[vix66]

Just diagnosed with MGUS & an autoimmune disease

by vix66 on Thu Nov 12, 2015 7:54 pm

I have not had the greatest experience with doctors lately, in fact ever actually, and I am not sure what is going on. I feel pretty ok at the moment but that's not always the case. My kidneys hurt a lot. (I had some great advise when I first posted on here a while go, but now need some more please)

After finding free light chains in my blood, a positive ANA and a few other things, I was diagnosed with MGUS 4 weeks ago by a haematologist. He saw me for 10 minutes, then discharged me from his care back to my GP, with no info, no explanation and no report sent to my GP as of yet, but told me I would probably be monitored every year by my GP and not to worry as MGUS has no symptoms? Not sure most of you will agree!

I had a urine creatinine test of 5.8 mmol/L that said 'refer to nephrology' so off I trotted to see that specialist this week. I have also have had pain in both my kidneys for several months, but scans are normal and function is 72 GFR so not that bad. She wasn't concerned about the 5.8 level.

I had some blood tests before I saw her and one came back as positive, it was the cytoplasmic ANCA screen, which can mean vasculitis (obviously that's a worry as it's an awful thing to have). She said if I had that I would be really ill and have more symptoms. She had no idea why my kidneys hurt, but said that she would confer with the other consultants and to come back in 2 months and see what happens in the mean time.

I questioned the positive ANCA and she said I had an auto immune disease, but it hadn't developed yet so don't worry. As for the pain she said to take paracetamol, but if it's kidney pain, they wont work? (Very strange)

Frankly I am fed up with being told not to worry; of course I am bloody worried, who wouldn't be? I have two clouds hanging over me, maybe they will develop, maybe not and I am not sure what to do.

Is having an undiagnosed autoimmune disease normal with MGUS? Any ideas who I can see or annoy next or find out which of the 80 autoimmune diseases it could be or what I can do?

Thanks in advance

[Kas]

Re: Just diagnosed with MGUS & an autoimmune disease

by Kas on Sun Nov 15, 2015 7:34 pm

I am not a doctor or nurse, just another MGUS person with an autoimmune disease.

It is very common for folk with an autoimmune disease to develop MGUS.

You do need to know if you have an autoimmune illness and what it is. They are not easy to diagnose, and you will probably need extensive testing and perhaps even a biopsy to do so. Autoimmune diseases can affect one or many organ systems in the body.

Autoimmune diseases are difficult to treat, and mainstream medicine mostly relies on immuno­suppressives and prednisone, both of which come with their own set of side effects. You will need to be closely monitored on them, should treatment be needed.

Probably best to be referred to a specialist such a rheumatologist for a general work up. A multiple myeloma specialist will also know where to send you, and I think a visit with one, even just once, is probably a good idea.

I follow my MGUS every 6 months with blood and urine tests.

[vix66]

Re: Just diagnosed with MGUS & an autoimmune disease

by vix66 on Tue Nov 17, 2015 7:02 pm

Hi,

Thank you for replying. I think I am going to have to go privately as I am not getting anywhere at the moment. But after what you have said I will call the kidney specialist and ask to be referred to a rheumatologist. I didn't realise they dealt with people with autoimmune disorders. Onwards and upwards then.

Thanks again

[Micki529]

Re: Just diagnosed with MGUS & an autoimmune disease

by Micki529 on Wed Nov 18, 2015 10:58 am

Vicki,

I wish I were as good as most here when it comes to understanding blood tests, numbers etc. Yes, I too am scared. They keep saying "don't worry" and yet send me for more tests.I too have a positive ANA and an M spike of 0.3. They have done blood tests, skeletal X-ray and a so far "everything looks good." Last week I had a bone marrow biopsy. The results will be in tomorrow.

My original problem of neuropathy is getting worse but the oncologist said that while MGUS can cause it, since I have had the neuropathy for at least five years, she doesn't think it can be the cause.

I am a nervous wreck over this thing; not only am I still sick, but no answers, just more problems and so much stress.

I would suggest you see another doctor, both a kidney specialist and rheumatologist. I am going to a major NYC hematologist/oncologist at a cancer center at one of New York's biggest hospitals. They must know what they are doing, but I am so scared.

