Shanlee33
New
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 issues 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 couldnt focus and felt very confused. My eye sight was strained and I had significant ringing in my ears that wouldnt 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 didnt I went to a neurologist instead, I dont 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 didnt 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 hadnt 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 Bs. 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 dont 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 dont 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 dont 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
I am new to diving and I love it! So I am hoping that if I provide a brief overview of the issues 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 couldnt focus and felt very confused. My eye sight was strained and I had significant ringing in my ears that wouldnt 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 didnt I went to a neurologist instead, I dont 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 didnt 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 hadnt 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 Bs. 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 dont 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 dont 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 dont 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
