I am scared

[Mørphi]

Long day of poking, probing, injecting, extracting, scanning, electrocuting, stretching, more electrocuting and now it's bed time.

Wonder if I'll glow in the dark tonight or if all the holes they put in me will shine constellations on the ceiling.

[Mørphi]

I went for another round of blood tests last week. Or maybe that was the week before, I can't remember. Anyway, I'm not sure what they were looking for this time much less what they found.

Unfortunately, I just got off the phone with the receptionist at a new doctor's office to schedule an appointment. She said they wanted to see me ASAP so the appointment is this coming Monday morning. It would seem they didn't like what they saw.

The new doctor is an oncologist/hemotologist. My doc's office is already closed for today which means an anxiety-filled weekend is in store

[mjan]

Sorry to hear that you are facing some news that is making your anxious. It is "normal" to react that way.
However, not sure if you are a man of faith, NOT necessarily religion, but a believer, are you? Use your faith to get you through this time.

Now do you know the "Serenity Prayer?" It basically says, (God) Grant me the serenity to ACCEPT the things I cannot change, the COURAGE to change the things I can, and the WISDOM to know the difference.

Keep saying this prayer, over and over while you breathe in deeply through your nose..then.. let out your breathe very very slowly through your lips with teeth apart. While you are doing this centered breathing go somewhere in you mind that is peaceful and fun. I usually go the beach.

Try it.. and know that I will be thinking of you.
Remember you ARE what you think!

Warmly, Jan

[Mørphi]

Thank you Miss Jan

I know that prayer well.

Since I posted the last the thought occurred to me that if it were something very serious, surely my doc would have called before making the referral. At least I think he would have

[Mørphi]

It seems my WBC count was high on both the previous CBCs. They did another one today and it was higher than the previous two. I have no visible or clear signs of an infection anywhere so they're testing for leukemia. Those results won't be available until next week.

The following week I have an appointment with a rheumatologist as well as a follow-up with the neurologist.

I've taken my last gabapentin which means I'll have to deal with this pain and host of other symptoms unassisted. :-/

Also a new symptom surfaced yesterday and I don't know what to make of it or if it's something to be concerned about. When I take the weight off my feet, sit or lie down, the bottoms of my feet act weirdly. It's like continuous little muscle spasms that sort of pop and tingle. There's a candy that I think is called Pop Rocks. They're tiny little pieces that when you put them in your mouth they pop, bounce around and tingle a little bit. It feels like that.

The 'fog' returned, inconveniently, today as well. I struggled filling out the new patient paperwork having to look at my license to remember, confirm really, my address and zip code. On or about page 3 I realized that I was checking my phone for the date each time I needed to sign. I was unable to remember it from one page to the next.

Being in a new place while this was happening worsened it. I felt strange and out of place, everything felt off. It was very much like a dream where you're at someone's house, but it's a place you've never been and everything feels really strange, almost frightening to some extent.

I'm sorry for flapping my gums so much. Well, I guess tapping my fingers is more accurate. There's just nobody to talk to about any of this and those who "check" on me can't relate in the slightest and have no idea what I'm talking about.

Hopefully one of these docs will figure something out soon. I'll take even just a partial diagnosis if it'll help at least one symptom.

[mjan]

OH dear, I am sure you are more than concerned. I am too for you=HUGS!

Put this in God's hands to guide these health providers to find the exact cause and treatment.

Why can't you take anymore Gabapentin?

Who knows why you are having what seems like intense tingling..

Just know that you remain in my thoughts and prayers. So know that you'll NEVER go through any of this alone, got it?

Warmly, Jan

[Mørphi]

Miss Jan, thank you and HUGS to you!!

I've used all of my refills given by the surgeon. The neurologist said he's hesitant to prescribe anything until we know what's causing the symptoms. Part of me understands this but at the same time I really just want a pain-free day. I'll gladly except even a partial day.

With these multiple appointments coming perhaps some sort of diagnosis will be made and if not maybe I can get something for temporary relief.

Thanks again Miss Jan, I really appreciate you

[mjan]

Call your neuro and let them know you are out of Neurontin/Gabapentin. You are not to stop taking that drug abruptly. It could cause some crazy side effects.
Ask them what you should do.

Jan

[Mørphi]

Oh no, I didn't know that. I'll call the neurologist this morning to see what he wants to do. Maybe a few more days worth to taper off or a lower dose for a bit.

Thanks Miss Jan!!!

