I stumbled across this page during one of my many google symptom searches hoping to find someone with a similar experience.
I’m 34. I have three children and lead a very active life. I run a few miles twice per week and workout in the gym two to three days per week. Besides having acid reflux and IBS, I’m in great health. I manage the IBS with diet modification and the reflux was managed with protonix for almost 2 years until my doctor took me off this August.
In June, I hurt my back lifting too heavy in the gym. The pain lasted two days. I took it easy and was back to my normal self.
In August, I picked up my 2 year old and felt pain in the same place that I hurt my back in the gym. Again, two days of minor discomfort, and I was back to myself.
About 3 days after this, my world completely changed. I experienced extreme fatigue. I was having to nap every day or rest on my couch most the of the day. Small tasks left me feeling winded and my heart pounding. My heart rate became elevated while sedentary or just doing routine things in my house. I never felt rested/refreshed. I was no longer able to exercise due to the breathlessness, pounding heart, and chest heaviness I experienced. I started getting headaches. Nothing unbearable (I had migraines in my early 20s and these were nothing compared to those). I became dizzy/lightheaded. My vision felt like it was out of focus or like my contact lenses were not clear. This would come and go quickly. My legs started going numb starting with my big toe and working upwards to my thigh. My right leg was mostly affected but occasionally my left foot/calf would go numb. This was not the pins and needles of a limb falling asleep but more tingly. I experienced all of these things very abruptly and all once it seemed. I have anxiety that I’ve had my entire adult life. I manage it with regular sleep and exercise, but needless to say it was heightened with all of these new and frightening symptoms.
I made an appointment with a family doctor, but the soonest available was two weeks away. Over those two weeks, I ended up in the ER three times. The first time with leg numbness, facial numbness, headache, and rapid heart rate. A CT and EKG were done and both were normal. The ER doctor diagnosed it as a migraine and told me I needed to take some B12. The second time I experienced numbness in my right leg for 6 hours along with muscle weakness on that side. A CT and chest X-ray were done and both were normal. The ER doctor told me it was anxiety. The third time I experienced significant numbness in my right leg while driving my daughter to school. So much so that I didn’t feel it was safe to drive home. After a MRI of my thoracic and lumbar spine came back normal, that ER doctor said anxiety. Again, I’ve had anxiety for over 12 years and never experienced anything like these symptoms as a result of it. I left discouraged and scared of what was happening with my body. My mother moved in with us to help because I was barely functioning.
I finally got in with the family doctor who ran many tests. Everything came back normal. My b12 level was 274. He said it was in the normal range, but I persisted with wanting injections after doing my own research. He agreed and started me on weekly injections. I was not checked for pernicious anemia. The doctor said I likely have it due to the protonix I was taking and the fact that I have IBS. The first two injections gave me some energy but I didn’t notice many other changes. After the third one, the numbness and tingling were completely gone. I was feeling more like myself. I felt even better with the 4th, 5th, and 6th injection. Then my doctor wanted me to start spacing them out to monthly. I made it 10 days before the numbness returned. I did another injection thinking maybe I just wasn’t quite ready for them to be spread out. I tried going two weeks, but around 9 days, the tingling returned. My doctor referred me to a neurologist and I continued weekly injections until that appointment. Even with resuming the weekly injections, the strange feelings in my legs persisted.
The neurologist ordered a MRI of the brain, a vision study, and a EMG/nerve conduction study. He said he thinks low b12 could be playing a role but he’s “not convinced” it’s responsible for the numbness/tingling in my legs. He said he does not believe it’s MS or a brain tumor and that it could possibly be migraine related. I’ve had the MRI and am waiting on my appointments for the other two tests.
I don’t know why I felt so much better and like I was getting back to my old self for a few weeks with the injections, only for the issues to return. I felt like the b12 was really helping. The last few days I’ve also experienced muscle cramps in my calves and right thigh and my breathlessness and rapid heart rate have returned. My doctor ordered an ultrasound of my leg which ruled out a clot. I also feel like my skin is crawling on my legs and when I kneel down and stand up it feels like the blood is running down my legs. My legs also feel wet sometimes even though they’re not.
I apologize for the novel post. I feel like I’m grasping at any chance to find someone or some information that can help me understand what’s happening to me. I greatly appreciate any input or suggestions on where to go from here.
