[lovelyamelia]

Please help, very scared

by lovelyamelia on Thu Nov 08, 2012 6:46 am

Hi there.First if all thank you so much for this board I feel i have managed to find more sensible,sage information from this than my doctor,and so admire the grace everyone on here seems to have.

I have a long history of health anxiety due to my father passing away unexpectedly when i was 5 and he was 31. So,this fall,when i started feeling really unbelievably tired to the point where my daily yoga and hard hikes with beloved dogs and even more beloved husband were getting impossible. Felt like I was climbing kilimanjaro,despite only weeks or a month before,doing fine.aching legs,restless maddening legs at night and breathlessness. Started feeling like I was carrying a heavy backpack on my chest,and nauseous all the time,and falling asleep multiple times in the day.Had a full heart workup and that was fine.

i went to my doctor and she for the twentieth time suggested prozac. I have been depressed before but it didn't feel like this.Then she set me up for B!2 shots and weekly iron infusions, because even though my hg is highish,and my total iron fine,my ferritin has been 7 or 11 for a decade now and we thought well,maybe that would do it.Had my first one,didn't feel any less tired,but restless legs improved instantly.Started getting acupuncture but then noticed was coming out in bruises at several of the needle sites.Then one night as I was heading upstairs to get my phone,massive wave of heat and full body sweating,rolling down face,back and neck.also felt vey shaky like low blood sugar despite having eaten.

another doctor wanted to run a few more tests and I guess had sent them to the heme/onc who was doing the iron Ivs.He walked in and said ,hmm some slightly odd blood results I see.I hadn't been told yet so was blindsided and made him tell me what. Said my immunoglobulins were low,g in particular at 385 and m at 30. He took more blood and told me not to worry.

Today it turns out there was a trace monoclonal iga and light chains so they are sending me for a bone marrow biopsy tomorrow.He keeps trying to be reassuring saying he is hoping for an MGUS diagnosis,which I am too despite feeling that is no prize either,but everything I read about MGUS is it has no symptoms and I feel completely debilitated by mine.

Does this sound to you more likely to be myeloma?it does to me but I can't tell if that's my anxiety talking.I am the major parent in my daughter's life and we are so connected it is ridiculous.I want to be hopeful but even hopeful is a few years isn't it?my girl is only 13 and will need me for a lot longer than a few years... I know you are all going through so much,and worse,and i don't mean to be insensitive by worrying about my situation which is as yet a diagnosis in limbo,but would so appreciate any points of view,or thoughts? especially about symptoms which my doctor say MGUS doesn't have so therefore makes me worry more it's multiple myeloma..

anyway sorry to have gone on so long'Love to all
Amelia xxxx

[Msdebdavis]

Re: Please help, very scared

by Msdebdavis on Thu Nov 08, 2012 1:54 pm

I am confirmed MGUS after blood tests for Lupus and RA and Lyme Disease were negative but we discovered the M spike. I have undergone a bone marrow and full body bone scan to confirm high risk MGUS. The fatigue comes in waves but otherwise symptomless. I have blood tests every 6 months for the rest of my life as my M spike is 1.5 and bone marrow 5 percent plasma.
While that is all about me you should not be overly concerned at this point. The first year was the most anxiety rodent feeling like a ticking time bomb but as time goes on you learn it is only one health concern among many others and you are being diligent with testing. Do no worry until there is something to worry about!!!!!! Living with MGUS reminds me how important it is to eat right and exercise and be ready for anything!!!! Stay strong ...

Debbie

[msdebdavis]

Re: Please help, very scared

by msdebdavis on Thu Nov 08, 2012 2:28 pm

Please accept my apology for the misused word "rodent" in my recent post. The correct word was meant to be "ridden". I will have my eyes checked next and never respond without using my glasses. Thank you.

[Anonymous]

Re: Please help, very scared

by Anonymous on Thu Nov 08, 2012 10:42 pm

Thanks so much for replying.I had a skeletal survey today and it came out good.Having bone marrow biopsy tomorrow.Still reeling from all this.I send love and hugs to you in your journey and thank you so much for being there for me in that dark moment last night xxxI don't have an M spike but I do have iga protein and lambda light chains.I;m really scared... I feel so tired but they keep telling me it probably had nothing to do with this.Which is weird because the only way we even found this was because I kept going back to the dr from being so fatigued..xxx