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Need some helpful advice!

Hey! I am not sure if I should be posting as I am not diagnosed with anything, but I am very worried and feel the healthcare system is neglecting me. I'm a Male, 35yo.

My Story: I was a personal trainer for roughly 10 years and about 2 years ago I quit and got into marketing. I work for myself and the first year was very stressful, I was eating badly and not looking after myself at all.

In March this year I got covid (I am vaccinated), I got hit very hard. I had intense night sweats, tinnitus,dry cough, and tremors. I felt horrible for a few days.

Those symptoms left and I then got weird ulcers and cuts along my tongue and bad ulcers in my throat. I couldn't eat as it was too painful. The Drs didn't know what it was so just gave me tramadol. I also had a very bad rash and the DR said it was fungal so gave me cream. The cream made it worse, so I went to the chemist and they told me it was eczema. I got some cream and it left over a few weeks. The weird thing was that it only showed a rash if I itched it and it would look like hives. It was always very itchy.

I was spitting out blood so the Drs did a chest scan and found nothing and said it was probably the ulcers. They said the ulcers should heal over time and it did.

A few months later I injured my back badly doing bench press. I took a few weeks off training and tried to rehab it. At this point the pain had gone. I did a training session and this was the first time I felt this weird electric pain. I was mid-way through the workout and was overheating. It went away the second I cooled down. 1min max.

From here on I noticed anytime I overheated I would get this pain. I also noticed I was very tired and exhausted. My digestion was very weird and found myself going toilet often. (I've always had weird digestion though).

I went to the Drs and they did a blood test. It came back saying I had low ferritin, however my hemoglobin was normal. The Dr told me to take iron pills for 3 months and come back and see her. The very next week I started getting pins and needles in my feet. At first it was only when I walked for too long, but over time it stayed there constantly.

I went back to the Dr and asked for a Vit D test. The results came back low. So, I got put on medication for that also. I requested to see a new Dr as the other one just wanted me to wait the 3 months and not follow up on the new symptoms.

Round this time the heat pain was getting worse, the pins and needles spread to my hands and I started getting muscle aches. My ulcers, eczema, white tongue and dry mouth issues came back and havn't left in months. Still have them now.

I went back to the Dr and she put me on 37.5mg of EFFEXOR XR (venlafaxine extended-release) to help with the burning nerve pain. It made it disappear. However, the first week of taking it I had insane muscle aches and numbness everywhere. The week following all the side effects left. (ulcers etc were still there)

Now, the week following that the pins and needles came back, and muscle aches. I also had a few days of light tremors in my hands which I also had twice before taking these meds. But once I think was low blood sugar.

Present day: I went to the Dr yesterday and I asked to see a neurologist as I can't think of anything that gives burny pain when I overheat outside of MS. She did some tests on me and because I passed them she cannot send them. She however can send me to an auto immune Dr.

She told me that at the moment I don't show the major signs of MS and that means I cannot get scanned or tested for it. I basically need to be going blind and to be imobile for that to happen. She said that I may have it, but I wont be able to do anything until it gets worse. She thinks it more likely to be an auto-immune issue than MS....

She also said she had no idea what is going on with me and asked me what I wanted to do. Which was see a specialist!

So, basically ive had blood tests for most viruses, auto immune, full blood count, celiac etc and only Low feritin, low vit D and semi low HDL showed up. My BP is also slightly high.

So, my post today is just tell my story and get some clarity. The Dr thinks im overreacting and that I should just leave it alone. She wants me to up my dose of Effexor and learn to relax.

But, I read and hear so many stories of people having issues early on and then only getting diagnosed a decade later. Is it wrong for me to try to tackle this thing before it gets bad? It seems like thats in the best of my interests. Like a 35yo male should not have mouth ulcers, tingling pains and feel randomly tired. Shouldn't I do my best to see what is wrong?

*BTW I have booked a session with a chiropractor to try rule out whether or not the injury could be causing the burny pain. But it doesn't explain the mouth issues, low vit d, iron and food intolerance. Or maybe this is just covid wrecking me.

Anyway. I am literally losing my mind stressing over this. I read an article about Christina Applegate having tingling and numbness for several years before getting diagnosed and that has set me anxiety off again. She seems to have been hit very hard with MS. So, some helpful insight would be good.

Sorry for the bad grammar, its midnight here. Late night rant

Sorry for the rant, I know you guys are going through your own stuff also.

  1. Hi . It can be really scary when your health feels out of control. I am glad you found us and posted here. When you say you were referred to an autoimmune doctor, do you mean a rheumatologist? That might actually be a good thing. Those some of your symptoms are shared by people with MS, they might also be indicative of rheumatoid arthritis or psoriatic arthritis. Often, psoriasis is mistaken for eczema even by some very good dermatologists. Psoriasis can be an indicator of psoriatic arthritis. Here is an article about some common symptoms of PsA: https://psoriatic-arthritis.com/psa-symptoms. Here is an article about RA: https://rheumatoidarthritis.net/symptoms. There are also several other health conditions that can mimic MS and should be ruled out. Here is an article that lists them: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. If you still get no definitive answers, you might want to consider finding a new primary care doctor. It sounds like this doctor is more interested in treating the symptoms and less so in finding the cause. It is important to advocate for yourself in situations like this. So I hope you keep pushing for answers. Keep us posted if you feel comfortable doing so. Best wishes. - Lori (Team Member)

    1. yeah I did a blood test for feritin and Vit D on Friday so we are waiting for the results from that. Then she said she would refer me to a rheumatoidologist but the wait list could be long, to be seen.


      Oh interesting. My mum actually has bad RA. Will look into the links you have suggested.


      The plan is to find a new GP or specialist if my Dr decides to not refer me as yes, she definitely is just wanting to fix the issues and not find out why they are there in the first place. Which is troubling.

  2. One thing I also notice is if I eat gluton and lactose in high quantities I feel 5x worse the next day. Very achy and exhausted.


    My IGA came back high and no indication of celiac in blood tests though. Been on Fodmap for awhile but yesterday slipped up and today I feel terrible.

    1. I also just realized that my IgA was high at 4.2 g/L which my Dr didn't mention. I noticed on my blood test when they looked for coeliac.

      1. Hi . I hope the rheumatologist follows up on those results and that they lead to some answers. I hope you get in soon. If the appointment is far into the future, be sure to ask that they put you on the cancelation list, especially since the holidays are coming up. People are more likely to cancel when they feel the pull of holiday celebrations and stress. Thinking of you. - Lori (Team Member)

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