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Ashley820
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Don't despair. Keep seeking a diagnosis for yourself. Have you had a test for antibodies to intrinsic factor to determine if you have pernicious anemia? Your doctor may consider B12 of 274 normal range but Mayo clinic considers anything below 400 low. If you took B12 before the blood draw that could affect the results. Has your blood been examined for macrocytes? That is when the blood can't carry enough oxygen and can cause breathlessness and other symptoms. It can take treatment a long time to work well. It took me almost 2 years to feel recovered and I still count the days until my next injection.
I was not tested for intrinsic factor or macrocytes. My doctor just said he “assumes” I have PA due to having IBS and taking a proton pump inhibitor for almost 2 years.
Your story sounds so typical of a B12D that gets ignored too long.
There are 4x types of B12 medication. Cyano is the least expensive and is used in the USA, Hydroxo is next and is used in the UK, Methyl is next and is used in Saudi Arabia and Adenosyl is last and is only used for special treatments.
The first two are stable analogs that get converted into the second two in the body. These are the “active” forms. Methyl is susceptible to UV light.
You will also need folic acid, whatever you can tolerate, up to 5 mg max per day, to support nerve repair. It is important to get the B12 level set first because folic acid can mask the neurological damage while making you feel more energetic.
You also need a daily multivitamin to support the metabolism as minerals and metals get used up in the body when you start of B12.
Anxiety is one of the psychological (mind) symptoms that occurs from neurological (brain) damage. The mind (like software in a computer) is trying to function in a deteriorating brain (life hardware in a computer). These analogies are too simple but for a non-medically trained engineer, they work for me,
The stress you are having also uses up your B12 and makes matters seem worse which also contributes to your anxiety. This leads to more stress and so is a downward spiral. Eliminating stress is essential to getting better. Only you will know if having your mother help is making you more stressed as well.
I find in addition to my injections (weekly cyano) I need methyl sublinguals to fill in for stressful points in my day. I take extra methyl sublinguals about 30 minutes before meetings at work and during my commute.
I spread my folic acid out through the day for the same reason.
To get some control back and reduce the worry and stress, start a logbook of all your symptoms, food and medication.
Some foods like gluten and dairy (casein protein) can impact the gut which then impacts the recycling of B12.
After starting B12, you may also see new counterintuitive symptoms like pain or increased anxiety show up. You seem to get worse before getting better. These symptoms arise from the neurological repair as the brain gets stronger signals back from the body and the mind thinks things are getting worse. These seem very real but are an illusion before the brain recalibrates to the stronger signals which takes a couple of days.
Keep doing your exercises as this helps the brain figure things out and recalibrate faster. Exercises for the brain are harder but there are short term memory loss tests on the internet that stimulate parts of the brain. Memory games like Mahjong can also stimulate the brain.
Try to assess a daily severity score for each of your symptoms and record in your logbook. You will need these in six months to compare to as nerve repair is extremely slow.
Once you are on B12 injections, it is like being on a roller coaster ride as day to day comparison just don’t work as you feel better one day and worse the next. But if you compare that same day after the jab to the same day in a previous cycle you can monitor improvement so reset the day counter to day zero in your logbook one the day of each jab.
Thank you for this info! This explains so much about my anxiety. It’s worsened a lot in the last year in frequency and severity. This gives me hope that if I continue with the injections that I’ll see an improvement with that.
I’m currently on a multivitamin daily but haven’t started additional folic acid because I read to get the b12 symptoms under control first.
My mother has gone home now so no additional stress there. I’ve just been worried over the not knowing what’s going on with my body. I feel like once they rule out anything more sinister, I will be able to relax more.
What is sublingual methyl? I’m going to get some of that if possible ASAP.
I’m dairy free for IBS, but will explore other dietary contributors. The log is also a really helpful idea. Just knowing that one day can feel different from the next or I could feel worse before better gives me hope.
I get my methyl sublinguals at Costco (USA). But most vitamin shops have them as dietary supplements.
They go under your tongue and dissolve and are absorbed directly into the blood steam by the many blood vessels under your tongue (sub-lingual = under the tongue).
The ones I get come as 5000 mcg tablets. I typically pop 2x under my tongue about 30 minutes before meetings (any stress) to clear my head and get both sides of my brain working together. These help clear my residual brain fog.
