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I am not sure where to begin

Unfortunately, for the past few years I have had the weirdest symptoms. They generally come and go, almost like flares. I will feel like crap for weeks or months and then go back to normal.

Currently, I am dealing with swollen lymph nodes and parotid glands, burning nose, itchy ears, super dry, itchy eyes. However, in the past I have dealt with pretty significant numbness and tingling in my limbs, twitching, back spasms, exhaustion, memory issues, fluctuating blood pressure (ie: some days it’ll be 97/60 and the next day 157/100),  floaters in my eyes, intolerance to heat. Plus, a very significant pain in my lower back - it’s pretty intense when it happens. Almost feels like there is a lump in my spine. Chest heaviness when I bend down or deep breathing. Shortness of breath. Super dilated blood vessels, which actually caused my dr to think I had pelvic vein congestion- which resulted in a hysterectomy and I still have one ovary remaining.

This all started in 2018. I had a terrible UTI and then after, I no longer produce ear wax, I don’t need to wear deodorant because I don’t perspire, my face- which used to be super oily has now become so dry that I have flaky red patches. Also, I get these lesions on my body, that based on research look like sarcoids. Also, I retain urine and now have been diagnosed with IC.

The tests that I have had were all the thyroid tests, an MRI, ANA assay, c-reactive, sed rate, RH factor - pretty much most of the rheumatology tests, B-12, CT scans, chest X-rays. EKG and cardio gram. A vascular ultrasound. Everything was normal except: the chest X-ray shows calcified lymph nodes, the CT scan shows multiple calcified granulomas and my B-12 was like 2,330 but the Dr found none of this concerning.

I am just not sure what else I can do or what I should be looking into. Also, I am a 35 year old female. Any suggestions or guidance would be helpful.
6 Responses
Avatar universal
And to add the granulomas are on my spleen.
Avatar universal
Seems like an autoimmune problem but you had a few inflammatory markers tested. Even so if you haven't already seen a rheumatologist, you ought to. They deal with weird stuff all day. Oh and make sure its a good one, like at a university hospital.
1 Comments
I will do that. Thank you for your feedback, I am starting to think it may be sarcoidosis which I know can cause autoimmune symptoms. It’s been the longest road ever and I feel like giving up most of the time, but then I have no choice but to keep pushing forward.
Avatar universal
I am sorry to hear you are feeling this way and I understand as I have also undiagnosed symptoms and just can't figure out what is going on with me to the point I wake up wishing this wasn't my body and wishing it was different. I am not sure what you have, but some of my symptoms are similar to yours. My advice is when you are feeling horrible and at your lowest to Always keep in mind that you will feel better again and that it takes time for your body to snap out of it and normalize again. Hugs to you and Hoping that you will be better very soon. Try to find out things your body responds positively to. Like maybe eat an anti inflammatory diet, epsom salt bath and things like that. Comfort  causes happiness and happiness is healing my friend.
10 Comments
I know how you feel with the internal feelings about your body. It really is the most sucky situation. I always think to myself that this can’t be how I am going to feel for the rest of my life. You are so right, I do try to think that this is a moment and eventually, I will start feeling better per usual.

I just get frustrated with Drs looking at me like I am crazy or blaming it on anxiety. I will be celebrating the day I get a diagnosis because at least I will know what I am dealing with versus knowing something is wrong, but not knowing the path I should take. Thank you for the kind words and helping me feel like I am not alone on this undiagnosed journey.

May I ask what your symptoms are and how long have you been dealing with them? I hope you find a diagnosis sooner then later.
Of course you may ask. I posted my dilemma here on the page. I feel exactly like you. it is frustrating that Dr. can't figure it out. I have been to specialists and Dr. for 11 years now and they always blame it on my anxiety. This is what I wrote: I need your help guys! I feel like I am at wits end. My nights feel like I won't make it until morning. I need tips and advice on what has gotten you out of a horrible flare up. I have been in this cycle of misery since 4 weeks and 3 ER and 4 Dr. visits have not helped. It seems like I just can't break this cycle:

Symptoms Started 4 weeks ago:

Strange taste in my sinuses/ mouth.
Complete dryness in my sinuses, eyes, mouth, throat. Absence of any mucus. My whole body felt like a shriveled up prune. My hands look like I am 80 years old. I drink loads of water, highered salt intake, pee like crazy. Still feel dehydrated since weeks.

