Feeling quite ill for over a year - not yet been diagnosed.

Posted by cosimax505 @cosimax505, Oct 31, 2021

Hi,
My symptoms began suddenly in May of 2020. BTW, I am in my early thirties. I was taking prescription Adderall to help with my ADHD and to do better in my graduate school studies. as directed and had been for approx. 4 months and when I took the second pill of the day in the afternoon, I felt an intense malaise feeling and impending sense of doom sensation like I had never felt before. My left arm also started having this weird aching sensation. I stopped taking the medication due to this bad reaction. Though I stopped taking Adderall, these feelings returned and grew more and more frequent as the weeks went by. I started having weird electrical pains in the left side and center of my chest while feeling malaise and jitteryness everyday for most of the day. I also started having frequent soaking night sweats, my heart would have big thumps and skip beats, and I at first had insomnia where my body only wanted to sleep a few hours rather than my normal 9-10 hours.

I went to the emergency room at different hospitals on numerous occasions and everything was normal - ECG, chest X-ray, and bloodwork. I have seen numerous specialists for about a year and a half with no serious diagnosis.

I have been dealing with this illness for over a year and a half and it has "evolved" into the following symptoms:

1) I am now having frequent muscle twitches/fasculations all over my body with a constant twitching eye lid.

2) I feel like I am in a dream, like nothing is real, like my consciousness has been decreased by 50% or more. I do not feel right at all.

3) I feel really intense malaise/illness where I don't like walking around much or going outside. Nature and outdoors makes me feel nervous and sick where when I was normal I loved the outdoors. My thoughts go to all of the death that occurs naturally in nature when I go outside. It is a sickening feeling, and I don't know how to describe it, it is as if my brain is just so sick. The Earth and nature makes me feel an impending sense of death and I have never had thoughts like these before in my life.

4) I have panic attacks and heavy anxiety without a cause. I can feel calm one minute and the next I feel intense adrenaline panic attack feelings mixed with an impending sense of doom and death. The anxiety is not from anything stressful going on but feels like some sort of chemical reaction/process that has gone awry in my body.

5) Frequent night sweats. I wake up having to change my clothes and sheets while feeling intense malaise.

6) Electrical shooting pains occur in different parts of my body at different times. They can be in my chest, my legs, my arms, my face, skull, just anywhere. They are most frequently in my chest.

7) I can't concentrate to make decisions or even watch much tv. I just spend the day in my bed trying to concentrate and watch tv to get my mind off this awful condition.

8) The inner side of my fingers have turned yellow along with the soles of my feet. Also part of my eye is yellow.

9) One of my latest symptoms is sleeping over 12 hours but still feeling sleepy and fatigued. I feel constantly tired.

10) My latest symptom is not feeling hunger hardly anymore and I drink protein shakes to desperatly keep my weight up because I keep losing weight - I went from 178 lbs when this illness started to 139 lbs.

11) I have delirium where I can't make sense of my thoughts and they are jumbled up like in a dream.

12) I smell phantom odors that are what I remember smelling when I was a child. Like the odor in my childhood home.

13) I have a sensation that an electric current is running through my body.

14) Soon after I eat a meal, my heart beats very hard.

15) I have in the past several weeks having recurrent shortness of breath where I can't breathe well and have "air hunger." This causes me anxiety.

Does anyone have any idea what I should do or what is going on with my body? I am so tired of feeling this way and I was hoping this would all go away on it's own. Why can't my body heal from whatever this is? It has been going on for nearly a year and a half. I am not dying or have a terminal illness, right?

I would really like a response and some advice on what to do or possible diagnosis.