They fill in between my weekly cyano injections as and when I need them.
Proton pump inhibitors can actually cause IBS as can Helibactor Pylori. I was diagnosed with IBS but once I was treated for HPylori it was rare. Good luck with your results.
I'm wondering if the 'worse before it gets better' part can also apply to heart palpitations? I just received my 3rd shot on Thursday and towards the end of the day today, my heart started to pound again. And then tonight, just laying in bed trying to go to sleep my heart rate went up to about 80-89bpm and stayed there for about an hour or so. I know this because I wear a Fitbit and it keeps track of your heart rate. Could this be related to the B12 or could it be something else that I may need to contact my cardiologist about. All these heart related symptoms can be so unnerving and scary.
I totally understand. I have an Apple Watch that I’ve worn for 3 years consistently so I’m very aware of what my normal is. My heart rate shoots up when sedentary or when I’m doing easy tasks. The heart related symptoms are very scary. I used to be able to run 4 miles without my heart rate going over 150. Today I mopped my kitchen and it was 130. When my numbness was improving after about the 3rd injection, my other symptoms were as well. Lately I’ve been regressing with both though. I hope this is just part of the “worse before better”.
I know, me too... It's so upsetting.. just laying in bed and then heart rate keeps going up. You feel like, " should I go to the ER? Is it serious? " So scary. You don't want to over react if its B12 related, but don't want to under react if there's something serious going on! So sorry your having a hard time with this too. One day, or hour at a time, right?
The reason I ask is that my going downhill due to B12d (I have PA) was so gradual that I almost didn’t notice it. I just thought I was getting older/being lazy/lacking motivation/tired/all of the above.
However, 10 years previously I had Graves’ disease (overactive thyroid) and that was much more sudden and more as you have described. One week I ran a marathon in 3.47 and 2 or 3 weeks later I couldn’t run to the end of the road. Too breathless which I thought was asthma. Hot flushes on completing the smallest bit of exercise (eg 1 squat) which I thought was early menopause. Feeling stress, well I had 4 children.... Eating loads which I hadn’t noticed as I kept up the same intake even though I was no longer running 25-30 miles a week (weight stayed the same). But what made the penny drop for both me and my GP was my high heart rate. I tested it in the gym when running for 10 minutes only at well below my marathon pace so I’d have expected a heart rate of around 90 but it was 180, higher than my max HR and explained why I couldn’t run to the end of the road!
So it’s just a thought but I’d check your thyroid.
Thyroid levels were checked and were all within “normal” range. My doctor did say before testing them that it sounded like a thyroid issue. He was surprised when they were normal but said he’d keep monitoring them. My mother had Graves and then went hypo some years after. Same thing with my maternal grandmother so there’s some history there worth watching.
I’m not sure how often you inject Colorado76 but I inject 3 times per week and find since I started I need the epsom salt baths for the magnesium. I do about 2 - 3 per week. I cant handle taking it orally so that along with the b12 helped the heart rate. There are some other vitamins that I found I needed. Magnesium being one of them and potassium was another that kept dipping on me. I just upped my orange juice, banana or avocado intake. Be sure to check your folate and total iron as well. That can also cause a heart rate issue.
It could be that you need them more often. Before I started the schedule I’m on the doctor wanted me to do weekly injections. After 4 days I would feel worse than I ever did. I did daily for 2 weeks and then every other day for a week and I feel my best on the schedule I’m on now.
I get a symptom of an apparent increased heart rate as I’m falling off to sleep and can wake in a panic. I simply need to feel my pulse to realize that it isn’t racing and my brain calms down.
As I learn more about the brain, I’m beginning to understand more about the limbic system and the way chemicals and hormones work.
The cortex part of the brain may only get feedback from body and, in the presence of neurological damage, may get wrong or inaccurate signals and make the wrong determination of what is going on causing the illusion of panic in my case.
If the heart rate was actually increasing, then the limbic system is cranking out the chemicals to make it do that.
