Wicked PA

[Pappup1]

Recently diagnosed with PA. B12 was immeasurable, MMA high, MCV 119, platelets low, WBCs low, HGB low and RBCs low. Bilirubin was elevated. I am four months into treatment and was better functioning prior to injections. At least from a neuropathy, muscle pain and back pain perspective. Of course my energy is vastly improved but my mobility is suffering.

My symptoms started a year ago. I had a panic attack. I am the calmest person under the sun and this was a total shock as I had never experienced anything like it. After the panic attack I had constant, debilitating anxiety followed by chest pain, persistent tachycardia (even at rest) and what I now assume to be spleen pain. Multiple visits to my Dr were dismissed as "brain chemicals" with scripts for Zoloft and Xanax. This persisted for 6 months during which I had one episode of what felt like my scalp was being electrocuted.

After 6 months I started to become anemic because extreme fatigue hit me hard. I struggled to work, fell asleep sitting up for 12-16 hrs at a time. The anxiety was at bay now because I could not stay awake.

Next came neuropathy. Moved from my feet to knee level quickly. I was deteriorating fast. Again my Dr was of no help. My anemia was in high gear at this point and I was very winded, my extremities would mottle and appeared cyanotic.

Almost simultaneously came stomach issues. I had watery stools that were putrid yellow. To the ER I went. My labs were awful and my B12 def was found. Started injections weekly for 5 wks and continued to decline neurologically. My neuropathy progressed into my thighs and buttocks along with new spasticity and back pain. I lost 40 lbs quickly and found myself in bed....a lot! I have never felt so close to death.

Now 4 1/2 months into treatment I have an appetite improvement and feel that I can maintain my weight. The neuropathy is unchanged and continues to be my daily struggle. I see Neuro soon for likely sub-acute combined degeneration of my spinal cord.

This, by far, has been the worst thing I have ever experienced. My quality of life is poor although I do manage to work ( while finding quiet corners to cry) most days. I try to keep perspective. I know I am lucky to be walking (although so painful).

Who knew symptoms of anxiety, poor appetite, persistent bloating, neuropathy, anemia, cardiac issues, hair loss, skin discoloration and the many other things I experienced were all one big B12 problem. I believe my first real symptom of anxiety clouded my views. I never experienced any mental fog or cognitive impairment but I am a medical professional and should have seen it. Hindsight is always 20/20 as they say.

My story is actually more detailed than this post. I am such an advocate of B12 testing now. I am sure my friends and relatives are sick of me. I have reached my out of pocket limit with insurance. Such a simple thing with atrocious consequences if not found quickly.

My neuropathy started approx 3-4 months prior to my first injection. I am hoping it will eventually respond to treatment.

I will end here as I know this post is long.

[pitney]

So sorry you have been so unwell,I know what alot of those symptoms feel like and how unpleasant they can be having gone through about 3 years of feeling like every day was my last. It can be a long hard road back to feeling reasonable and even then some days are better than others, but remember everyone is different and some people seem to respond quicker to treatment than others, keep trying to find what works best for you in terms of treatment and eat the best diet that you can and I hope you start to improve soon.

Good luck and very best wishes

[Pappup1 in reply to pitney]

Thanks so much. It is nice to connect with others as my friends question whether any of this is real.

My sister has been a tremendous help. She sends me supplies from Amazon and has helped clean my home. She has had a gastric bypass and now I have PA. I have stressed to her how at risk she is and that she absolutely does not want to go through an extreme def.

[Katherine123]

You could have written me Pappup! enlarged blood cells too. I am 2 months into treatment but I have learnt to self inject. I had to self inject daily for 5 weeks, every other day for 2 weeks and have just gone onto every 3rd day now for the last week. Lots of things cleared up quite quickly, but my peripheral neuropathy has not, balance issues no :0( neither my brain fog (although a tiny bit better), nor my headaches, energy levels, or hair falling. I have just found out I have low morning and daytime cortisol, I have also been badly treated long term hypothyroid.

[Pappup1 in reply to Katherine123]

Yes, my Dr said I can self inject. His office is 4 miles from a friend's house so I get my injections while visiting her. I will eventually do my own though. They charge my insurance $79 for the Nurse visit and additional for the injection.

My neuropathy has maybe changed a little. The difference is so subtle I wonder if it is real. I am finding some tasks a little easier. For instance, bathing (showers I could manage but a bath is my preference), standing to dry my hair and light housework. I am not great at these things but even last month the struggle was more difficult.

Another issue for me is general neuromuscular weakness. I am reasonably tolerant of pain but pain coupled with the weakness is another story.

I hope u eventually get some relief. How long did you have neuropathy prior to treatment? I also refuse medications despite the constant push by physicians to take Gabapentin.

