Sense of touch seems off: Hello... - Pernicious Anaemi...

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Sense of touch seems off

Hipster123 profile image
14 Replies

Hello everyone,

I usually do not post on these kinds of forums so this is relatively new to me. I am a 22-year-old, male, graduate student in the Midwest and I think something is wrong with me. For the past three weeks, my body seems kind of off. I was going home for break after finishing my first semester of school and noticed that my tinnitus (have had really mild tinnitus since I was a young boy that recently increased a year and a half ago) started acting really weird again when I was on the charter bus. I got a little nervous but shrugged it off as I knew I would eventually get used to it again. A few days later I noticed weird tingling pins and needle sensations in my arms, legs, back, etc. A couple days later, I felt like something was wrong with my sense of touch. I can still feel things, but it just seems off. Like it's not functioning at its full capacity. I can go in the shower and feel warmth but it's like it's not processing fully because I can turn the shower to the hottest level and not feel like I am burning or my reflex to turn it down does not kick in. I went to my general doctor and explained the symptoms and she thought it was just my anxiety. She did a blood test and everything came back normal, but she said my Vitamin B12 level was 360 and they usually wanted to see that above 400. I was told to take 2500mcg methylcobalamin dissolving tablets and they are gonna test my blood levels in March when I go back home for Spring Break. I have been taking that since right before Christmas-time and I still don't really feel much better.

I am getting nervous and think there is something more serious going on with my body. I also had a chest x-ray over break and they said everything came out normal. (I was having weird, mild chest pain and shortness of breath before the semester ended). I also saw a chiropractor who did a series of adjustments on my back before I returned to school. I really want to see a neurologist or have MRI's done of my head and spine, but I am so scared to tell my parents because they just think it's all my anxiety. I can't keep living my life with everything just being chalked up to anxiety, as that is not a healthy way to live. I also don't want my parents burdened with the financial parts if I do go to the doctor and get the MRI's, especially if they find nothing wrong which I am also worried about because that will just make me feel crazy.

Has anyone ever had symptoms like these before that went away? I hate feeling like something is always wrong with me all the time.

I hope everyone has an awesome day and I am looking forward to any response or sense of relief.

14 Replies
Av42 profile image

It may be worth having your folate tested unless you have already . I was suffering with what I thought was anxiety as had sweating and heart palpitations but went to doctor when I realised it was happening even when watching tv or standing in shower . I have B12 injections and when I’m due my next jab my fingers go quite numb and although I can pick up things don’t feel like I’m quite holding them . My brain also felt like it was turning over in my head . Hope this reassures you that it may not be your anxiety or that you may not have anxiety at all but vitamin imbalances .

Nackapan profile image

You know your body. If it's not working properly it's not working properly. You need to make a list of before yhrse symptoms and after. What symptoms bother you most. Find someone that will properly listen to your concerns. A friend ? Take one step at a time. If you are not well you will be anxious. That is normal but unfortunately makes things worse. Don't be palmed off that it's all anxiety because they haven't got the answer. Try and separate what you know is anxiety and the symptoms that are causing it. (Hope that makes sense )

Try and relax , take a walk?

Can your bloods be done sooner?

There should be someone in student health to help you navigate the right tests. I wish you well

Eowyn1 profile image

Hi - I had a similar "mystery" illness going on for several years and I know when your body isn't functioning properly how frightening it is. It is also a lonely experience in many ways because to others you look "normal" so they figure you must be depressed/anxious/making it up/ wanting attention/laziness . . . etc. etc. etc. But you do know when something is really "off" about your body - stick with that feeling. I can have moments of being practical and "bottom line" about complex stuff I encounter, so after a few years of my health spiraling downward I decided to try one more blood test. It changed my life. I went to a Naturopath and got a blood test that evaluates all of the essential vitamins, minerals, amino acids. The test I got is called Spectra Cell. I was so absolutely shocked at the results. I was badly low in all of the B vitamins and several other nutrients. I began B12 injections that day (I am one who cannot absorb B12 through the stomach and intestines - so pills don't do anything) and within 2 weeks I knew I was somehow going to be OK. I still struggle with fatigue and energy levels but I've got myself pretty much back. I had a care giver/cook for a while during the years before that last lab test who was totally perplexed by my illness. One day I was complaining about having to have another blood test and she just looked at me and said "blood doesn't lie!" For me, I had put up with 3 1/2 years of mainstream doctors telling me I "was fine" and I "was too anxious" and they had done alot of blood labs on everything except nutrient levels. My feeling was I was getting worse and worse, and labs had ruled out all the obivous "bad" things, so why not check my status of vitamins and minerals? Well, I hope some of this helps. It sounds like you have a doctor who is helping you and that is so important. This whole awful journey has taught me to always trust my gut feelings.

Good luck!

deniseinmilden profile image

It sounds like you have B12 deficiency for which you will need regular injections. You may need other supplements too. It is often very difficult to get the treatment you need and good that you have found this group. Please take some time to read through lots of posts and replies - you will find that you are one of many.

If you get enough treatment promptly the symptoms should be all be fully reversible but you are likely to need ongoing treatment for life.

fbirder profile image

Your symptoms do sound like peripheral neuropathy. However, there are about 80 different possible causes, so trying to diagnose which it might be over the internet isn’t a good idea.

