Twinkle if you get in touch with Bob Perry he can tell you if you have a WM consultant nearby.
I think perhaps I’ve just been lucky with my WM as at this time I have had very few symptoms. I do know though that others have all sorts.
All the best
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Bananacake I know only too well what cold agglutinin can do.
I thought I had Reynauds as it’s very similar. However the effects have much improved after having my treatment. I still make sure I keep warm though and have an array of socks of every thickness!!
Interesting about the family connection, I think there is some thinking along that line but nothing conclusive.
I have a friend whose mother had Chronic lymphocytic leukaemia (CLL) and she has just recently been diagnosed with MGUS.
All the best
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Thanks AnnD. I think there is one at the QE Hospital in Birmingham. I was deliberately staying away from there as I worked there many moons ago. I didn’t want to bump into anyone I knew. Hence asking for my treatment at the hospital where I go now. But, maybe there is another one elsewhere.
Twinkle
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Hello@AnnD,thanks for your reply thats interesting that you thought it was Raynaurds and yes the symptoms are similar ,I’m glad to hear that you’ve got the right treatment now which is helping you.There has been a thread on the forum on difficulty keeping warm ,lots of "wooliness"involved.I have to watch myself with cold hands, however,yesterday my index finger decided to go purple ,white on tip and numb for 30 mins ,strange it happened twice never happened before usually just feel cold so ill bring it up with my GP add it to the list !!Im sure it probably is Raynaurds as my MGUS is IGg.Yes with the family connection ,my Brother had Non Hodgkins Lymphoma ,the "aggresive "type so he said ,was treated and thankfully fully recovered decades later.I wish your friend well with the MGUS diagnosis,and yourself.
Bannanacake
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Hi Sajdee,
I have Waldentrom M. I have never found anyone with it. I had treatment just prior to Covid. Which i subsequently found was unecessery by changing specialist. Rituximab has rendered the vaccine ineffective and i now have hypogammaglobuima meaning immune system ineffective. Now covid is far more a threat than WG which i am lucky has yet to effect me. I hope your ok stay strong M
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Didn’t know where to put this as the thread has moved on a bit since my last visit.
My Consultant didn’t know what to say about the numbness in my legs and feet. He suggested it might be neurological. He didn’t seem too bothered.
I had my 4th Covid jab. (1st booster) I had the Moderna one. It made my left half of my body very painful and achey for a few few days, and I got a stomach upset. But the reason why I am mentioning it, I haven’t had the numb feelings in my legs since having it. I don’t know if that is just a coincidence. Odd though. Will tell my Consultant next time I speak to him in June.
Have also gone back to work part time. I’m enjoying it. But finding it very hard going.
Hope you are all feeling a bit better.
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Hi Twinkle,that is an interesting observation I am surprised he didnt act in the" thinking it was neurological" however I guess if you are seeing him in June you could monitor it yourself and report back.I have numbness in my feet caused by pressure on the peripheral nerves ,I was reffered to Neuro for this and it was the Neurologist who discovered the MGUS after a blood screen.Im due to see her again as numbness its not improving ,its really debilitating.Anyhow Im glad to hear youve got rid of your numbness in legs and are back at work. I had the spring booster (Pfizer )because of MGUS and surprisingly for me too it made my numbness worse and I was sooo tired ,slightly better 2 weeks on. Take it easy though.
Bannanacake
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Hi @Twinkle and @Bannanacake aren’t we complex beings.
I have numb toes since Shingles in 2013 although it is slightly better over time, however the Shingles re-rears it’s head anywhere in my body if I overdo it emotionally medically, physically or practically.
Look after yourselves both of you.
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Hi @Erica,yes shingles is certainly one to watch out for,my husband gets it and as you
Say it will catch you out if you overdo it .I hope your numb toes are behaving, we certainly are complex beings .I’m happy to say I made a bannanacake today so that was an achievement ,me looking after my self 
. Thank you for your kind words.