I get up to 4 panic attacks a day, every day since 4 weeks.

My eye sight changed to more blurry.

Burning pain episodes in my whole body. Swelling in my legs and hips. Burning pains in my kidneys.
Allergic reactions to meds and food. I am nauseous all the time. No appetite at all. Lost 14 lbs involuntarily.

Can't fall asleep and when I finally do, I either wake up having a panic attack, blood pressure problems or I feel like I am dry like a desert and need to down water.
When first waking up I have excruciating pain in my body like there is toxins running through my veins.
I get very dull headaches. Like they are inside my brain.
My heart is racing, I get heart palpitations, stinging pains and burning pains in my chest.
My body trembles and I get tremors. Excessive sweating.
My body feels like it's attacking itself. Arms and legs have tingling pain and numbness. Inflammation. Muscle pain and bad muscle twitches. Ongoing pain between my shoulder blades. My whole body crackles at times.

Serveral blood tests were done. Dr. say they are fairly normal, but they always showed the following:
High:
White Blood cell count
creatine
glucose
ABS monocytes
chloride
AbS Neutrophil

low:
Anion Gap

ER prescribed Gabapentin, Lexapro and some other med to which I all had bad allergic reactions. Weed makes me more anxious. CBD doesn't seem  to help. I take Xanax when needed. I take 0.25mg each up to 4x a day, because I get up to 4 attacks daily and in my sleep.

I eat food and within half an hour I feel hot, flushed cheeks, I get nauseous and the worst dizzy spells and here I am again downing loads of water.
My Lymph nodes especially the ones under my arm pits are painful. Chest feels tight like something heavy is on it. That comes and goes. My hands and feet are freezing cold and clammy.

Thyroid came back normal
No diabetes.
My next Dr. appointment is not until the 20th.
I tried Epsom salt bath, but the heat seems to make it worse. I am also diagnosed with Fibromyalgia, but this is NOT my typical Fibro.  I am desperate!! I want to feel better and don't know how. Any of you who can relate... what helps? What gives you relieve? Herbal? Medicine wise? I was thinking of going back to ER, but so far they keep sending me back home after giving me Lorazepam with the diagnoses of Panic attack and heart palpitations, or they blame it on my Fibro. This is the worst I have felt in my 47 years of existence. Thank you for taking the time to read and give advice. I am sorry it is long ❤️
I also had a flare up in 2017, 2019 and now. In between here and there I get symptoms but once I am thrown in a full-blown flare up it's usually month. My memory is fading too. Flare ups for me usually start with fluctuating blood pressure too.
I am astonished- mine start with the fluctuations of the bp too. It’s equivalent to an aura before a migraine.. kind of like a warning. Mine tend to last for a few weeks. The one I had in 2017 lasted for months. I thought I was losing my mind. This one has been bad, but the one in 2017 was worse and it really scares me. After that one, I had some remaining issues that I still deal with today, but have become my new normal.
I have had that too. With every attack it gets worse. It never goes back to how it was before... just gradually worsens
I don't know if you have a FB, but if you like you can find me and friend me. I am under Alex Egler and I have a white fox as a picture. I went back to the ER again yesterday too. It was one of these days. Today I have the worst dull headache and my eyesight is off. sigh
I currently don’t have Facebook, but once I reactivate - I will send a request. Hopefully, we will get answers eventually - I figure eventually something will happen and they’ll need to focus on it.
You know... I might deactivate mine for a while too, I usually do animal rescue and founded a 501c3 but its too hard to function for me at the moment and I cant do the stress that comes with it.
My heart goes out to you. Really. You can be the richest person in the world but, it doesn’t matter with our your health. Nothing in life feels good if you feel like crap all.the.time. You do have the positive Ana - which helps for Drs. The only thing I have is bilateral calcified lymph nodes, granulomas on my spleen and left lung lobe. Doesn’t appear to be worrisome to Drs. Even though I can’t blow up a balloon anymore and I have this chest tightness that feels kind bronchitis.