The most common cause is diabetes. I presume you’ve had an HbA1c test to check for this.

The only way of getting a proper diagnosis is to see a proper neurologist.

MoKayD profile image

Just as an FYI, when I tried methylcobcalabin it made me feel really anxious and weird. I think it effects some people like that. If you are going to take an oral B-12 supplement try something other than methyl to see if it helps with your anxiety.

Linda730 profile image

Hi Hipster,

Just to reiterate, get blood work, but not the typical stuff. If you can't get the panel advised by claudiaawake, at least see if you can get folate, iron, potassium. If the oral b12 has increased your levels, you may be absorbing? But going by your symptoms is a lot more accurate. Getting the right doctor who will listen is even more important.

I have anxiety attacks also, but I was found to have low potassium on top of needing more b12 than I was getting. Stress can make everything worse, and it sounds like that's all you're dealing with right now. Trust yourself and don't listen to those who say it's all in your head. That's a good way to weed out doctors, though. Don't be afraid to walk away from ignorance.

Find someone to give you moral support, if you can. It helps. And don't worry about asking us questions 😊 That's what we're here for, to support one another.

Hipster123 profile image

Thank you all so much for your comments and feedback! I really appreciate everything that has been said by everyone. I will hopefully try to see a neurologist in the near future as this is something I have been wanting to do for a long time. I will also try to keep taking the B12 vitamins and possibly see if I can go in for a re-check soon and do the injections as that seems to help a lot of people with symptoms similar to mine. Thank you all again!

Llawry profile image

Hi. I would be careful about putting too much hope into a neurologist visit. I had symptoms that were very similar to yours and my doctor chalked it up to depression. I insisted that it wasn’t. It took ages to get in to see a neurologist and by that time I was self injecting because my breathlessness, poor balance, tinnitus, dizziness and numb/tingling limbs were really adversely affecting my life.

The neuro thought it was all in my head. Good to go and get checked out - for sure. Just balance that route with education as much as possible as it can be easy to end up being medicated by health professionals who can’t see the forest for the trees.

Good luck to you - there is great info from many experienced and knowledgeable people on this forum so check back in for help!

Llawry profile image
Llawry in reply to Llawry

Sorry forgot one thing - in answer to your question. My symptoms have gone away. Tinnitus cleared up. Dizziness gone. Numbness gone. My feet still burn and symptoms do return if I overdo things.

Hipster123 profile image
Hipster123 in reply to Llawry

Hi Llawry! I definitely think depression has something to do with these symptoms. Sometimes I feel like my emotional processing plays a role in how these symptoms are affecting me. Like I remember how I used to feel as a kid and remember feeling emotion so well. Now it seems like a lot of the times I fake emotion to get through the days which clearly isn't helping. I have been seeing a therapist at school to help with my mental health and that has been going ok. Everytime I seem to be in a fine place in my life, meaning no symptoms that affect me day-to-day, something physically wrong sets me off and I feel like I have some kind of physical health issue going on, much like this point in my life right now. I definitely know I need to work a lot more on my chronic anxiety and depression and have been put back on Lexapro to help with this. I'm glad to hear your symptoms have all gone away, and am hoping I can reach that point too.

This is such a great community here, and am so glad there are other people who have experienced similar symptoms that have improved over time. I feel like I should be switching my career choice to a doctor with all the reading I have done on my physical and mental health throughout the years haha.

Hipster123 profile image

Just to clarify, does anyone think that my Vitamin B12 level being 360 could be a partial cause of these symptoms? Is that a normal level or can people still exhibit symptoms with this amount? I am relatively younger still and know that high levels are somewhere around 900, but is the level I was at low enough for me to experience these symptoms?

hendry profile image

I had a level of,

337and was suffering very badly with neuropathy. I am another who self injects and keeps well now

Hipster123 profile image

Hello everyone. I wanted to post an update as I feel like it is a responsibility in these forum communities to help others, especially if their overall condition has been improving. Since I started the B12 Methylcobalamin tablets, I am today feeling much better :) I have not had my blood labs done to show the B12 level improvement but I will be going back home next week for spring break so I will be checking up with my doctor. My tinnitus has calmed down or I have re-habituated and I am not miserable anymore as I have been since December. I really think the gloomy weather takes a toll on all of us, regardless of what conditions we have. I am excited that spring is right around the corner and am looking forward to spending more time out in the sun. I have also been taking two Men's One A Day multivitamin's every day (the bottle says two) so maybe that has been helping me feel better too. I do think my body being stuck in a fear-response for so long because of the tinnitus may have also contributed with the weird sensations (or lack thereof) that I was going through, so anxiety and depression probably played a huge role in this (I have suffered from intense anxiety symptoms in the past, those were scary days and stories for a different forum, so I encourage everyone to talk to their doctors about receiving any form of medical treatment that works for you or work on a holistic mental health plan by eating and exercising right or whatever you need to do to feel better) I hope everyone is doing well and are getting treatments or support with anything they need. I was taking an anti-depressant for the past two months to help my emotional state and body as well. Now I just have to nail the cause of my tinnitus (I have some leads) and why it started increasing in volume these past two years and I will be a happy camper :)

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