Been a long road, feeling unexpectedly happy and enlightened - not sure if this is normal…
Whilst furloughed I felt something was wrong, numbness in foot, pins and needles in hand, waking me up.
I was diagnosed with MGUS. That’s all I was told. My spider sense told me the GP wasn’t really sure about MGUS. So I insisted I was sent to someone with knowledge and was sent to a haematologist
Turned out I had MGUS Igm Lambda and B12 deficiency.
Sent to a haematologist to investigate. 27 blood tests ordered. I was found to have Anti Mag Neuropathy which is linked to MGUS Igm. This was causing the issues I have.
Anti Mag neuropathy is very rare - 1 in a 100,000 have it.
Then I was sent for a cancer scan for waldenstroms which is a rare cancer linked to MGUS Igm and anti Mag neuropathy.
I had to wait 9 weeks for results. Luckily I was clear.
Sent to a Neurologist who confirmed I have anti Mag neuropathy and also Functional Neuropathy Disorder… didn’t see that coming.
So from MGUS to four conditions.
I was numb really, but in the last fortnight I feel alive. I feel different, I feel kinder… is this a psychological reaction to being so scared?
Good morning @Kev. Wow, what a time to be diagnosed. It must’ve been a really hard time. I’m glad you persevered with your GP otherwise you may have been no further down the line.
It’s really interesting reading how you felt. I think that the uncertainty is the worst feeling ever so it makes sense that you have some kind of power back now you have a diagnosis.
If only I could answer your last question! Our minds react in so many different ways don’t they. Just from reading this, it seems to me that you are really aware of your feelings. Just keep an eye on them. In my experience they sometimes change daily, weekly or months after! It can sometimes be a roller coaster of a journey.
Please keep sharing and let us know how you are doing. Have you got a good support system around you? In the meantime take that amazing feeling you have an enjoy the Easter weekend!
Hi @Kev, I think I have come to realise that there is no normal or right or wrong way to feel we are all unique special people. I think you have got to take Covid times into account and the clocks going forward and probably so many other things. We also did not get a lot of natural light/sunshine in lockdown. Also you have had at least 4 shocks in a year.
You have gone through an awful lot in a year, emotionally and also physically.
I think, and I am not medically trained, that shock really takes it’s toll, plus feeling isolated, scared, confused etc. your world was probably rocked and you enter a parallel universe that speaks a completely new language as you have shown in your post.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at firstname.lastname@example.org (might not be available over the bank holiday but we are !!)
Personally I would say be kind to yourself, spoil yourself, go with the flow and you now are part of a support forum and not alone.
Me again the support line is available over the Bank Holidays Friday 2nd to Monday 5th April10am-1pm every day 0808 2080 888 email@example.com
Wow @Kev . You sound in a very healthy place mentally even after everything that has happened. I hope you’re able to enjoy life to the full and get any support that you need. Check in with us if you need to, it’s always nice to hear how people are getting on.
Hello I am new on this, I feel so nervous… I was diagnosed with MGUS last year in March… I know that some of you are all in a more serious health position than me… but I just feel like I’m going mad, constant pain especially in my hips and feet, and my back… just had my bloods again today so waiting to hear back as they check me every 6 months … would be great to get your advice or support thanks … I also have been told I have Hypoglycaemia I just feel that my health is getting worse… I can’t walk far at all … tired a lot of the time and I now have to have VB12 injections every 12 weeks …
Hi @Maxwe3s thanks so, so much for having the courage to post on our forum, a great big welcome to you. I find it very supportive and I hope that you will too.
I cannot help you medically as I have another blood cancer but I also remember that lonely feeling of being the only one in the position I was and feeling that I was going mad.
I still always get anxious before and during medical tests and appointments.
Have you asked someone medical dealing with you for help about what you can do as you are in constant pain in your hips, feet, back and being so tired?
I have learnt to write down everything I want to say and ask beforehand and be ‘pleasantly assertive’ when I tell my medical team about my symptoms and the affect they are having on my quality of life and asking them for help.
Have you got the support of family and friends?
Anyway we are here to support you and the Blood Cancer UK’s support line details are above if you would like to talk to someone.
Please let us know how you get on and I really look forward to hearing more about you.