It's so weird isn't it?! That's very interesting... Last night my 'elevated' heart rate lasted for about 6 hours, until 3am. When I say elevated, it was from 76-89bpm. When I'm in bed reading or watching TV, my resting rate is around 60-66. Was just bizarre. And another thing that happened was that it felt like I kept getting a shot of adrenaline in my heart every 30-60 seconds, like someone put their foot on the gas pedal and took it off and kept doing it over and over. So very unsettling. I didn't think it was anxiety because it lasted so long, but who knows! Feel like I don't know anything lately, learning about how complex this all is, just don't know anymore. Thanks for the insight, I appreciate it!
hi and welcome sorry you are experiencing all these symptoms. to put your mind at ease normal heart rate is 60-100, I go to the ER when mine goes into 200- 300 range and they have to stop my heart to get it to beat normal again the pain and fear is on a scale all of its own I've had it done about 48 times now so if it lasts for 15 min or more I have someone drive, to the ER. the pins and needle sensation can be a number of things from B12 to pinched nerve in your back that's why they need to rule out a number of things it's a long road you will travel down and one thing I've learned is patience and keep doing your own research good luck and keep us informed and remember we don't judge and always here to help if we can and alot of ppl on here know more than some Dr.s because they only covered it for 15 mins in med school and don't keep up with the research.
Thank you so much for your reply, I appreciate it, That's very scary for your heart rate to go as high as your experiencing, I'm so sorry! Do you have a good cardiologist? My brother has idiopathic tachycardia and he had a cardiac arrest at age 20, he has a defibrillator and I'm sure it's saved his life. It almost sounds like you have something similar. Of course I don't know your medical history, but if it keeps happening, I would think that they would consider a defribrillator for you too. I can only imagine the fear that must bring you.
I do get nervous about things like this because of my brothers history and genetic defect and wonder if it's something I might have too. Odds are I don't since I haven't had any episodes like my brother experienced, I was told that my my cardiologist. But I feel I should at least run by him what happened last night just to be safe. Thank you for your kind words, you take care too!
Unfortunately, I have yet to find any traditional medical practitioner with even a basic understanding of PA and/or B12d, neurologists included. (I was fortunate enough to find a functional practitioner with a decent understanding but I still had to do my own research to educate her a bit more on proper treatment for neuro involvement).
If you have seen improvement with B12 injections, then you have proven it to be of value which is in itself a trial of the treatment with a favorable outcome.
The PAS website has a lot of literature available for free and even more with membership. A lot of the info is designed to help educate medical professionals.
If you look at the replies from sleepybunny, you will see very many links to many scientific and medical resources that may be of assistance:
Thank you for this info! I’m going to check out the links you included. I really hope my doctors will be open-minded about the literature I bring, but if not, I’ll keep searching until I find a doctor who is.
Your story is the first I have read that sounds almost identical to mine and I have to say it makes me want to cry. I have had IBS since my teens. While everyone shares many of the same symptoms, mine started with back pain almost 8 years ago. It wasn’t until tonight that I truly believe it has something to do with b12d. I used to wonder if it could somehow have been a huge contributing factor in becoming b12 deficient but honestly I gave up trying to figure out why I was deficient. I’m in Canada and it seems it’s just not important to know the cause. They (docs) are just interested in treating it and moving on since it’s the same treatment regardless.
I was 36 at the time and have NEVER had back issues or pain. I went to put a bag (a very light bag) of garbage on the porch to bring to the trash cans later. I was just about to bend down to place it on the ground when all of a sudden, what felt like an electrical shock stopped me from moving a muscle. I had this intense pain in my lower back that was so severe and the feeling of my legs not being able to carry me that I used my counter top to get myself to the stairs where I laid until my husband came home. I was in bed for 6 weeks. It turned out I had a herniated disc but was told it wasn’t severe enough to cause that “kind” of pain. This would interfere with life over the years and continues to do so.
That is how it all began and it wasn’t until I was 41 that I had to beg our crappy medical system to test my b12 level and treat me “properly” according to the research that I had done.
