Now I'm getting angry

[PJ2010]

Thank you all. I have an appointment in about 3 weeks with the specialist. I'm to have a blood test next week.

I think I have just learned to live with feeling like this.

[cjhnsn29]

PJ,
I went through a lot of Dr's telling me same things. I went to ENT. He stated what is was my internal medicine Dr disagree. I been to 6 Drs from one end of the state to another. I felt like I was getting the run around. Until finally 4 out of 6 gave me the sane answer now I am stable.

PJ I thought like you but it will get better I promise. Good luck you need to talk, I am around.

CJ

[PJ2010]

Well, after a six month wait, I've finally been given the privilege of a visit to see my specialist today. ��

You see, my specialist seems to think I only need to be seen every six months!!!

Oh well, I suppose they are busy with the real sick people.

The part that annoys me, is that having waited this long, I'm very unlikely to actually see the senior consultant. Last time the idiot I saw questioned whether I really have wegeners after having been treated for it by them for the last 6 years!!!

Unfortunately I'm likely to walk in there today with an attitude.

I wonder if this time they decide to be a little proactive? I would really like my hearing problems checked properly. Both my feet are still numb. I still have a fungal infection in my fingernails (I developed that 5 years ago as a result of the chemo). There is also a major more personal issue that has caused a relationship breakdown that they don't seem to care about. They always put my problems down to either smoking or ageing.

Ill let you guys know the outcome.

Have a nice day ��

[LisaMac]

Yikes! I hope you get the answers and respect you deserve.

[mishb]

How did your appointment go ?

[PJ2010]

Hi Michelle.

It went well. All my tests showed no disease activity. My blood pressure was an amazing 120/60 !!!

The doctor I saw was Dr. Sharma. He is a very knowledgable and nice person. I told him of all my concerns. He is sending me to a specialist to examine my hearing.

At first when I told him about my hearing loss, he said it was probably due to my years of working in a noisy environment. This annoyed me. I told him that ever since I first got this disease my hearing became a real problem and has noticeably worsened in the last few years. Im not sure he realises that this illness has an effect on our hearing. That is a worry.

I feel that the only people that know this disease are the ones with it. There are so many symptoms. I told him I feel ill all the time. All he said was that all my tests showed normal.

It still leaves me with the question 'why do I feel sick all the time?'

[Jayne 14]

Oh hon
That's awful to hear , you feel bad all the time
I feel bad some days then have other great runs of feeling well
The fatigue gets me frustrated though, having to pace myself and not do to much 1 day then rest is hard to get used to : but helps me
Your right - I feel fellow Wegs really understand how we feel
But it's not all bad :your blood pressure is great : maybe focus on small good things ??
Hugs x


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[Dirty Don]

After I achieved medical remission, I still felt fairly frequent fatigue (now that was overkill!!!), especially if I've done something strenuous. It does get better as one gets in better health/shape. I used to walk 18 in golf, now I'm a spoiled cart guy...way it is. Best to you.

[Jaha]

I'm glad that you got good report. I know what you mean when you say you feel bad all the time. I still have more bad days than good ones. It tends to make you question everything, your Docs, your meds, your lab tests and your sanity. We just have to keep on keep'n on and try to believe that someday it will get to more good than bad days. All the best to you!

[PJ2010]

Hi all,

well I finally received a letter from my hospital confirming I have been referred on to ENT. The letter advised me that there is a long wait to have my hearing problem tended to. All I could do was smile sarcastically and throw the letter in the bin. So much for that effort.

You know, this hearing problem is part of my wegeners and I stupidly thought I was under a specialist who was meant to be dealing with my illness. He appears only to be interested in whether my kidneys are still functioning or not.

I thought there here would be a wholistic approach to my treatment.

Do others on this forum suffer the same incompetence in their treatment?