I had lost weight rapidly and was in such distress I remained supine in bed when at home. I initially was having to call out sick from work more often which meant more time in bed. My bones were digging into the bed and the back pain was likely a result of the situation along with the fact weight changes can affect spine stability. I have found as my weight has stabilized and I am able to work more my back pain is better along with hip pain. I am a side sleeper. Lying in bed constantly is an enemy to recovery but it was the only way I had any relief from the leg pain and pulling.

Also, last night I slept my first full night since March. For 3 months I averaged 3-4 hrs a night if I was lucky.

[fbirder in reply to Pappup1]

I don’t think I could put up with my neuropathy if it weren’t for gabapentin.

Have you been seen by a neurologist and had nerve conduction studies done? There are over 80 possible causes of peripheral neuropathy. You may be assuming it’s B12 when it could be something else.

[Katherine123 in reply to Pappup1]

It is awful Pappup1 mine is mainly feet and legs, it did use to feel like I was walking on the bare bones of my feet. It got far worse when I first started the B12 injections the pain was awful but I toughed it out as I was aware that things can get a lot worse first of all. I now know your head has a lot to do with balance as I kept having a falling sensation in my head as if I was going head first over a cliff(even though I was standing upright in my living room. Numbness and weakness from my head all the way down the left side of my body. Numbness and weakness in the left side of my face got me running to a mirror and smiling at myself to see if I was having a stroke. These symptoms have largely gone now. Still have left side weakness and my feet still hurt a bit but not like before. The electric shock zaps in my brain are still there but only mainly of a night now as I am falling asleep.

I am 2 months into self injecting and I can see a difference. My energy levels are still not great but I do have low thyroid and low cortisol too. My brain is working so much better I can even make plans and put things into place for my future. I had no future before and my brain felt like it was just stuck. I am now tolerating being around people where I withdrew from people before, not enough brain energy to deal with them socially.

[Lrcjvl]

I have had a similar experience. Why are primary care doctors so clueless about b12 def testing? I had to switch medical systems to have my new pcp take my history and finally, finally get some help.

[Pappup1 in reply to Lrcjvl]

Who knows. My Dr and I had a 28-29 yr relationship and never once during this time had I ever complained of anxiety or stress. Why he was so hesitant to believe me I do not know. My MCV at that time was 103 with no anemia. I questioned it and he blew it off as nothing. I was in such a state with this newly acquired anxiety disorder I did not pursue or fight since it would cause more stress for me. So odd, this was nothing like me. I would have never accepted his answer in any other scenario.

I often wonder if male physicians are sometimes gender bias. My new Dr is quite passive but the ER did all the work for him.

Best of luck to you.

[Cherylclaire Forum Support]

You're wrong, Pappup- your post is not too long at all. Not long enough if you ask me (never a lover of the snappy soundbite). You have left me wondering about a lot of things:

At what level B12 becomes immeasurable.

What type of medical professional you are.

How you are managing to work at all.

Unsure of your current treatment regime (after loading doses).

I certainly got a lot worse before getting any better, and that took a long time. I think there is more improvement still to be had. I had got to the stage where I was finding it hard to remain upright at the bus-stop on the way in to work, and used the bus-stop sign to prop me up- ended up with having to have 15 months off work. I'm now back on a phased return- will be 2 days a week in September- and although this has cost me plenty, I was far too ill to worry.

Others here can give you sound advice, and links to read. All I can give you is heartfelt support, and hope. This is scarey, and like pitney says, there will be blips even when you are getting some results... expect them and don't get disheartened by that. Take good care of yourself and keep a watchful eye out.

Hair loss can also be linked to thyroid/ folate deficiencies, both of which are commonly associated with B12 deficiency. Get ferritin and vitamin D levels checked too, in case. I've been advised to keep ferritin and folate in higher end of range to help B12, and can't do this at all unless supplementing, have got osteoporosis of spine and thyroid starting to show signs of struggling too (although in range). Keep copies of results so you can monitor any changes- and catch problems early.

Stay in touch- there are people here that can help. Their kindness alone helps keep you on track.

[Pappup1 in reply to Cherylclaire]

Hi, I suppose it was the particular lab they used. They report <50 and not an exact number. Clearly, I had some but not an actual number. My folate and ferritin are normal. Also, my kidneys and liver enzymes are normal along with my thyroid. My Vit D is low but I already knew that.

My MMA was not obtained until 1 1/2 months after treatment started and measured high ( although I am sure it was much higher before treatment).

My parietal cell antibodies were positive at 55.

