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What The Heck?


sandymbme
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It has been a while since I have posted about my personal situation because it has become so complicated and confusing I am quite frankly overwhelmed. My doctor informed me three weeks ago that she would not release me to return to work, period, and that I needed to file for disability. To say this was hard to hear is a huge understatement. But at this point there are so many things going on with my body that make absolutely no sense and seem unconnected. So I was hoping perhaps someone here could shed some light...

1. A fairly recent MRI of the brain found possible demyelinating disease (aka MS, which scares the heck out of me!)

2. Recent bloodwork shows me being anemic, which my doctor found especially strange given that I don't menstruate, as well as my blood sugar being 220, eek!

3. My latest echocardiogram shows tricuspid valve regurgitation, as well as previously identified mitral valve regurgitation.

4. My fatigue and pain levels have skyrocketed.

5. I randomly lost about 16 pounds within a month. (Although admittedly, I'm not complaining so much about the result :( ! )

It seems like every system in my body is crashing at the same time, and my doc doesn't know how to make heads or tails of it. I have an appointment with Dr. Stillman at the Headache and Facial Pain Clinic at the Cleveland Clinic on July 15th, so I am sure we will address the neuro stuff then. And I of course will send the echo info to Dr. Grubb. But I just don't understand why everything is going at once. And a lot of my new issues can't be linked to POTS, so this is all very scary. Any insight would be much appreciated!

Sandy

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Sandyshell

I can't imagine how overwhelming this time is for you - I hope that you are getting the care and support you need.

Re your anaemia - there are different types of anaemia, not all of which are due to insufficient intake or blood loss. For example, the anaemia of chronic disease is usually linked to an underlying medical condition and is generally treated by addressing the underlying illness.

It sounds as though you've got good doctors, and the medical support you need.

I'll keep you in my thoughts and prayers.

With best wishes

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Sandy, Have you looked into an autoimmune neurological cause like CIPD or autoimmune autonomic neuropathy. Autoimmunity can attack any tissue in the body including the heart valves. Even MS is considered autoimmune. The reason why I ask, when I saw Dr. Grubb, I had just had a workup with an autoimmune neurologist who did a skin biopsy showing small fiber damage, he agreed with the neuro that it was likely autoimmune. Since then I have been treating with plasmapheresis and have had improvements in pain and bp/hr.

Also while treating there, one of the nurse's wife, who has scherloderma, also autoimmune was given the opportunity to go see Dr. Richard Burt at northwestern in chicago. He is treating autoimmune diseases like ms, diabetes, cipd, etcs with adult stem cell transplants. My nurses wife had this treatment and has now completely recovered. No one knows the long term response yet, but it was almost miraculous. She is back to work. If you google this doctor you can read more about what he is doing. He is completely ligite.

With you now showing demyelinating disease in the brain, which would by in the neurological world for sure, you might qualify.

BTW, I just got anemic too. My iron and ferretin are low and I have a high WBC, so they think it is a bleed somewhere. I was on an antirejection drug called cellcept, trying to get me off the pheresis, we think that is what caused mine. Any way best of luck to you, though you might like a new resource to look into.

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Sandy,

I'm so sorry you're going through all of this, especially all at once. The fear you have is real and you have every right to be scared, you are after all human. But you also have your humor (congratulations on the weight loss), your sanity, the very best doctors, extensive knowledge and access to an enormous knowledge base. The odds are with you.

I'll never say I know how you feel because only someone going through what you're going through could, but I do know what it's like to suddenly go from a very active working person to a couch potato. After becoming ill in July of 2008 and a diagnosis a year later, I finally admitted to myself six months ago that I am simply no longer physically capable of working and I filed for SSDI in March. I was denied. Lawyer hired. I doubt you would be denied with your doctor's backing. I've come to the realization that it is what it is and I gladly take advantage of anything and everything that might help me, including disability insurance (eventually), a handicap parking placard, reclining wheelchair, cooling vest and the hardest of all - the help of others. I no longer feel shame. I need it and I deserve it.

I wish I could offer some advice on some of your medical conditions, but I can't, other than saying that I too have gotten worse over the last couple of months, with more fatigue, worsening pains and other symptoms, also accompanied by a weight loss of close to 15 pounds. I know I'm not eating as much as I should because of the nausea (caused mostly by the meds) and I need to force myself to eat because I'm never hungry anymore. Perhaps that is one contributing factor.

Good luck.

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Thanks so much for the support! As I am sure you all know, it can help so much just to know I am not alone. My home health care nurse is coming tomorrow to draw some more blood for labs, so we'll see what happens next...

Sandy

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