Just need to vent

[Corriel]

I really just need to vent before I explode.

My neuro's office is usually not very forthcoming with info but this is beyond me to comprehend.

I came home to a voice message this evening for an appointment with a specialist in another city.

I thought there was a mistake because I was not aware that I was being referred for anything.

Said specialist's office had my full name and obviously the correct phone number but he is a hematologist/oncologist.

I do not understand why my neuro did not think I should know why I am being referred to this doctor, never mind mentioning that I am being referred in the first place.

How any of this fits with my muscle weakness issues when they told me today at my neuro's office that my nerve conduction study results are still not back makes no sense either.

Now I have to wait until tomorrow to try to get answers. I had better get some too darn it. If he has a theory shouldn't he share it? Sheesh.

Ok, vent over, thanks for "listening". :-)

Corrie

[Corriel]

Alex, I am so glad the PARP side effects are lessening and I love your new goal!

Sarah, I wish I knew what they find unusual in my blood work when it is normal but I am hoping I am some sort of curiousity that the hematologist wants to see. I am still trying to figure out if it is related to my muscle weakness that the neuro insists is not MS related or just more fun. :-)

Candy, it does seem to be a venting week for us. I hope things get squared away for you soon. You have dealt with more than enough lately.

Hugs to all of you,

Corrie

[candy158]

It must be our day to vent Corrie ................ so glad that it is not just me.  The Tysabri here too is given at the clinic for all types of infusions.

I am hoping this is all worked out for you in a timely manner, and that you can get back on a road to feeling better.

((hugs))
Candy

[SarahL2491]

Yes, I was going to say, I go to an oncology clinic for blood work for my INR (blood thickness) and for my Tysabri infusion.

[HVAC]

Corrie,
   I just stopped feeling sick from the PARP. The first week was really rough. I was so sick. I decided to stick it out. Now it is better. I talked to lady the other day with Ovarian Cancer who has had it 16 years. I am going for that goal.

Alex

[Corriel]

Thanks Alex! The only abnormal count was related to lymphocytes which is likely due to Tecfidera but the count is slowly going back up and is finally in normal range so I have no idea what they are looking at.

Sadly, I am not feeling too patient about this and I do not know what it has to do with my arm/hand weakness so hopefully I can get some answers from either the neuro or the hem.

I hope you're feeling better on the PARP.  :)

C.

[HVAC]

Many specialty oncologists do more than cancer. For example a GYN/oncologist does complex tumors that are non cancerous. This gur is probably good with abnormal blood counts. A neurologist would not know about blood so much.

Alex

[Corriel]

Finally got a hold of the neuro's office and apparently he had sent a letter to the hematologist mentioning my MS and new muscle weakness. He attached my blood work at the time (just a CBC) and asked if any blood tests would be recommended.

The receptionist told me that he specifically asked about platelets but my count was in normal range and always has been.

She did confirm that they did not do a referral just asked a question and that the hematologist must have decided he wanted to see me.

Their office isn't open yet but now I have more information.  :)

[Corriel]

Thanks ladies, I am waiting to get through to my neuro's office this morning so hopefully I will have some more info soon.

I really wish he had given me the head's up first because the appointment is a 2 hour drive so I will need to take the day off work and I want to be able to prepare for the appointment so I need to know why it was asked for.  :)

Thanks so much!

Corrie

[karryon55]

Geez that's really really bad and clearly the Neuro has a long way to go when it comes to communication. The only way they will learn is to give them feedback.

I see a Haematologist for my Neutropenia and previously to check for any blood clotting problems and the place was obviously full of cancer patients. So he may have referred you for checks of your blood and not for other reasons.

I'm not condoning the way the Neuro has gone about this but I'm trying to put your mind into a different place until you know the reasons you have been referred to a haematologists.

I can't imagine how you are feeling right now but I know if I was in your shoes I would be putting in a complaint in writing not just giving verbal feedback. This has not been handled well and at the end of the day aren't these places we sick people visit all about patient care.

I sometimes think that some hospitals or facilities forget about that and seem to see them as a money making factory or just a place they work but all up they wouldn't have either if it wasn't for the people who require their "care" and the whole "care" things seems to go amiss.

Big (((Hugs))) coming your way.

Karry.

[Joiedecour]

Vent away.....that is not good. Why are they so bad at communicating????? And don't they think that a call from an oncologist's office might be a little freaky if you're not in the know in advance? I hope you can get through and get answers. I can identify  about to write a vent post myself  ; )