I also have a question about Pernicious Anemia

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Shanlee33

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Orlando, FL
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First off I have to say I am so happy I found this thread – I have been searching for information and have had very little luck, then I came across another PA post and felt some relief.
I am new to diving and I love it! So I am hoping that if I provide a brief overview of the issue’s I am having maybe someone here can recommend something other than me quitting this new found thing that I really love.

I was diagnosed with severe genetic PA (pernicious anemia) in 2009 while being tested for MS. In August of 2009 I woke up early in the morning and my whole right side was numb and tingling, I was extremely dizzy and couldn’t focus and felt very confused. My eye sight was strained and I had significant ringing in my ears that wouldn’t go away; I was unable to speak clearly. I did not want to go to the ER so I went to a Centra Care, the Dr. refused to treat me as he believed I had suffered a mild “mini” stroke and told me to go to the ER; I didn’t I went to a neurologist instead, I don’t do hospitals. The neurologist believed that I had MS, I had showed positive for Babinski's reflex. I underwent multiple tests, blood work, MRI etc. He informed me that I didn’t have MS after all; I had missing intrinsic factor and the MRI indicated brain lesions’; I had a very bad case of pernicious anemia. He explained to me that I had a very severe case of the illness, the worst he had ever seen (though he hadn’t had many patients with it) my range was under 120 and that I needed to start multiple injections immediately. He was unsure if the neurological damage would or could be reversed. He explained to me that the disease begins slowly and may take decades to fully establish, that it generally occurs in people much older than me (I'm 32), that my body's immune system was attacking the cells that make intrinsic factor and that PA is a decrease in red blood cells that occurs when the body cannot properly absorb B12 from the gastrointestinal tract. He informed me that Vitamin B12 therapy was necessary for the proper development of red blood cells and without it you cannot survive and would eventually succumb to heart failure and death without any treatment. Recently I have had random dizzy spells with vomiting and tinnitus, I cannot stand with my eyes closed without feeling off balance, my head has become sore at the base where it meets my spine, and I have twitching/shaking in my upper right side and hand that seems to be a nerve issue. I was on multiple injections a month, however I now take an injection when I feel like I need one. Plus I am supplementing my Folate and other B’s. It has been requested that I also have a spinal aspiration. I am currently looking for a new Dr, as I am not thrilled with mine.

So now here I am getting into diving, I am already hooked (even though I am a newbie) and I am struggling. For days after any dive, I feel very sluggish and sensitive; neurologically I am in a fog, extremely forgetful and experience a lot of numbness. On one dive I had significant ringing (tinnitus), ear pain, dizziness and vomiting while underwater at only about 30ft. On another I became extremely faint, was able to exit the water and then got ill. I was informed that breathing compressed air could be a major factor because with PA there is already a lack of oxygen in the body, though I am unsure and have yet to meet any other divers with PA. Really, my two main concerns with the diving are my forgetfulness (I don’t want to be a liability to anyone or put a buddy in danger – let me note that I have not gone a dive since the last time I got sick and what happens to me physically for the days following a dive. I have had many people tell me to find a new hobby, and well maybe after some feedback here I will have to. But I really don’t want to, I recently joined PAS (pernicious anemia society) which has been a godsend in regards to the illness and treatment, since doctors here in the states don’t seem to understand the illness; however there are no divers on there so I am not getting any feedback in the “diving with PA” department.
I am open to trying anything, I have seen many articles about not diving with anemia(s), but I hate to think there is really nothing that can be done. Does anyone dive successfully with PA, Sickle Cell or Megaloblastic anemia?? If so how do you prepare yourself? Thanks for your insight, time and consideration.

-Shanlee
 
It sounds like you have sustained significant and long-lasting neurological damage from the PA. On the bright side, you were eventually diagnosed properly and are receiving the appropriate treatment.

We should all be reminded that the underwater environment is an unforgiving place to be dealing with medical issues, particularly those of a neurological nature. Your dive experiences sound scary. I would think that the post-dive "fog," sluggishness, forgetfulness, and numbness would make you question whether diving was worth the risk/consequences.

I hope you are successful in finding a neurologist who is a better match for you.
If you'd like a referral to a dive-savvy neurologist, you can get one from Divers Alert Network. Call up their non-emergent helpline at 800-446-2671 or 919-684-2948, M-F, 8:30am-5:00pm EST.

Best of luck with everything.
 
Thank you bubbletrouble! I will call DAN in the morning about a referral. It is making me question the risks for sure - I guess I am just hoping for a miracle (silly I know). Thank you so very much for responding I really appreciate it!
 

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