[Mørphi]

Got a whole new refill that'll be ready this afternoon
Crisis averted...thank you Miss Jan

[Mørphi]

Good news: I do not have leukemia. My wbc count has gone down a touch to 12.1 and I've gained another 4lbs since last week.

Bad news is my immunoglobulin isn't so hot.
Here's my breakdown, though idk what it means really.

Immunoglobulin G, Qn, Serum - 467 L mg/dL
__Normal range: 700-1600

IgG, subclass 1 - 207 L mg/dL
__Normal range: 422-1292

IgG, subclass 3 - 18 L mg/dL
__Normal range: 41-129

Immunoglobulin A, Qn, Serum - 81 L mg/dL
__Normal range: 91-414

IgG subclasses 2 & 4, Immunoglobulin M and Creatine Kinase were all within their proper range but were all also on the low end.

The doctor said that with levels this low, which he described as rare, he'd expect to be seeing me due to long term chronic infections, bronchitis, pneumonia etc.

I have none of these. Aside from pneumonia once about 20-25 years ago, I can't recall ever having anything like these.

He's going to confer with the Rheumatologist & Neurologist after my appointments on Monday. His first suggestion, aside from to keep digging, is to begin replacement therapy as soon as possible.

I wish I had gone to medical school so that I could understand these numbers and more largely what's wrong with me

[mjan]

Good news: I do not have leukemia. My wbc count has gone down a touch to 12.1 and I've gained another 4lbs since last week.

Bad news is my immunoglobulin isn't so hot.
Here's my breakdown, though idk what it means really.

Immunoglobulin G, Qn, Serum - 467 L mg/dL
__Normal range: 700-1600

IgG, subclass 1 - 207 L mg/dL
__Normal range: 422-1292

IgG, subclass 3 - 18 L mg/dL
__Normal range: 41-129

Immunoglobulin A, Qn, Serum - 81 L mg/dL
__Normal range: 91-414

IgG subclasses 2 & 4, Immunoglobulin M and Creatine Kinase were all within their proper range but were all also on the low end.

The doctor said that with levels this low, which he described as rare, he'd expect to be seeing me due to long term chronic infections, bronchitis, pneumonia etc.

I have none of these. Aside from pneumonia once about 20-25 years ago, I can't recall ever having anything like these.

He's going to confer with the Rheumatologist & Neurologist after my appointments on Monday. His first suggestion, aside from to keep digging, is to begin replacement therapy as soon as possible.

I wish I had gone to medical school so that I could understand these numbers and more largely what's wrong with me

First of all, I am glad to know that it isn't Leukemia. You must be relieved. I would do a google search to familiarize yourself with the terms. But that's me.
I would also put this on the Gen Discussion page as there are some nurses who may know what these test results could mean. Its a thought.

What kind of "replacement" therapy are they thinking of..

Hugs to you~
Jan

[Mørphi]

Hi Miss Jan

I'll do a copy & paste and thank you for the suggestion.
I've asked Mr. Google but thus far everything I've found discusses low levels like these with chronic infections and such. I'm not sure how it applies to me as I seem to be outside of that box.

The replacement therapy is Immunoglobulin Replacement Therapy. The Dr said it's typically used to help prevent and/or decrease the length of chronic infections, pneumonia, bronchitis etc but because my levels are so low he feels it's needed.

This therapy hasn't been scheduled yet because he wants to speak with the Rheumatologist and Neurologist after I meet with both on Monday (they are all in the same hospital/medical complex). I see a team forming which is a good thing.

[mjan]

Hi Miss Jan

I'll do a copy & paste and thank you for the suggestion.
I've asked Mr. Google but thus far everything I've found discusses low levels like these with chronic infections and such. I'm not sure how it applies to me as I seem to be outside of that box.

The replacement therapy is Immunoglobulin Replacement Therapy. The Dr said it's typically used to help prevent and/or decrease the length of chronic infections, pneumonia, bronchitis etc but because my levels are so low he feels it's needed.

This therapy hasn't been scheduled yet because he wants to speak with the Rheumatologist and Neurologist after I meet with both on Monday (they are all in the same hospital/medical complex). I see a team forming which is a good thing.

Again, I would get a 2nd opinion (if you can) and run this past the medical nurses on this site under gen Discussions. Good luck.. soon you'll have answers and treatment!

[Mørphi]

Hugs to you, Miss Jan. You're so kind

I posted a bit in the general discussion area so we'll see if anyone's able to relate or shed a little light on the matter.