I am a Registered Respiratory Therapist and Pulmonary Function Tech. Oxygenation is my game so I should have known. I kept thinking I had cardiac/ circulation issues unrelated to B12. Like I said my anxiety clouded my views. I am able to work because the hospital I work for opened a satellite hospital with less than 100 beds. I had luckily transferred from staffing at a 1000 bed trauma center ( I worked in pediatric/ neonatal) to this new satellite. It is very new and slow. I also staff there but I do all their PFT/ exercise testing and can sit most of my shift. Now I work 8 hrs and no longer 12s. I thank God I am there otherwise I would have never been able to work. At the 1000 bed hospital we were so, so busy and I was on my feet moving all the time. Fortunately for me I work alone and when I need to have my crying spells they go unnoticed. Also my boss is very understanding and blocks my schedule for the first 2 hrs of the day to allow me some time to recover from the drive and in case I decide I need to return home.

I live alone and when this started and I was continuing to decline weekly I was constantly worried I would lose my ability to work. I would have likely been homeless and had a lot of emotional stress on me as well. Neuromuscular things are quite scary because you really do not know where they will go. I have seen patient and patient suffer devastating consequences from NM disorders and knew what could happen.

I am sorry to hear your situation and how difficult work is for you. I wish you continued improvement.

I pursued other alternatives to the B12 neuropathy theory ( against PCP advise) and had my spine imaged. My thoracic MRI showed a syrinx and I received a frantic phone call saying my buttock area issues might be from this. I had a Neurosurgery appt (and worried for a month prior because this particular condition has high complication/ high failure surgery). The Neurosurgen then said it was not a true syrinx but a dilated central cord (congenital and would cause no issues). He pointed me back to the B12 and said I likely had SCD. I see Neuro in 7 days and nerve conduction studies are on the way. I am also not diabetic.

I also have muscle wasting (both visible and lab measured). This entire experience has been quite the roller coaster.

[Katherine123]

I have severe muscle wastage from this Pappup1 and I am sure this is not helping me get on my feet, I am hoping to have physio if my doctor plays ball, I don't hold out too much hope on this :0( I have my own business (3 of them) and I understand your worry, if I don't work I don't get paid.

[Pappup1 in reply to Katherine123]

I hope your Dr helps you get the PT required. I have quite a bit of wasting but luckily I was in pretty decent shape and active prior to the def or I am sure it would be worse. My weakness seems Neuro to me. It sometimes feels like I have an armor vest on ( heavy & cape-like). Thankfully this is not daily. I deal with lower extremity neuropathy and when I have upper body weakness it makes for more difficult days.

[bdole2018]

Are there any state or federal disability benefits you could claim to supplement your income? I know usa social security isn't always wonderful but even a small extra amount could help out.

[Pappup1 in reply to bdole2018]

Hi bdole2018, I am 48 yrs old. Otherwise in great health and used to an active lifestyle. I have emotionally suffered through this ordeal since having to accept a new normal. I find that I do better mentally if I work since it makes me feel at least partial normalcy.

I could likely get SS disability but the process is long and I would never make what I can working. I am a NC state employee and could get short term disability after a 60 day wait period if it comes to that. They allow 2 yrs on short term before it changes to long term. I could get long term until I would qualify for retirement. My first retirement (partial benefits) would be 2025. First full benefit in 2029.

[Pappup1 in reply to bdole2018]

I would never qualify for supplemental as long as I work. I am upper middle class on our income scale.

[bdole2018 in reply to Pappup1]

I see. Well it's good to know there is some safety net even if it is not worth claiming ATM.

[Pappup1 in reply to bdole2018]

Yes, I am lucky to be a state employee as I will never be without some sort of income. Short term is only 50% of salary though and my mortgage is very high. My mortgage is not my only bill of course so even though there would be income it would not nearly be enough. SSD would give me around $3000/ mo but I would not be able to last the long, long wait ( and this is still thousands less than I earn). They deny everyone here the first time or two unless you have something that will kill you fast. They will pay you then because soon you will be dead and they can stop. Realistically, it would be a year or more (and likely only after hiring a disability lawyer) before I could expect benefits.

I have thought about selling my home. My hope is it never comes to that but it is an option.

The thing is...during the worst part of my decline the mere thought of work or selling a house seemed impossible. I was so very sick as I am sure many can relate. I am hoping my symptoms have plateaued and I will continue to improve. Things do not seem quite as dismal and I can look at my options with a little less fear.

[Cherylclaire Forum Support]

Keep going, Pappup1 -

it sounds like you have some support at work and you are right about work, especially your's, giving you a sense of value and purpose. Your starting-point to recovery was an extremely low one (<50, using any measurement that I'm aware of is, as you say, virtually nothing) and your having witnessed the consequences of neuromuscular illness must make this daunting to say the least.

Although you have reduced muscular strength, you appear to me to have a lot of mental and emotional strength- and as you have said, being in good shape to start with will help. It also becomes something you take for granted (I was a carpenter & joiner and teach woodwork) -so can be frustrating to be unable to do things that were once easy: independent people find asking for help dents their pride !

Keep on looking for answers, and keep in touch.