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  • Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

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    Old 10-30-2007, 10:56 PM   #46
    alaska_free
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Ctsweet,

    The worst symptom for me is the neuropathy in my feet and the nausea. You will be suprised that some areas that are numb now, then magically the feeling comes back a couple weeks after the injections. The neurologist suggested switching over to IM but he said it would hurt more. I figure I will continue Subq. I may ask my dr next week what other areas I am allowed to use to give my stomach a break.

    catscandance,
    I had both of those tests you mentioned and they came back normal. Is it possible to have PA even if those test come back normal. Any other way to check for it. Right now, my neurologist is telling me that I am not absorbing it but they have no clue why. Also, I deal with alot of bruising, pale skin, dizzy, and bleed very easily.

    Tifferez,
    Once it gets all figure out, a big weight will come off your chest. When I found out I was relieved but at the same time angry. Try and get that book, it will fill in alot of the gaps.

    alaskafre

     
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    Old 10-30-2007, 11:21 PM   #47
    CTweet
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Wow sometimes I HATE living in Anchorage. I can't get into the neurologist until Nov 21. One of my girlfriends see's her and I am hoping she can use her long time patient status to slide me in earlier. We will see.

    AK Free: Can you describe what it feels like to have a numb stomach? Sometimes I get an erie cold feeling in my throat and stomach, like an ice cube in there. Bazarr. What is IM? I bruise really easily also. Same thing, they just appear out of nowhere and you can't remember hitting yourself. And when you DO hit yourself...yowza what a humdinger you get. I also have blood vessels that break really easily, especially in my hands. Those sting. My brain is so stupid tonight I couldnt help my son with fourth grade math. He had to fax it to his dad and do it "telephonically". Thank God for technology.

    Tifferz...do you get wierd sensations like that? In your body?

     
    Old 10-31-2007, 07:26 AM   #48
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Hi there alaska_free, yeah I do want to get that book that you mentioned here. I need to write it down and put it in my pocket book so I remember to look for it the next time I am out. Yeah, you are right .... once I know for sure I will be relieved BUT in the back of my head, I am still angry that my family doctors couldn't figure this out, my Gyno. couldn't figure this out, a cardiologist couldn't figure this out and an Endocrinologist couldn't have figured this out!! I go to a first appointment with a Hematologist and he says right away after going over everything that he thinks I May have Pernicious Anemia and was going to test me further. So, yeah I am mad that these other doctors hadn't figured it out. I was told "get off the percocet, quit smoking and quit drinkined iced tea" by the cardiologist. He also told me "oh your heart palps are normal, everyone gets them". He mad me ANGRY!! I was also mad that the Endo. Doctor couldn't figure it out or wouldn't test me further. But anyway .... yeah I will happy once we know for sure then can working on fixing it!

    Hi CTweet, I have a lot of symptoms!! But ..... you asked about the sensations in my body. I don't feel anything weird in my stomach other then I get full really fast from eating! I used to be able to out-eat my hubby but I haven't been able to do that in months. The only other sensations I get are in my hands and feet. I get the feeling like pins and needles kind of. It is almost like they are about to fall asleep, but they do not fully go to sleep. It is just the initial feeling you get before like your leg would fall asleep ya know what I mean? Only it doesn't go fully to sleep. Also I will get very light like vibrations occasionally .... and those are mostly in my hands. Those are the only sensations that I get. I am like you both .... I bruise wayyyy easy. I usually always have at least one bruise on me at all time. I have no idea where most of them come from. You are right though ... when you do bump into something .... that bruise you get it definitely a lot bigger than the ones you have no idea how they got there!

     
    Old 10-31-2007, 08:10 AM   #49
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Hi Tifferzz and Alaska_Free,

    The IFA test and PCA test are not conclusive tests for PA but it is a beginning. If you test pos. for IFA then that is a definite diagnosis for PA. The problem is though only 50 per cent of people who have PA develop antibodies to the Intrinsic Factor so even if you get a normal result, you could still have PA. Gastric Parietal Cells Antibodies, on the other hand are present in about 95 per cent of people with PA but they are also present in people who do not have PA but may have other autoimmune diseases, such as hyper/hypothyroidism. If you test pos. for PCA then further tests need to be run. Other tests for PA are serum gastrin (if the result is elevated that usually means PA) homocysteine, again if elevated could be PA or a folic deficiency. An endoscopy to look at the stomach, to look for PA and coeliac disease. It took 2 years for my daughter to get a diagnosis because her doctor at the time did not think to check b12 levels..but in a way, she is fortunate other tests were done when they were trying to find a diagnosis because it was discovered that she has a mitral valve prolapse, causing a mild heart murmur. Heart palpitations, heart murmurs are all associated with PA.