[vix66]

Re: Just diagnosed with MGUS & an autoimmune disease

by vix66 on Thu Nov 19, 2015 7:04 am

I agree Micki, some of the people on here know so much and have been really helpful, they seem to know more than my doctors. I don't understand a lot of it, but what I do understand has taken hours of research. This site has been so helpful, although I am a little envious of the care and tests people get in the US.

It's all about insurance though. I have noticed that in the US because of insurance, people are tested a lot more. Prevention is better than cure and by diagnosing things early can save money. There just isn't the money in the UK national health system and it depends on where you live too as to the quality of care. I am probably going to have to go privately, which costs more than I can really afford, but health is more important. than money.

I spoke to the kidney specialist yesterday, she called me after I have left messages. She told me they would do no more investigations as they did not think it was my kidneys as the scan looked fine. Limbo again!

I have started on some homoeopathic meds to see if they help first. After all, the traditional medicines are the basis of all modern medicine without the chemicals and horrid side effects.
So fingers crossed they will help, if only to level some of the vitamins I am lacking, it would be a start.

Try not to worry; stress and worry make things worse, they certainly don't help (I am such a hypocrite as I worry all the time ) And an M-spike of 0.3 is quite low I think. I'm not a doctor so I don't know at which point they diagnose MGUS to myeloma, but you are at least having the right tests and it sounds like you are in good hands. Here they just watch the blood tests and wait, nothing else.

Good luck with everything,

xx

[MMFeb16,15]

Re: Just diagnosed with MGUS & an autoimmune disease

by MMFeb16,15 on Sat Dec 05, 2015 2:51 am

Dear Vicki:, I hope what I have gone through will help. Thirty years ago, at age 37, I lost my hearing in one day. For three months my GP could not find anything. Based on my Blood test he sent me to an oncologist. He said I have blood cancer. I was visiting him every week. He was asking if I had any symptoms. I had none. I went through Bone Marrow, MRI.

Finally my GP sent me to University Hospital to his professor and head of Otolaryngology. He ruled out Blood cancer and diagnosed me with Auto Immune Ear Disease. Treatment was similar to Multiple Myeloma. He also said I am a G6PD person. My hearing came back within a week - 60 right ear and 40Percent left ear.

Today my hematologist says that what I had thirty years ago was MGUS.

I did not go through any test or symptom until three years ago my GP sent me to Hematologist seeing my blood protein high - above ten percent. Since then I went for check up every six month, then every three month and finally on February 16, 2015 declared IgG Kappa multiple myeloma Stage IIA. I have gone through Rev plus Dex treatment and was declared VGPR after six cycle. Waiting for CR after eight cycle.
I hope my personal information helps you.

[vix66]

Re: Just diagnosed with MGUS & an autoimmune disease

by vix66 on Tue Dec 08, 2015 11:57 am

Hi,
Thank you for your reply and the information. You have been through a lot and I hope it all goes well in the future for you.
It does help reading other peoples experiences, it gives a good insight into what can happen.

The haematologist I saw has now written to my doctor and said that I should have a yearly blood test to monitor levels and although he has diagnosed MGUS he doesn't need to see me again unless the paraprotein levels exceed 10 g/l or urinary Bence Jones protein >0.5 g/l.
That worries me a little as isn't 10 g/l paraprotein high? What is the level that they start looking for multiple myeloma? Can you let me know if you have any idea please, as I think I should have blood tests every 6 months at least and I think they should be looking into everything before the levels reach 10 g/l.

Thats it really, the renal department will also be discharging me as they have no reason for the pain in my kidney area. I started on some homoeopathic medication and the pain in my side has significantly been reduced, so that's a good thing.

As for the Auto immune I have nothing to go on and I don't suppose I will get anywhere asking until I start showing any kind of symptoms, if at all.

I have to have some more blood tests done with the kidney department and my doctor in the next couple of weeks so I am throwing every kind of homoeopathic drug down me that will help (the lady I see is excellent and highly qualified) just to see if I can get my bloods back to normal. That may be impossible, but I am going to try, nothing ventured nothing gained as they say.
Good luck