Hello yvonnese.
I am inclined to agree with you and though I am in a low risk category even as regards MGUS (at present) I have always considered my immune system to be wayward. The major problem is not so much that it is less effective but that it is liable to over react when dealing with an illness/infection. Some years back I had a flu jab and my body’s reaction was quite spectacular. The point of injection became a hard lump, I had the worst bout of flu in my life (in fact that’s the only bout of flu I can recall having in living memory) and I lost the use of my shoulder for about a year. Since giving up on flu jabs I have never had flu again.
Bearing in mind that the symptoms of flu are the effect of your body’s immune reaction, if your body’s immune system is ‘flakey’ (or the vaccine is faulty), you can get a ‘pseudo’ bout of flu from the flu jab. I wouldn’t ever contemplate having another flu jab but that’s based purely on the effect it had on me.
Any diagnosis does have an effect on a person, which is not an attempt by me to disregard your experience. When I had kidney cancer my experience with the hospital was horrific from beginning to end. At one stage I was at work with ten litre bottles of water across my desk and I didn’t realise that it was abnormal to drink such vast amounts of water and I never drank water beforehand. I never mentioned this to my GP or the hospital because they weren’t listening to me.
If I have learned anything from that experience it is to get your results (which is imperative and your legal right) and try and reach level-headed and sensible conclusions based on the symptoms you are experiencing. I am alive today because I fought my Consultant.
I would go as far as to suggest that it is absurd to suggest that your immune system won’t be affected with a disorder like this but, in the eyes of the hospital, it isn’t a treatable or life-threatening condition. Have you been in hospital with your uti’s and is your eGFR stable ?
I can’t diagnose what’s going on but, if they won’t deal with it as a symptom of MGUS, then it seems sensible that they investigate it as potentially being something else.