    Even when you start on injections, it still takes time for your body to recover and sometimes you may not notice any improvement for 3 to 6 months. It takes time to rebuild B12 reserves and that must happen before you begin to notice improvement. Recovery can be very up and down...like 2 steps forward and 1 step backwards but eventually the step backwards becomes smaller.

    Because PA is an autoimmune disease you are more susceptible to other autoimmune diseases such as hyper/hypothyroidism. The Pernicious Anaemia Society has stated that it is essential for any PA patient when having blood tests to be sure to include the Iron, Folate and TSH and thyroid antibodies tests as a means of managing PA. Some of our members have all 3 anaemias being PA, Iron, Folic and thyroidism. My daughter is fortunate that so far she just has the PA and folic anaemia.

    Regards,
    cats

     
    Old 10-31-2007, 11:09 AM   #50
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Cats:

    Very interesting information regarding other autoimmune disorders. I was severely hyperthyroid (I didn't know that was an autoimmune disorder) for years until I had a partial thyroidectomy in 2000. My Thyroid panels have been normal ever since. I ended up also have a SVT repair (superventricular Tachycardia) last year to almost the date (a few days before halloween). They said it was from damage caused by years of being hyperthyroid.

    I had a really bad night last night. Terrible pain in my URQ and into my back. My right arm was tingly all the way down to my thumb.My thumb buzzed and felt numb all at the same time. The pain still sucks today and I am trying to work and I just WISH I could see the new doc much sooner then the 21st. I couldnt even hold onto a folder this morning (regular folder you put into a hanging file folder). It just slipped out of my hand while I was talking with a coworker like it was water. I get more and more embarassed at work. Especially when I weave down the hall smacking into a wall...or leaving an office and hitting the door jamb....Is anyone else terrified at the thought of walking the neighborhood tonight to trick or treat with the kids?

    Tifferz and Ak Free: Perhaps we should start the "Big Bruise Foundation"

     
    Old 10-31-2007, 01:36 PM   #51
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    You give great information catscandance, thank you!! When I was reading your last post and you said about your daughter having "mitral valve prolapse", I remembered seeing that on my Echocardiogram report. I do not have a prolapse but it says something about "mild to possibly moderate mitral regurgitation with no evidence of mitral valve prolapse". Then it says something about "trace tricuspid regurgitation with PA pressures of 20 mmHg".

    I am wondering if I do have Prenicious Anemia and I wonder if that is causing those little things with my heart? I know it is not anything major, but I am wondering now that you said that about your daughter, I wonder if they are connected some how?? I also wonder if ..... I would have just listened to the doctors when alll these other tests were coming back normal and if I wouldn't have persisted that something else IS wrong .... could that lead to a valve prolapse all together?? All of the doctors did keep thinking it was a Thyroid problem .... I had the Thyroid tests run like 3-4 different times by the different doctors, but they still keep coming back normal. So they didn't know what was wrong with me. Thankfully for these message boards ... people started mentioning B12 and Ferritin ...... and they were telling me I should have these checked. That was when I had them tested and sure enough they were both Low.

    Ugghhhh I can't wait until next Wednesday to get my test results back!! I wonder if I can call and ask for copies of the blood work from the other day?? I wonder if they would give it to me or if they wouldn't since I am being seen next Wednesday to go over the results. Hrrmmm, maybe I could try and see if they will send me the copies awhile that way I know if I have PA or not before my appointment next week.

    Hey CTweet, I am all with ya on the "Big Bruise Foundation", LOL. I can't wait until I can see myself without ANY black and blue marks!! I am so used to them now .... it's just like ... oh there's another one, oh and there's one too or hrrrrmm, where did that one come from? It's kind of part of me now LOL.

     
    Old 10-31-2007, 03:26 PM   #52
    CTweet
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Tifferz
    No kidding! I can't ever remember a day I didn't have a bruise somewhere. I just ordered Could it be B12 from the bookstore. It should be here by Weds of next week. There is a pretty long exerpt online I found last weekend. We can't post other websites so just search it out with the title and it will come up.

    If you know what lab did your tests you could call them and as for a release of info to be faxed to you, fax it back and request your labs. I know my GP won't fax me my labs until he has read them and signed off on them. BUT you own them and the lab would have to give them to you. I have no patience so I know the drill

     
    Old 10-31-2007, 11:05 PM   #53
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Hi everyone,


    Ctsweet, the numb feeling is hard to describe. I just can't feel it. The first couple weeks, I would do the injections and wouldn't feel the needle. Now, it hurts. I also get a full quickly after a meal. I might get in a couple bites then stop. I lost alot of weight from this.