I was in hospital for 4 days where they all thought I had lost my mind. Can’t say that I blamed them at the time as I was having severe anxiety every time my heart raced. It was so bad it would wake me up at night. My blood pressure was all over the place. It was so high one night I went to the hospital in an ambulance. I couldn’t walk from the couch to my dishwasher and take a couple of dishes out before I had to go back to the couch because I couldn’t catch my breath and felt as though I was about to faint. My couch is literally 20 feet from my dishwasher 😳. My eye sight was blurry and all of a sudden I needed glasses. Numbness in all of my extremities and it was the first to go away after starting injections and oddly enough if I wait more than 2 days between injections it’s the first symptom to come back. I’ve also realized that if I inject daily I have almost no back pain! I used to believe it was 2 separate issues and now I think it’s all in the same. I have been tested for everything. Cancer, blood clots as I was coughing like crazy at the beginning of all of this and had tremendous chest pain, MS etc. I can’t imagine the amount of money it would have cost to cover the tests that they had put me through. I worked at the hospital so I think they felt that they would do every year imaginable (literally) to figure it out. Except everything came back normal. Yet I had to beg them for a small little blood test. It’s been a struggle and a battle at times but one thing I’ve learned is you truly are your best doctor when it comes to b12. If it works then you have your answer.
They (docs) still aren’t convinced it was the b12 even after I told them of shovelling my entire driveway of snow immediately following my 3rd injection. Of course I was in need of another injection but I did it and didn’t feel like I was going to die!
Our stories definitely are very similar. After reading all these replies, it gives me hope that this is what’s going on with my body. I’m so sorry for all that you went through and how long it took to get you the treatment you needed. I have a feeling it’s definitely going to take convincing on my part (or finding a new primary doctor) to continue to injections at the frequency that I need them. We have very expensive private insurance because my husband is self-employed, but thankfully with that comes a low deductible (which I met after my first ER trip) otherwise the amount of money we’d owe in medical bills would be insane 😕
I’m not sure what part of the world you are from but I buy mine over the counter and self inject. No doctor on this earth would agree to inject as often as many of us do. If we didn’t take our health into our own hands who knows where we’d all be.
Good luck to you and I hope you start feeling better soon😊
Let me first clarify, I am sharing my experience here and what has worked for me may not work for you but hope my experience can help you in understanding your condition better.
First, there is a paradox between acid reflux and B12 deficiency. When my B12 was around 155, my reflux symptoms were unbearable. Also, more you use PPI's, less B12 your body synthesis.
The moment I started using B12 supplement (shots and oral), my reflux symptoms improved drastically, I am not on PPI's anymore.
I have similar challenges like Anxiety, acid reflux and IBS etc all my life.
And I have been through all kind of tests (you name it) but never got any concrete diagnosis.
Last year when my symptoms became worse like difficulty walking, Dizziness, blurry vision, bad reflux, memory issues, shortness of breath and faster heart rate. My neurologist suggested B12 test, and mine came out as 155.
Dr. intially suggested 1500 MCG B12 tablet daily and I didn't see much improvement later I was put on 500 MCG injection (7 shots) every alternate days, I still didn't see much improvement again.
Then I took a conscious decision (post reading lot of blogs) of continuing injection till my symptoms improve, I took around 12 injections (500 MCG ) daily and saw a drastic improvement in every symptoms I had.
Now I take 2 injections in every 2 months and it feels much better. I am still off and on taking B12 oral supplement ( with folic acid and iron)
Now I don't want anyone to follow my advise blindly but this has worked for me and it's still working.
Now mostly my B12 is around or above 1500 and let me tell you once my B12 got reduced to 780 and I started experiencing some of my symptoms again. So as a thumb rule, I try to keep it over 1000.
My conclusion is that most of the symptom I had were because of B12 and only when it got reduced to 155, I started experiencing severe symptoms. As normally it take years to develop B12 deficiency as lever offsets the B12 requirement for sometime.
Wow! Since starting the B12 injections, my acid reflux has been nearly non-existent. I still have issues with some foods, but it’s no where near what it was. I would’ve never connected the two if you hadn’t mentioned it in your post. And to think I was on a PPI for nearly two years and that was likely not even the root issue 😕 My IBS, reflux, and anxiety have all worsened in the last couple years, but significantly in the last year. The IBS has improved some since I started injections, but I’m also very careful with my diet. I’m interested to see how that plays out long term.
Did you doctor give you enough B12 to inject daily? Mine has only given me 5 1000mg vials per month. I wish I had access to more just to see if more frequent injections would improve my symptoms even more.
Dr follow there age old practice - 6 shots of B12 (1000 mg) every alternate day and then they will put you on oral supplements to maintain b12 levels, after 2-3 month they will give you next shot (1000mcg) if you have PA.
In my case I was put on 1500 methylcobal daily oral supplement first and as there was very less improvement, Dr advised me 7 (500 MCG methylcobal) shots every alternate day.