Bannanacake
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Oh @Bannanacake I feel for your husband.
My numb toes are all cosy in my bed socks at the moment, thanks for asking.
Oh, I can smell that banana cake from here.
I am impressed with your achievement.
Keep looking after yourself
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Hi Sara
I also have WM. I believe its a bit rare. After a few months of watch and wait. I started treatment on18.10.17. This was 6 cycles (1 a month) of Rituximab & Bendamustine known as R-Benda.
Then 2 yr maintenance of Rituximab every 8 wks.
Things went really Dr Shiva said it was good remission which is strange because remission is not possible.
Anyway things took down turn not with cancer but with quite serious infections 2 numerous to list.
I have been on monthly infusions of imuniglobolim for my low immunity which i think really help.
So its about 6 yrs since diagnosis. i am really active and well.
I wont tell u to cheer up or any platitudes like that because i know it use irritate me when people were understanding.
Arthur
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Great to hear from you and it is really useful to hear your experiences @art305
Yes, I think it is so important not to try and take people’s feelings away from them, it used to annoy me too.
I am so glad that you are really active and well, enjoy yourself and look after yourself.
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Hi Twinkle
Firstly please may I apologise for the very late response! I havnt been on here for quite some time. I’ve read through the thread since my last visit and hoping all is ok with you??
I am now 4.5 years post treatment, on watch & wait with 3 monthly active monitoring. My para proteins are slowly creeping up but I am still asymptomatic so am keeping positive.
Hoping to read further updates and that you are keeping well.
Sajdee xx
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Hi @sajdee what have you been up since we last heard from you?
Look after yourself
His Sajdee,
Glad you are doing so well. 4.5 years is amazing!! 
I last heard from my consultant 28th June. He said my para proteins were so low that they couldn’t measure them. But it was a shame he couldn’t say the same about the cancer. It’s building back up in my blood. He can’t be too worried about it, as I am not having another blood test until October. I found it quite depressing news. I knew it was going to come back at some point. But the chemo for this ended a year ago last April. I was hoping for a bit more time.
I was trying to get my life back a bit. I went with my heart rather than my head, and adopted a Golden Lab Retriever. I have now had Libby for 6 weeks. She is 14 weeks old now. She gets her final jab tomorrow and then in another week I can finally take her for a walk. I can’t wait! Neither can she, as she is so full of energy.
I don’t think my Consultant was too pleased when I told him I had gotten her. But she is so gorgeous. She has given me something else to focus on. I think taking her out for walks every day will be a good mood booster too.
Twinkle xx
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Oh @Twinkle yes, my next blood tests are Oct too.
Your adopted Golden Lab Retriever, Libby, sounds absolutely gorgeous and sounds, to me, to be ‘just what the doctor ordered’ !!!
What a distraction and it certainly means you have to take her out for walks, if you are nosey like me walking is the best occupation.
I expect regular updates from you on both of your progresses, enjoy, and be kind to yourself
Thanks Erica.
I don’t know if this will work. But this is a photo of Libby in her paddling pool a couple of weeks ago. When we had all of that nice weather.
I’m more than happy to share photo’s if they help cheer everyone up!!
xxx
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Oh @Twinkle Libby is adorable.
Yes, thanks so much and a photo occasionally would be lovely and therapeutic I am sure
Ahhh @Twinkle! Thank you so much for sharing the beautiful photo of Libby. It really cheered me up. I love dogs but am unable to have one of my own but I love meeting other people’s dogs. I wish you well with everything. Please continue to update us with photos. Warm wishes. Willow x
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Hi Twinkle,
Good to hear from you. I’m so sorry for your news from your consultant and your recent tests. But as you say if more treatment hasn’t yet been suggested that’s a good thing right?? How do you feel in yourself?
How lovely getting a puppy! I’m a true dog lover and believe it is a positive thing for you. They certainly keep you occupied and the dog walks are always a good thing.
Keep in touch and take care xx
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