Thanks for your help.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

@sashasamantha

Hello, I have some similar symptoms which started almost 3 years ago and I am in constant debilitating burning pain from chest to pelvic area with GI motility issues and now sometimes head and other areas have nerve "sensations". No help from any docs and neither Jacksonville nor Minnesota Mayo could get me in for diagnostic workup. After lots of studying, I believe these things start as infection or possibly a central nervous system herpes virus reactivation which no doctor seems to understand, test for or address in any way. This can include Epstein Barr, HSV1 and 2, CMV and other viruses most of us carry but are not familiar with. For central nervous system infections a spinal tap may find it. Of course other pathogen types could be involved. Such infections may then possibly cause autoimmune conditions and the red dots (I also get) can be indicative of vasculitis, among other possibilities. I asked for ANCA panel test came up positive for proteinase 3 but still no diagnoses. Also ask for immune globulin, mast cell activation (allergist/immunologist)tests and neuromuscular antibody panel (published by Washington Univ) some of the results of any of these could be an indicator to at least point you in a direction though I myself am getting nowhere with doctors. Hope to keep in touch and keep each other posted

Jump to this post

We’re you tested for small fiber neuropathy? It may be worth it in your case

REPLY
@dianecostella

We’re you tested for small fiber neuropathy? It may be worth it in your case

Jump to this post

HI, Thanks for your response. since my apparent neuropathy is chest and abdominal/pelvic areas (internal) not sure they can test that? Doc didn't do it, just said "Can't rule it out" but didn't know where he could biopsy in my case, I think. The only thing I see that might help is IVIG (or maybe subcutaneous version) but without proving some specific autoimmune cause (or may some other accepted cause) then I guess it wouldn't get approved by insurance, yet it has caused GI motility dysfunction and IVIG can help organs damaged by small fiber neuropathy to function better. Might be autoimmune cause based on elevated PR3 and polyclonal gammopathy but I think whole panels of antibodies would need to be tested. I know Mayo and Washington Univ publish some of these but can't get a doc to order them as they always say they won't test anything they don't understand (plus there are so many to test for, and insurance may not cover). Appreciate any ideas!

REPLY
@jenniferhunter

@cosimax505 I always see ads for a prescription drug that talk about tardive diskenesia that is a side effect of taking drugs for depression and it talks about involuntary movements, etc. This is another prescription to treat those side effects. Sometimes side effects of drugs are the last thing doctors would think about. Have you asked your doctors or pharmacist if your symptoms could be explained by a drug side effect? It's good that you were checked for gall stones because of pale colored stools. That happened to me once and was caused by supplements that I was taking to detox my body. I got too much and it became an overdose and probably caused swelling of the bile duct. I had an ultrasound to check, but they didn't find anything. It took several days to resolve after I stopped everything and everything returned to normal. Pale colored stool can also be a symptom of compression of the bile duct externally by a mass for example pancreatic cancer because the pancreas sits right under the liver near the bile duct. Light colored stools and yellowing of the eyes (jaundice) can also be symptoms of pancreatic cancer. Here is Mayo's information on that.
https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/symptoms-causes/syc-20355421

It's something to ask your doctor about. Ask if there has been imaging done that would rule out cancer near the bile duct. Jaundice also happens when the liver is overloaded with drugs. My mom was overdosed on pain drugs while in the hospital which caused her to become jaundiced temporarily. It is good you are working with a liver specialist. Are you still taking the prescription for Adderall? Here is some information about long term side effects that list some very similar symptoms to what you are describing?
https://americanaddictioncenters.org/adderall/long-term-effects

Would you be willing to discuss possible side effects and toxicity of your prescriptions with your doctor?

Jump to this post

I am only 35 years old, so I think it would be really unusual for someone my age to have pancreatic cancer. I actually asked my GP if I might have this disease and she said no because my pancreatic enzymes have been tested in repeated blood tests and they are always normal. Also, I had a upper right quadrant ultrasound and my pancreas appeared normal, no sign of anything wrong with it from that imaging test.

The inside of my fingers are yellow and my eyes have some yellow in them, but in all of the blood tests I have had done, my bilirubin is always in the low end of the normal range. So my heptalogist and GP says I don't have true jaundice because they say it is elevated billirubin levels in the blood that indicate and cause jaundice, which I don't have at all. So they are not sure why I have the yellowing because my blood tests are normal.