    Tifferez, I am still angry at my family dr. He knew of the symptoms that I have been experiencing but kept passing the buck to the gyn, pain dr and neurologist. I do not think he took me seriously and I have some serious doubts if I want him as my family dr. I figure, I would just stay with him until I move to Alaska this summer. When I told my family dr about problems that I was having with my heart racing, he stuck me on another medication.

    catscandance, I have noticed alot of ups and downs when starting the injections. It's been a balancing act. I did great when I was on them every day for a week. Then we went to 1 a week and lasted about 4 days. I had problems with nausea, severe burning pain in my feet, off balance/dizziness, weird vision stuff, dropping stuff and bladder accidents. I could tell when the B-12 level drops. It's almost scary. I would have 4 good days, then go down hill until the next shot.

    I am hoping they will send me to a hematologist. My family dr has requested more lab work because of the brusing and bleeding for several hours after blood draws. So, I get to go in for dart practice tomorrow. Depending on the results, I will be seeing a hematologist. At this point, with a b-12 deficiency and a prolong PTT and brusing, I have to wonder if this is connected to anemia.

    alaskafree

     
    Old 11-01-2007, 08:29 AM   #54
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    For any of you not doing the injections IM, and not beginning to see some signs of feeling better after a couple of weeks, I very strongly suggest doing them that way. The B-12 gets in deep into muscle tissue that way and you know for sure it's IN there. I know that some may say that subcutaneous is fine, but my 2 Drs. say not to do it that way. One is a Neuro. DH was a nurse years ago, and he was taught that way as well. I even asked the pharmacist, he said IM.

    And no, if done correctly the IM is not painful. He gives me mine in the hip and I barely feel them. In the arm I do more so, so now I only do the hip.

     
    Old 11-01-2007, 10:26 AM   #55
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Isis: I get them in the hiney, in the muscle. I haven't noticed any improvement yet but I am ONLY getting .3 a day....every night my husband looks at the needle and states "this is just NOT enough"

    Alaska: Can't you force a Hematologist referral? Can't you go to one yourself? Are you stuck with an HMO?

    Do me a favor...get this figured out BEFORE you get to Alaska (are you coming to Anchorage?) because I think the knowledge base in the lower 48 is better.
    I can relate to the full fast feeling. I can't eat much and I feel *ick* I hear you on the prescriptions. It seems that is all the docs want to do. "Here, take this pill and shut up". Last week I cleaned out my purse and I had about 7 pill bottles in there of various prescriptions. My last few appointments I have been telling them over and over..I don't WANT to be on pain medication, I don't WANT to feel this way. Stop giving me pills that do nothing and figure it out!

    Last edited by CTweet; 11-01-2007 at 10:27 AM.

     
    Old 11-01-2007, 06:24 PM   #56
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Hi Ctweet,

    I do not need a referal from my family dr to see the hematologist for the insurance company but the hematologist request one. They did do the labs today, so I am hoping we get the results soon. I suspect that we will have this figured out before I head up to Alaska. I will need to find a dr that will just take it over and manage it. I am 33 yrs old and on so many medications.

    Isis498, I have thought about doing IM but here is the catch, It would be hard for me to do them alone. Since I live alone, sq works out for me. I am so busy that I do not have the time to go to the family dr every week.

    alaskafree

     
    Old 11-01-2007, 08:15 PM   #57
    CTweet
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Alaska Free
    Well if this neurologist is any good that I am seeing on the 21st Ill let you know. One of my good friends says she "Rocks" so I am hoping for the best!

    Let us know what your labs are.
    I wonder why they requested a referral especially with your history. Wierd.

    I have been checking out a site called the Pernicious Anaemia Society (oversea's spells anemia differently?) I am going to register there under the same screen name. I am 38 and on TONS of meds too....if they will take me they should take you being 5 years younger LOL So funny....I had been thinking the last few years, that I have been feeling like this because I am "middle aged". What a hoot huh?

    Ctweet

    Last edited by CTweet; 11-01-2007 at 09:01 PM.

     
    Old 11-06-2007, 11:26 PM   #58
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Hey there alaska_free, I was just reading the board and then I remembered that you said you were going for your Labs. the other day. Just checking to see how you made out?

    CTweet, that Pernicious Anaemia Society site is a good site. Someone mentioned it here and I found it ..... it is definitely a good site to read and learn stuff from! Ya know?? That is really weird about when you feel like we do .... how we can blame it on "old age" or "middle age". I was doing the same EXACT thing earlier in the year. I kept telling myself and other people that I must be feeling the way I feel because I am getting older. That is what I was thinking it was at first!! I am 34 years old by the way .... after I started getting a lot more symptoms I was like .... hrrrrmmmm, maybe this is not "old age/middle age" after all, then I finally went to the docs. It is definitely weird how we say that!! I have heard of lots of people saying the same thing with Anemia and B12 issues.

     
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