AnonymousDecember 12, 2009 at 5:09 pm
I have some questions for the old timers here. Hubby has CIDP-MADSAM. He has been treated for 2 years now with monthly IVIG. He has lots of axonal damage i.e. atrophied thenar plane and atrophied forearm, and some flopping of the right foot.
At his last neuro. appointment he mentioned that he has bouts of profuse sweating. When he goes outside and comes inside, he sweats profusely to the point of having a wet shirt and has to stand in front of a fan. And he has major fatigue. The neuro. said he needed to see his GP for referral to an internist as he could have a cancer, or it could just be hormonal. The neuro. suggested to the GP that he have “minimally a chest xray and serum protein phoresis”.
Last week GP sent him for the chest xray and the bloodwork. We got copies back on Tuesday of the bloodwork. It showed low hemoglobin, low rbc’s, low hematocrit and the pathologist who interpreted the blood work stated “polyclonal gammopathy”. We are waiting to hear from the GP as to the next step for testing. In the meanwhile I have been googling to try to figure out what might be going on. All I can figure out is he could have a cancer such as Hodgkins, Lymphoma or he could have an infection somewhere.
Has anyone on this forum any experience with any symptoms and blood results such as his? Any comments would be appreciated very much as I am worrying a lot.
AnonymousDecember 12, 2009 at 7:16 pm
I’m wondering if the IVIG is the culprit here. A few years ago I spent some time researching what affects IVIG has on blood test results. Emily had some blood tests come back with low iron, low RBC’s & low hematocrit a few times too – they were all just slightly low. We corrected this with a daily multi-vitamin with iron.
I learned IVIG can lower iron – which could cause the low hemoglobin.
(I lost the link to this page)
A low red blood cell count could be from the IVIG as well. If IVIG increases the SED rate & shows a higher level of inflammation, then I think it could also show a lower red blood cell count because a low red cell blood count is indicative of chronic inflammation. Also I’m also assuming if you have CIDP it could lower the RBC’s.
The hematrocrit is also linked to low iron. It could also be low if he was dehydrated before the test.
Polyclonal gammopathy is from an increase in several different immunoglobulins. It could make sense any person who gets IVIG would have this.
How far off are his levels?
Is it possible he is sweating because his sympathetic nervous system was affected by CIDP & therefore has trouble acclimating to a temperature change? Is it possible he is experiencing low blood sugar? That would explain the sweating & fatigue. I am hypoglycemic & if I over do it & haven’t eaten in awhile I will sweat like crazy & then get really tired.
Just trying to give some other options. Let us know what happens with this.
AnonymousDecember 12, 2009 at 8:16 pm
Thanks for the response. Everything you say makes sense and is very interesting. All his levels were just slightly below the normal ranges i.e. the hemacrit, the Hgb, and RBC’s. And then the second page said he had polyclonal gammopathy and your comment about people on IVIG having this makes sense too. I wondered about the sympathetic nervous system being out of whack due to CIDP too. I got really frustrated at the neuro. appt. because the neuro. was so unhelpful with this issue. When he went to the GP who is a nice guy and is interested in CIDP he was a bit flummoxed about what was going on and why the neuro. wanted the xray and bloodwork. I’ll keep you posted Kelly. I expect the GP should phone hubby this week after he looks at the bloodwork. But these GP’s are so overworked that who knows how long before he even looks at the incoming results from the lab.
Once again thank you so much.
AnonymousDecember 13, 2009 at 6:36 pm
Laurel – I was told that when blood test results come back abnormal that dr’s will order another round – just to make sure they are true results. Maybe giving the GP a call on Monday & asking him to order them again would be a good idea. That way you can have 2 results to compare.
I think you should start having your husband take a daily multivitamin with iron to see if it makes a difference. Make sure he drinks water before the test too. We always try to schedule Emily’s blood tests for mid-late afternoon to make sure she is well hydrated.
I was told slightly lower than normal tests aren’t anything to get too worried about. Those are the issues that can be corrected. It’s when they are way too low or way too high that dr’s start to get worried.
How often does he get his blood taken? I think it’s standard procedure to have regular blood draws when taking IVIG. We haven’t done them in awhile on Emily but we used to do monthly blood draws.
AnonymousDecember 14, 2009 at 7:58 pm
He has liver and kidney function bloodwork every 3 months and that is always normal. I will get some multivitamins with iron, and for sure will get him drinking lots before his next bloodwork. We haven’t heard anything from the GP so far as to what he wants–so will give him til Wednesday and then we will call him. Hubby is doing his IVIG today and tomorrow so he is preoccupied. Thanks Kelly–you are a sweetie.
December 14, 2009 at 11:40 pm
Sorry you guys are having these problems. Kevie gets that sweating too. I have contemplated autonomic response because of cidp, but his cidp seems to be doing good, his stregnth is great. Hence the decision to wean. The leaky gut thing could be the cause of Kevies sweating, fatigue, overall not feeling well. We too have had low results on occassion and then they are normal the next time. One of the results if I remember was blamed on taking a breathe before being accessed and that changed oxygen amounts which changed the number? Weird. Once rbc count was low, the vit D is low too which the gastro and neuro seem to think most people have low vit d, the neuro included while taking 2000 iu. One of the tests the gastro ordered for LG is a blood test that checks Igg levels, I mentioned that the ivig would probably affect the results, he said he doesn’t think so, I said check and then we will do it so as not to waste away at our lifetime benefit. I really think that there are so many complex diseases and medicines (ivig) that it becomes nearly impossible for them to remember everything. Thats why we have to have an interest too!! Your husband is lucky to have you!!! The thing that I admire about our neuro and this new gastro is that when a question comes up and they are not certain, they are not too proud to say they don’t know and will check into it or refer me to a specialist. Thats what makes a good doc and doc/patient relationship. I sense you are not at thAt place with your docs, so you will have to work harder!!! You are a really strong woman, helping your hubby and having ms yourself, I do not know how you do it!!! I can’t remember, but are you a nurse?
Well, we will say a prayer for you so that you have the energy to figure this out!
DAwn Kevies mom
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