While my condition improved but still the progress was very slow. Then I decided to take 500 MCG injections daily and after 12 injections, I saw great diff in energy level.
Dr never advised me for these injections and I experimented on myself post reading lot of reviews and online material.
I felt top of the world when my B12 levels were over 2000 ( I know it's too high)
That is why I mentioned it specifically that what worked for me, may not work for others, but as per my experience and what I read it has worked for lot of people.
Also a piece of advise for reflux, don't drink water 1 hour before and 2 hour after your meal ( it will do magic in few days).
Hope this helps and all the best in your journey. In B12 deficiency, patience is the key.
Hi Ashley,before I was diagnosed with pernicious anaemia I was diagnosed with anaemia which are two different things I believe, but in both cases I was so tired I couldn’t function, I felt when people were speaking to me they were draining my energy and I could only speak for a short while, my hair began to fall out, I lost a lot of weight and had big bruises which appeared from nowhere, the doctor thought I had lukeamia but after blood test it was pernicious anaemia, I then began the b12 injections weekly but only for 6 weeks and I have an injection every 10 weeks,, I think it should be more but it seems to be all that the doctors want to give,, my problem is that it seems to be a one size fits all mentality in the medical world and I think that this needs to be addressed,, I also suffer from ibs and anxiety, maybe they go hand in hand, I’m not sure, I meditate every day which seems to help,, before I was diagnosed I suffered from blisters in my mouth which would appear after eating anything acidic , I think a lot of the symptoms are brought on by anxiety but I’m not sure,, I wish you luck in trying to get to the bottom of it...
Hi Ashley820 & welcome to this amazing group that I also found when I was desperately looking for answers.
So sorry that you're struggling & have been through such a long hard struggle.
Hopefully the many similarities from the replies here have helped ease your worries a little & I hope you get the help you need sooner rather than later!
The wetness in your legs I experienced in my feet, thinking I'd stepped in something wet, along with the initial tingling which I described as the sensation after a nettle sting was easing, along with burning. Even after self Injecting every other day, the tingling/burning then turned to walking on pebbles/glass.
A Neurologist after nerve tests diagnosed small fibre Neuropathy due to nerve damage from PA, the advice was to keep on Injecting & in time the B12 may heal the nerves.
This is now improving greatly.
Many other symptoms I haven't mentioned have gone & or are easing.
The one that still really frustrates me is the fatigue. Just simple tasks I've taken for granted totally drain me.
I hope what you've seen from the many replies gives you hope & now you know you're not on your own & you're not a hypocondriac as many of us here feel like!
I read the post insider.com/drinking-celery she didn’t juice the celery she blended it also added water that is not the directions if she was serious about giving it a try why did she not do it as shown doing it her way will make you gag
The reason I ask people to research something is to let them make there own minds up about weather the suggestion may or may not improve there health.
People have been suffering with chronic health issues and it’s getting worse and no answers forthcoming from medical science as yet only symptoms relief and if you are going to use instagram blogs like (insider.com/drinking celery-) it would be helpful if you had researched drinking celery juice you would have realised this was not the way it should be done .
If you click on my name at top of this reply it will take you to my page.
Click on the "replies" tab and it will show you some of my recent replies on this forum which are usually detailed and may have some useful info for you.
I have been through most of your symtoms,plus L.Hermittes sign, all got worse before they got better. If you have neurological symptoms , a well informed European doctor will give you injections of Hydroxo cobalamin every second day. you can't overdose,and very cheap to produce!
Feeling of wetness on legs or feet is a symptom? After two years of treatment I'm still finding out that things I thought were normal are B12 related! I had almost every symptom I've read about and I have no idea how to tell if I'm healthy because I clearly have no idea what healthy is and have not known for decades!!If I could find a specialist who knew about PA I would for sure go see one.
I didn’t mention in my original post, but does anyone else have issues with coldness or exercise causing numbness and tingling?
When I get cold, I notice that it gets worse and usually improves once I put on socks or get under a blanket to warm up.
Also, I did light exercise for the first time this week and as soon as I started, my foot and leg started tingling and continued until about 20 minutes after I stopped.
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Confused anxious and looking for peace of mind.
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Im new here...looking for advice on diagnosis and treatment
