Can the cure be worse than the disease?

[NJMommy]

Hi everyone, I'm new to this forum as well the illness. I was diagnosed with PA last month. My b12 was 103. Aside from all the fatigue, cognitive problems, digestive issues, dizziness etc, my neurological symptoms were so bad that I lost feeling from my toes all the way to my shoulders within 3 weeks. I though I was crazy! After my MRI showed brain and spinal cord damage, MS was ruled out with a spinal tap. My neurologist finally diagnosed PA. Apparently the brain and spinal damage shown from PA (subacute spinal degeneration) mimics MS. After multiple invasive tests I was finally seen by a Hemo who said in his 25+ yr career as a doctor he's never seen levels as low as mine. So, I've started b12 injections, and have seen some improvement in the numbness (no where else yet); however, I'm now having what I can only call neurological episodes. I feel like there is electricity coursing through my body where ever numbness still exists and my heart starts pounding out of my chest. It appears that they're getting more frequent and lasting longer. It's debilitating, I'm afraid to leave the house because they're so bad. Has anyone else dealt with this during recovery? My neuro said it's part of the healing and remyelination processIf but I haven't found anything remotely close to this online. If this has happened to anyone else, how long does it take to stop?

[purple-uni]

Hi,

That sounds correct...many of us have an increase of symptoms or even new ones. I thought I felt bad before treatment, but it seemed to get worse before it improved. I've heard many people say similar things. There are some great forums you can join...I personally like this Facebook group - Pernicious Anaemia/B12 Deficiency - Support Group (just search that on Facebook). You'll find so many people on there that are very knowledgeable and friendly.

You should be receiving B12 injections a couple of times a week until you see no further neuro treatment and then it seems to vary considerably between different people as so how often each of us can last between jabs. I'm at about 5-6 weeks between shots.

cheers

Jacqui

[Nadzie85 in reply to purple-uni]

Many thanks for the facebook support group, wouldn't have thought of looking for that. However a little disheartening to see more than 3000 members yet nowhere near that many signatures on the recent petition that's going around

[Gambit62 Administrator]

Not quite the same as my neuro symptoms weren't anywhere near as bad but when I've recently been through a period of using high doses of a nasal spray because nobody bothered to ask if I had neuro symptoms when they diagnosed me and so never had loading shots properly - ie every couple of days until the symptoms stop improving - and couldn't get my GP to listen to me about B12. During that I noticed that some symptoms pain wise seemed to get worse though actually I'd probably characterise it as problems that I'd had in the past but not for several years recurring. It passed relatively quickly and the benefits for me on the psychological side (which was where my main symptoms seemed to be) would have balanced that out ... though probably finding myself able to walk again and go up ladders without any problems was the biggest boost.

Hope that you can stick with it and that it resolves itself soon.

[Hidden]

Hi NJMommy,

Welcome here! I am sorry for you that you have been diagnosed, but hopefully with the right treatment you will feel a lot better in time. Your symptoms could be just awakening of the nerves say, but I personally think you should go to your DR and mention it as it also can be hypokalemia, low potassium, which can occur with starting intense treatment with B12 injections, and that can be dangerous.

diagnosis. /Vitamin B12/

[American Society of Health System Pharmacists. AHFS Drug Information 2008. Bethesda, Maryland 2008] **PEER REVIEWED**

"Serum potassium concentrations should be monitored during early vitamin B12 therapy and potassium administered if necessary, since fatal hypokalemia could occur upon conversion of megaloblastic anemia to normal erythropoiesis with vitamin B12 as a result of increased erythrocyte potassium requirements. "

Explanation of hypokalemia:

nlm.nih.gov/medlineplus/enc...

"Symptoms

A small drop in potassium level often does not cause symptoms. Or symptoms may be mild and include:

•Abnormal heart rhythms (dysrhythmias), especially in people with heart disease

•Constipation

•Feeling of skipped heart beats or palpitations

•Fatigue

•Muscle damage

•Muscle weakness or spasms

•Tingling or numbness "

I hope you will get yourself checked soon,

Kind regards,

Marre.

(PS you neurologist has not lived, 103 is low, but unfortunately lower is also seen on the old PAS Forum, see for lots more info:pernicious-anaemia-society....

[NJMommy]

Thanks to all for replying to my post. The disease and the symptoms they produce is bad enough, but the anxiety that accompanies, is really enough to make a sane person crazy. Being that cognitive difficulties and issues with mental stability are part of the disease, that says a lot! I'm sorry that there are so many of us out there, but it's definitely helpful to have others who understand!

I had 2 weeks of loading shots, and now I'm down to once a week, I'm not sure if that's enough. Marre, based on your post I researched hypokalemia. Some of the symptoms are similar to PA, but when I looked at some of the others and realized I had those as well, I took your advise. I'm seeing the hemo tonight. I mentioned these things to him twice over the course of the last month and he wasn't concerned and blew me off stating it was all neurological. I'm insisting that he test my potassium levels and I don't care if he thinks I'm irritating him. You'd think that if the 2 diagnosis can go hand in hand, he might have at least provided me info and told me to look out for certain things. We'll see what he says tonight, and then I'll see if I need a new hemo.

Thanks again for the info and support you have all provided, it makes being sick a little easier to know that there are people who will listen even when others don't know what to say.

[Hidden]

Wishing you good luck and hope all will be resolved for you soon, grow a thick skin, its only you who will benefit from making sure you get answers for your symptoms. Marre.