Also, I have read symptoms of pancreatic cancer, and I don't have most of them. So I think it is unlikely I have that disease.

Only abnormality on upper right quadrant ultrasound was fatty liver, everything else looked normal. Bile duct looked normal in ultrasound.

BTW, I stopped taking Adderall almost as soon as my symptoms started in May 2020. I first tried to space out my taking of the drug and going with a lower dosage but when symptoms persisted I quit taking it altogether and that was in May of 2020.

I do not take any prescription drugs now b/c I do not want to put any more strain on liver or body. I only take vitamins, herbs, and herbal teas.

REPLY
@cosimax505

I am only 35 years old, so I think it would be really unusual for someone my age to have pancreatic cancer. I actually asked my GP if I might have this disease and she said no because my pancreatic enzymes have been tested in repeated blood tests and they are always normal. Also, I had a upper right quadrant ultrasound and my pancreas appeared normal, no sign of anything wrong with it from that imaging test.

The inside of my fingers are yellow and my eyes have some yellow in them, but in all of the blood tests I have had done, my bilirubin is always in the low end of the normal range. So my heptalogist and GP says I don't have true jaundice because they say it is elevated billirubin levels in the blood that indicate and cause jaundice, which I don't have at all. So they are not sure why I have the yellowing because my blood tests are normal.

Also, I have read symptoms of pancreatic cancer, and I don't have most of them. So I think it is unlikely I have that disease.

Only abnormality on upper right quadrant ultrasound was fatty liver, everything else looked normal. Bile duct looked normal in ultrasound.

BTW, I stopped taking Adderall almost as soon as my symptoms started in May 2020. I first tried to space out my taking of the drug and going with a lower dosage but when symptoms persisted I quit taking it altogether and that was in May of 2020.

I do not take any prescription drugs now b/c I do not want to put any more strain on liver or body. I only take vitamins, herbs, and herbal teas.

Jump to this post

@cosimax505 Thank you for your response. My response to you was also for everyone else who reads the discussion, and I wanted to mention some things to think about, and I didn't want to assume that you had discontinued a medication that you said you were taking and suspected of causing symptoms. Cancer also affects children so there really isn't an age that would rule it out as a possibility, so that is the responsibility of a doctor to rule out and doctors don't want to miss things, so it's always good to ask a physician that you trust. The symptoms you mention of a pale colored stool are a red flag, so I am glad that you had that discussion with your doctor and have filled in a few more details here. Many different diseases and conditions have overlapping symptoms and requires some detective work from doctors to figure things out. I think you had mentioned taking Vitamin B, and that and other vitamins can also be toxic in large doses. Perhaps you have discussed this with your doctor. Some supplements can also have side effects, so it is good to question everything if you don't know what is causing symptoms. This post by @johnbishop has information about too much Vitamin B6.
https://connect.mayoclinic.org/comment/597041/

If you still are looking for answers, you may be interested in physicians in the field of environmental medicine. They are functional medicine doctors who look at the body's biochemical processes to see if it is functioning as it should. Some also detox patients from exposures to toxic substances. The Environmental Health center in Texas was the pioneer in this field of medicine. https://www.ehcd.com/

There is also a provider search at this link at the American Academy of Environmental Medicine.
https://www.aaemonline.org/

REPLY

I hope you know by now you have late stage chronic Lyme disease. Im 100% sure of that because you list ever single symptom i have

REPLY

Have you considered Parkinsonism, like Lewy body disease or multiple system atrophy? Many of your symptoms, but not all, could be explained. Doctors hate to diagnose these because there is nothing that can be done apart from treating all your symptoms separately. There is no bio-marker. The symptoms are different for everybody. That’s where I am now.

REPLY
Please sign in or register to post a reply.