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Author Topic: New and not diagnosed  (Read 93 times)
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JulofDenial
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« on: April 15, 2019, 12:56:34 PM »

Hello there! I am currently seeing a parade of doctors about severe fatigue which started after a chain of respiratory infections that I had in late November, December, and through January.


Allow me to give you some background.

I have been described as being 'hyperallergic' and a very crappy immune system. The allergies were quite a surprised for me since I thought I was just prone to getting colds. Then I went to an allergies who, after testing, told me I was the most allergic person she has seen in two weeks. I am allergic to everything in the air, a few medical allergies, and even am allergic to rapid drops in temperature. I only have very few food allergies/sensitivities all things considered.

I -do- have an exceptionally crappy immune system. I have had one all my life. My doctors accept that it is crappy. Some have even tried to figure out if there is a deeper reason for it to be crappy. It may just be from my asthma and allergies. I get sick every year between November and the end of December with a respiratory of some kind which ultimately requires antibiotics, not the same one mind you, just a random respiratory infection which is usually bronchitis or sinusitis. One year I had bacterial pneumonia though which made things interesting. I also have had a host of other weird contagious diseases.

Honestly it can been very hard to tell where the allergies end and where the crappy immune system begins. I feel like I know my patterns and triggers. Still I have gotten used to being sick, and because of that I usually trust the opinion of the doctors that I have a relationship more than my own.

That said it was no surprise when I got sick with a series of respiratory infections between Thanksgiving and New Year's. I am sick during that time period 80-90% of the time and whatever I have almost always turns into a bacterial infection.

However this year I also started to suffer from lightheadedness and dizziness which freaked me out a bit. My family noticed that I also seemed rather tired. After I was 'better' I still felt off. The only way I could thinkg to describe it is that after you have pneumonia, which I have experience with, there is a period of about a month when you feel 'off', but not quite sick. Whatever is wrong with me feels like that, but worse.

Most days I feel wiped out by 4pm. I get tired. My limbs feel heavy. I feel like I want to lay down on the sidewalk and call my husband to come pick me up. I have had a sore throat off and on and severe dry mouth. I also have riddiculous brain fog which makes me feels like I have Alzheimer's on good days and just stupid on the bad days. Then last Sunday I was got sick (not much more than a cold), but I could not get out of bed for almost 24 hours.

I mentioned it to my allergist and she did some blood tests on me, but only found that my vitamin d was slightly low (I have had low vitamin d in the past) and was a tiny bit anemic. Neither of those numbers were low enough to explain why I am feeling so badly however.

My allergist is very busy this time of year so I went to my family doctor at the demand of my husband. He screened me for anxiety and depression which is reasonable based on the fact I want to stay in bed all day, can't concentrate, and don't like leaving the house. He told me straight up 'I do not think you are depressed' after speaking to me. I know I am not depressed, but only after I had the screening did I know how undepressed I am. He did more blood work on me, mostly the same as the allergist. Then he told me I needed to get a sleep study done. I also was referred to a neuropsychologist about my brain fog.

I have seen the doctor about the sleep study. She looked me over, and looked over a sleep study I had done a few years ago. She said that based on my symptoms and that sleep study she does not think I have sleep apnea or any other sleep disorder that is causing these symptoms. She said I must get the sleep study done however to rule it out. However, she said, that in the end I would be happy if that is what was wrong with me because then I would have some closure and the doctors would be able to treat it. She is the first person to mention CFS.

That said I feel like this is something wrong with my immune system. I feel like I am still sick, with that 'post-pneumonia like feeling'. It was for that reason I thought that it was not CFS, but after doing some researth infections or immune system issues might fit the bill. I am, quite frankly, now worried about what to expect. I really hate going to all these doctors just to eliminate things.
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roger
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« Reply #1 on: April 15, 2019, 05:58:21 PM »

Hi, and welcome to the forum.

I'm really sorry you've had to go through all this. My advice at this stage would be to take a step away from the mainstream and have a consultation with a functional medical doctor or a naturopathic one. It really annoys me when the mainstream says things like, 'you have a poor immune system', but do nothing constructive about it. There ARE things you can do about it and it's the doctor types I've mentioned are the way forward.
Forgive me if I'm wrong, but I get the impression from your post that you are in the USA. In the UK, functional medicine and naturopathic medicine is hard to find. But in the USA it's available pretty much everywhere.

Good luck.
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JulofDenial
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« Reply #2 on: April 15, 2019, 10:44:09 PM »

I am sorry if I gave the impression that my doctors do take my crappy immune system seriously. As I said they have tried figuring out what is wrong with it in the past and they take the issues I have with infections seriously, probably more seriously than I do at times.

I am by and large I am alright with the care I have received on the whole so far. I have only had one negative experience thus far (which was today and will write about below). My GP is open to my use of natural medicine and makes recommendations of his own. I also see a dietician who I like very much and I have had tremendous success with using diet as a supplement to other issues in the past which my doctors have praised me for and take great interest in. It is just the elimination process that is bothering me.

While I am a fan of holistic and many forms of alternative medicine I am not comfortable going to an alt medical practitioner due to secondhand experiances and worries about them exploiting my condition (that of my immune system problems) which always has the potential to cross the line into something very serious. I have a friend who was diagnosed with breast cancer which was, at the time of diagnosis, treatable, but died after spending all her money on alt medicine practitioners who told her that the treatments mainstream doctors were prescribing would kill her. She ended up in the hospital from overdosing on the dosage of vitamins her naturopath prescribed her and only agreed to go to a mainstream oncologist after that. By that time her cancer had started to spread.
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JulofDenial
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« Reply #3 on: April 15, 2019, 10:57:35 PM »

I went to a neuropsychologist today. It was not helpful at all. He was very insistent that I was alright and that maybe the issues I was having were due to my pre-existing ADD. To his credit I can't blame him because I did alright on my exam (exceptionally well he said). He said that any further testing 'would not be fun' and come back in a few months if I did not improve. I told him that even though I disagree about it being ADD I understand because he a psychologist. I was referred by a neurologist and to a hammer every problem looks like a nail. That was good enough for me to know I wasn't going to get any help there. I am not anxious to go back.

My husband did not take it as well, said he saw me on a regular basis, knew something was wrong, and if he 'wanted to diagnose you with hysteria like some 1850's doctor'.

So yea... Not a productive day. Back to my allergist next week and I have a sleep study on the 2nd which I have already been told probably will be normal by the doctor preforming it that it would probably be normal, but it is a process of elimination.
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roger
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« Reply #4 on: April 16, 2019, 05:10:49 AM »

If you're happy with your current treatment/investigations that's great. I hope they find something useful that's treatable very soon  fingerscrossed
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