One of the things to be thankful for is how in tuned you are with your body. Drs are medical experts but, you are the expert on your body. I would keep going to Drs until you find someone who will hear you and understand that lol  based on your description of events, that something needs to be reviewed further. Personally, I think drs focus on the good things, like a good CBC or a metabolic panel and disregard the abnormal stuff. I think if you have a patient who is complaining about weird stuff, instead of focusing on the good .. they should focus on the abnormal.
I 100 hundred percent agree with you. unfortunately doctors tend to only look for a common symptom. For them, it is easy to determine when someone for example comes to the ER was high blood sugar and they have diabetes already. For a doctor that is an easy fix because they know what causes the high blood sugar. People like us we have so many symptoms which are unspecific to them to pinpoint one condition.

so far I keep getting these panic attacks and excruciating nervepain and the worst headaches inside my brain. They put me on lorazepam which seems to help in a way that I do not get full-blown panic attacks. But I still look at all the other symptoms. I have done some reading the last few days and I think that I have an overreactive sympathetic nervous system and it seems like the parasympathetic nervous system is somehow not kicking in correctly or is suppressed. I am not a Dr and I don't really have a good neurologist, but I hope that maybe my Dr can send me to a better neuro to figure this out. This is horrendous. The worst I have ever felt. I get that respiratory tightness too. It's like something is swollen under my breasts cutting off my air and choking my throat.
Avatar universal
You started off your question with wondering where to begin.  That's probably the key to finding the cause of these symptoms.  A doctor isn’t going to know where to begin either when presented with this long list of problems.   So you will need to help your doctor out by pointing her in some particular direction.  It seems like you have at least three distinct problems that may not be related, so each groups of problem should be pursued separately at first.  

One set of problems includes swollen lymph nodes and parotid glands, burning nose, itchy ears, super dry, itchy eyes - all of these things could be caused by an allergy to some type of airborne allergen.  The best way to investigate this possibility is to see your primary care doc, describe these symptoms and get screened for allergies through an allergy skin test.  Do not opt for blood test screening as it is not as accurate as the skin test.  You can also search online for ways to reduce house dust, as that is one of the more ubiquitous causes of airborne allergens.   Maybe you could solve this problem by eliminating sources of dust in your home.  

Another set of possibly-related symptoms includes numbness and tingling in limbs, twitching, back spasms, pain in lower back, sensation of a lump in the spine, chest heaviness when bending down or deep breathing, and possibly shortness of breath (if it feels like something is restricting your rib cage from expanding).   All of these problems can be caused by compression of nerve roots in the spine.  Again, your primary care doc is probably the place to start for this.  The first step is usually an x-ray to look for bone spurs or tumors, misalignment, and other issues involving the bones.  A follow up MRI might be needed to look at discs and nerves.

A third set of symptoms includes exhaustion and memory issues, which have all sort of possible causes that need to be teased out by a process of elimination.  The first two things to screen out are depression and sleep disorders.   A FitBit can often show the presence of a sleep disorder.

The fluctuating blood pressure problem could be tested to see if there is a problem with neurological regulation of your BP.  If that’s the case, there’s usually not much that can be done for this type of problem.  The remaining symptoms are a lot harder to pinpoint because they can occur  with or without an underlying medical problem.   You might want to focus on one or more of the three groups of symptoms before pursuing the other vague symptoms.  

Avatar universal
It's tough when you know something is wrong with your body and doctor's can't find the cause.  If you look up Sarcoidosis, you will see many of your symptoms fit, such as swollen lymph nodes, itchy eyes, shortness of breath, etc.  The symptoms can suddenly appear and go away or have a gradual progression.  

It is an autoimmune disease, and it seems to be diagnosed with chest x-rays, CT, breathing tests vs      

https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358
1 Comments
Thank you for the excellent information Fumbling. Please join us more often helping our members. We appreciate it!
Avatar universal
I forgot to add that Sarcoidosis also has lesions.
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