My second trip to Poland

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby magoo » Tue Jul 13, 2010 5:28 am

Hi Brynn,
You have certainly been through a lot! I just wanted to tell you I can understand your concern.
I wanted to tell you about what has happened with me. I had a UTI at one point and I felt awful for weeks. A lot of symptoms came back and I was really getting discouraged. Good news is, it took longer than usual, but I did go back to my new normal. I have had several small illnesses which have negatively afffected me. I asked Dake about it and he found most of his patients had worsening of symptoms with infections, viruses, and even with vaccinations.
Here's what he said:
In terms of the increase in symptoms when you have a cold or virus, it may be related to a general stimulation of your immune system by the infectious process that effects the intensity of the immune reaction of cells that participate in the reaction to brain antigens released as part of the MS. I hear about similar patient experiences from our group after immunizations, flu, surgery, etc.

Take it slow and try not to worry. I know it's hard:) Take extra good care of yourself.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Brynn » Sun Jul 25, 2010 3:32 pm

Hi everyone! Thanks for the well wishes! I wanted to send out an update…Not meaning to sound too overly dramatic, I have had a challenging few months. I unfortunately have not seen a return of the tremendous improvements after my 2nd trip to Poland. We have found that I have been fighting reoccurring bladder infections, which are now finally gone, but just as troublesome is a low grade fever that we can’t seem to find the source of. My "normal" body temperature is 97.6 where I do great, but it insists on getting up to 99.9-101.5 and at that I have a really hard time. This is what we are working on now, but unfortunately, it makes my voice weak and my typing coordination stamina is short lived and typically gets used up doing my job computer work. I need to get beyond both of these issues to continue healing! So, I wish I had more exciting news…hopefully that will be still to come. In the meantime, my family has been lucky enough to take long weekends this summer up at Priest Lake, with the boys playing like crazy in the lake all day. I hope everyone is well and having a fantastic summer! Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby magoo » Sun Jul 25, 2010 5:19 pm

Oh Brynn, I am sorry to hear about the infections and fever. Those make even healthy people feel crummy. You do sound optimistic and I hope all of your improvements return soon. Be well!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Katie41 » Sun Jul 25, 2010 5:27 pm

Brynn,
So sorry to hear of your continuing difficulties. Well, one step at a time (even though we would love it to be otherwise!!!). Glad you have the bladder infections under control. On to the next.....
I hope for quick resolution for you :)
Katie
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