot means the world honestly xxx

[Buckley123]

Thanks I know really but when panic

Sets in you just believe what people tell you xx

[Buckley123]

This is very true and you I hope you have a lovely weekend and thanks again for your support xxx

[Buckley123]

❤️

[jane1964]

I am really pleased for you that your consultation went so well.Hopefully now once you get treatment you will feel better.I felt awful by the time I got my diagnosis from the fifth rheumatologist and now I am so much better I wouldn't have thought it possible.jane.

[Buckley123 in reply to jane1964]

That’s encouraging thanks Jane xxx

[Roarah]

Slow down and breath. You do not have a diagnosis of Mysiotis yet he just wants to include it in the antibody panel. Relax for now for worry will not fix tomorrow it will only ruin today.

The stats for me being alive in 8 years time are less than 50 percent. I spent so much time worry about this number I pretty much stopped living my life from November until February. I only focused on the fact that about fifty percent of people who had a stroke before fifty died with in 8 years. It never crossed my mind that I could be one of the almost fifty percent to live past eight years. It never occurred to me that many young people with cancers have strokes and the number of deaths may be mostly in that subgroup of patients. It never occurred to me that od's cause stroke. It never occurred to me many people can not afford good health care so maybe do not take their meds. It never occurred to me that constantly focusing on my expiration date was a fate worse than death for it was robbing my life today.

Once I stopped to realize these things and started to address my fears of death and health anxiety, with therapy, I have been reborn so speak. None of us have guaranties. We all are terminal. The only thing for sure is this moment. If you can start focusing more on the moment and less on the future, life becomes less scary. I may not beat my survival odds but I absolutely refuse to let the worry of that possibility rob me of any of this life I still have left. Take it one moment at a time.

You may find you do have a very scary illness or maybe you do not. But you are presently breathing and living and not there right now. So find a simple pleasure right here and now and focus your energy on that for the time being. Deal with your diagnosis when you have a diagnosis and all of the information.

You've got this! Xo

[Buckley123 in reply to Roarah]

Thanks so much and I know your right I just don’t want to be in the same position as my mum was I don’t want my kids to see me like that I feel like I have a massive weight on my shoulders and the clock is ticking I know that sounds dramatic but it’s true xx ps thanks for your kind words xx

[KayHimm in reply to Buckley123]

So far, the neurologists who make the diagnosis of your mother’s illness have said you do not have MS. I think it is important to separate your possible illness from your mother’s less treatable one.

[Buckley123 in reply to KayHimm]

Do you not think because my brain is scared and my muscles are weakening that I will be the same xxx

[KayHimm in reply to Buckley123]

I am not a doctor. But I do have antibodies that are known to cause neurological symptoms. My brain MRI is abnormal but, despite my « weird head, » most of the time I walk and talk and have a good time. My impression is that MS is usually progressive and the treatment is not as effective as for many of the autoimmune diseases that affect the brain and nerves. You should ask your neurologist about the MRI. They can tell you what they think the spots are and how severe they are. I think you will feel better.

There is a lot they can do to help you. Try not to compare what they think you may have to your mother’s illness.

We all feel for you. So hard to have to go through this after losing your mother.

K

[MEGS53 in reply to Buckley123]

Hi Buckley. I really feel for you and totally understand your anxiety. I have had 2 brain MRIs which showed many 'white high intensity spots' (ie damage). My Drs told me the MRI showed that the damage was in the neuronal cell bodies and not the myelin sheath (which is one of the hallmarks of MS). I also have proximal muscle weakness. I've read that AI disorders can mimic MS, but I'm sure your Drs could put your mind at rest about MS with a few more tests. I hope this helps. Take care.

[Roarah in reply to Buckley123]

I have a young family too. I think the best thing we can teach our children is how to live well in spite of fear, chronic illness and even sometimes terminal illness. My greatest hope is the children in my life never suffer from this crippling health anxiety. It is not only a horrible way to live I actually think it a great factor in causing all series illness. Extreme anxiety causes inflammation which is the common denominator in most grave illnesses, such as cancer, MS, heart attacks and strokes, and autoimmune. The clock is ticking for all of us we have to learn to accept that and to live without constantly hearing that tick. I try and think of how Michael J Fox or David Bowie as examples of how to live in the face of chronic and terminal illness. I hope to live like them and yes ultimately die like them too.

Until I sought treatment for my anxiety I honestly thought living with butterflies in my stomachs was normal. It isn't. I have not had a single butterfly since March. Four weeks after I began treatment I noticed for the first time in years I had a day without butterflies. I use to have butterflies every single day about something for atleast 20 years. They are gone. Even when I have had some really dire news as of late I stay calm. Honestly your ticking clock worry might speed that timer up.

[Buckley123 in reply to Roarah]

I think your right I know I need to look into counselling also I promised I would after my mums death and was thrown into this 2 months later so never really got around to it zxx

[Lisalou19 in reply to Buckley123]

Hi Jade,

I know it’s frightening for you but something I have learned along the way is that YES these illnesses can be passed through our genes but not necessarily the same illness.

I have an old friend from school her mum sadly has MS and has done since we were at secondary school , she’s still alive now. No quality of life though now 😢

Anyhow I met my friend a few weeks back and I asked if she had ever felt concerned about developing ms. Her response was , absolutely not as herself and sister have been to see a specialist and accident to him, MS skips generations and they had no risk of developing it. I hope this helps a little.

My understanding of Mysiotis, if you had the worse form of it, you would certainly know it by now as it progresses quite quickly. I would put the Mysiotis to the back of your mind for a minute. Xx

[Buckley123 in reply to Lisalou19]

Thanks Lisa

I wouldn’t tell your friend this but I know many of people that have ms and so do there children or mother brother or sister autoimmune seems to be a lucky dip it’s the autoimmune gene itself that is hereditary not the actual ms I don’t think I could be wrong but I’ve seen it many times .

I don’t actually think I have ms I’m just worried that I will end up similar position and I’m sure I’m over reacting I think where it is all so raw I just can’t help but think the worse everything a doctor says something or I get symptoms.

One lady said about health anxiety and I think they are right this has all knocked me for 6 out of no where xx

[Lisalou19 in reply to Buckley123]

It does sound like anxiety. I think it’s pretty justified why you would get it.

Remember stress feeds these buggers, so you need to source coping strategies . Meditation is always a good call x

[Roarah in reply to Lisalou19]

Buckley, do you know science is showing we can alter our genes not only negatively but also positively! One way is meditation it has been shown to lengthen certain genes that naturally shorten with age. Other ways to negatively and positively alter our genes is through diet. Exercise too can positively alter our genes.

I think our genic chance for diseases can be both positively and negatively changed. High stress, poor diet and a stagnant life style increase the chances of a genic disease being passed on but the opposit can and does also happen. Learning to over come our anxiety, eating high fiber whole foods and a half hour brisk walk are proving successful in changing the genic chance of acquiring heart disease and diabetes.

And if it Is impossible to prevent autoimmune disease or a cancer from occuring it is proven that staying active, reducing stress and eating less sugar and more fiber extends the lives of breast cancer patients and lessens or even prevents relapse flares in lupus patients. With the advances in medicine and the power staying positive You have the power to live a wonderful and hopefully long life even if you were to receive a very dire diagnosis.