[mariposaParticipant]

Hi I have Mgus and I got travel insurance with the co-op no problem. (If you get a co-op card you get a reduced price).
I was diagnosed in October last year. At first I was so worried, I have been having tests every three to four months. Now I don’t really think about it.
I hope you are doing OK and you enjoy your special holiday. We’ve been to Lanzarote 3 times and are going again in November and again in January as we have a villa in Playa Blanca.
Wherever you are off to, don’t worry and have a great time.
Best wishes x

[mariposaParticipant]

I had a hospital appointment 66wks ago, paraproteins 9. A few weeks ago I had back pain but it wasn’t too bad. Since then I’ve had a lot of pain in my right hip and lower leg, a few twinges in my thigh. It’s much worse at night.
Has anyone else had this ?
I’m still waiting to see if I’ve got Parkinson’s..it might be that.
Thanks

[mariposaParticipant]

I have had under active thyroid and high blood pressure for over 40yrs. Last year I had a dizzy spell when I was admitted for 2nights to see if I had had a stroke.( I didn’t thank goodness).
One of the tests showed paraprotein levels at 9. Following an initial consultation and bone marrow biopsy, I was diagnosed with Mgus. I’ve had 2 follow up appointments where my level has stayed at 9.
Iam soon to have a scan to see if the tremor in my right hand is due to Parkinson’s. That is a bigger worry at the moment.
As you say, this getting old lark is no fun.(I was 70 in January)
Try not to worry, you are in good hands and people on this forum will help you if they can. Take care x

[mariposaParticipant]

Hi. I was diagnosed with Mgus last October followinga bone marrow biopsy. It was a complete shock but now it’s pretty much faded into the background. I had a haematology appointment which showed my paraproteins were 9 which is low.
I’m also undergoing tests for high blood pressure and Parkinsons. I feel fine so it’s difficult to accept that I have problems.
I’m much older than you, but you’re in safe hands. I won’t say don’t worry because we all do. I wish you all the best. Take care x

[mariposaParticipant]

Where are you ? I’m in Bristol

[mariposaParticipant]

Hi.I had a biopsy done in October. I had 3 injections of local anesthetic which made the process bearable, although it wasn’t nice when they were going through the bone, I managed OK.
I wasn’t offered gas and Air. It might be worth getting some rescue remedy from the chemist to ease your anxiety.
Try not to tense up because that makes it harder for them and worse for you.
Hope you get on OK x

[mariposaParticipant]

Hi. I’ve been diagnosed with Mgus. I have been told that I am borderline Parkinson’s whatever that means.
I feel that there is a mix of symptoms that could apply to either conditions.
I would be interested to know if you ever found any information about a possible link.
I hope you have been able to move on from losing your mum and can remember all the good times you had together ❤

[mariposaParticipant]

You’re not going crazy 😜 I don’t know how long I’ve had it. Looking back lots of things make sense. Nothing to put your finger on, but a lot of unexplained little things..it always seemed to be me that had anything doing the rounds, otherwise OK except for high blood pressure and underactive thyroid. I often wonder if it’s long term medication that causes a lot of problems.
Keep doing what you’re doing and use this forum to get support from others who have gone through it x
Show

[mariposaParticipant]

Hi. I can’t claim to be diagnosed at a young age as I have just had my 70th birthday….but I understand all the anxiety and stress. I found out, like most people, when I had blood tests that found raised paraproteins.
Mgus is a strange thing to get your head around, it feels odd knowing that you’ve got this condition that nobody has heard of, with no symptoms, yet you have to be monitored every few months or so.
All the information that I have found says that you can have Mgus for many years and even if you should be one of the small number that go on to more serious things there are plenty of treatments available.
I was diagnosed last October, after the initial shock I am just getting on with life. I read something recently which said words to the effect of
“No outcome of any situation has ever been changed by the amount of worrying done before it ”
That helped me and I hope it will help you. Take care x

[mariposaParticipant]

I’ve had my autumn booster…now I am on holiday and tested positive for covid 🙁

• This reply was modified 2 years ago by  mariposa.

[mariposaParticipant]

Hi. I have recently been diagnosed with Mgus..I spent the weeks before going through all the things that you described. The waiting is horrible, but if you don’t have paraproteins that can only be a good thing. Mine were 9. I haven’t got to have any treatment for now, just regular blood tests.
Since my diagnosis I have been diagnosed with borderline Parkinson’s which find hard to accept. Apparently I have to start taking medication in a few weeks.
I’m trying to be positive and glad that both conditions have been found early and I’m being treated.
I know it’s hard, but I found that everyone on here are so supportive and happy to help.
Take care and keep us posted x

[mariposaParticipant]

Thank you. It’s a good to know more about it. I have just been told that I have borderline Parkinson’s. I have been given a prescription for Co – careledopa.
I’m reluctant to take anything, but I have to see if it makes my symptoms improve.I hardly have any symptoms, but I suppose I have to follow the advice .
Seems that I’m likely to have at least one incurable condition to deal with. Hopefully not for several years. I will be 70 soon, so I have had my 3score years and ten.
Lots of people aren’t that lucky, so I am counting my blessings that both conditions have been found very early.
Time will tell, I am going on holiday and I am determined to have a brilliant Christmas. All this certainly focuses your mind to the things that really matter.
Take care everyone.

[mariposaParticipant]

Thank you everyone.

[mariposaParticipant]

So sorry to hear that you have so much to cope with. I know that for some people, Mgus doesn’t develop into anything more, but I am aware that every time I go for a check up things can change quickly.
I have got to see a neurologist for possible Parkinson’s , and also a physio in a month.
I will be 70 in January so I a similar age to you. I try to be positive and hope that I am one of the lucky ones.
Look after yourself x

[mariposaParticipant]

It turns out that I’ve got Mgus. I know that it can develop into myeloma, but for the moment I am so thankful to know that I will have regular blood tests to keep watching for any changes.
I really appreciate all the support and encouragement, it really helped me get through the tests and the waiting for results.
Thank you and best wishes to you all.

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