Help with diagnosis

jluke91

Member
Hello Everyone,

I am a 28yo male. I am new to this forum, so bare with me. I was hoping that someone may offer any advice regarding my symptom profile and offer any incite into a diagnosis. I'll give a quick chronology of what has been occurring over the last couple years. In June of 2016, seemingly out of nowhere, I began to have severe anxiety. I had not had any anxiety at all up until this point. I would describe the anxiety as an all day panic explosion from the moment I woke up until I fell asleep. This lasted probably about a month or so before I began seeking medical help. A couple pcp visits and an ER visit later, I was prescribed valium and 20mg of paxil. With several days on the valium and a couple weeks with the paxil, the all day terror started to reduce to a manageable level. Unfortunately, after several weeks on the paxil i noticed that my hands started shaking if i tried holding something. This progressed into any movements causing pretty much any muscle to tremble ( jaw, feet, hands, etc). At times, it even feels like my heart is tremulous. Due to this anxiety inducing side effect, I tried nearly every ssri to see if any would control my anxiety with less side effects. I finally settled on 10mg of lexapro in May 2017 after trialing about 5 meds.

My feeling as if my nervous system was running like mad never really went away, nor did the tremors, but the lexapro allowed me to function ok. I graduated from college in June of 2017, and began to work quite a lot. I was also studying for the MCAT and applying to medical school. I felt like I was managing ok. I went on like this staying very busy for about 1.5 years. In February of 2019, I was lifting weights at the gym and started to feel like I was fatiguing quicker than normal. I brushed this off and went home. I went to bed that night feeling ok, just feeling a little more tired than normal. I woke up the next morning feeling like I was hit in the head by a bat. It didn't feel like I had any flu or anything, I just felt like my head was filled with cement. i remember feeling super foggy and just mentally horrible. As the day went on I started feeling gradually better. This trend continues to this day, I feel horrible when I wake up but much better by evening. I started having severe pressure headaches, which felt like my head was going to explode. I also started to have horrible insomnia. These symptoms waxed and wained for a couple weeks. I went to my doctor to see what was wrong. I had a brain MRI, blood tests, and urine analysis. No significant things were found. I was told to try another anti depressant, did nothing. Then told to get off everything, did nothing. I was hopeful that If I got off the antidepressants my tremors would go away, unfortunately they are still here nearly a year later. Around this same time I had been accepted to medical school. Since the initial onset in February of 2019, I have a litany of non specific symptoms that fit in many different disease profiles. I tried to start medical school, but only lasted a couple weeks before I had to take a medical leave. Pushing myself makes me so foggy, dazed, weak and usually increases the pressure sensation in my head. At this point, I am pretty much housebound. Due to there being so many moving pieces in my story, and seemingly no immunological onset, I don't really know how to fit the pieces together. Any doctor I see doesn't seem to know either. I have tried many different meds, supplements, therapy, the list goes on, but i cant seem get better. During all of this i still have enormous surges of adrenaline seemingly out of nowhere, but I can deal with it a little better when it first starting happening in 2017.

Some other random noteworthy symptoms are
1. periodic ice cold extremeities.
2. Conversely, I have periodic excess sweating in my hands.
3. Touching cold items are now very painful
4. somewhat violent shivering when cold
5. dont tolerate the heat great ( this has not been the case since the onset in early 2019, so Im curious if dysautnomia that i may present with could be from deconditioning. I have been barely doing anything for quite some time now.) {I used to go to the hot tub and sauna when first feeling sick.}

I have already been tested for lyme, 1st tests was inconclusive and 2nd was negative. I am aware of the fallibility of lyme tests, so it could still be a contender. I don't seem to have characteristic pots symptoms, no big blood pressure changes and no crazy big HR changes. I have a cervical MRI scheduled to see if CCI is a contender. I am trialing anti histamines to see if MCAS is potentially contributing. In my opinion cci, lyme, or hyperadrenergic pots seem like the most likely diagnoses (order of likelihood). Has anyone had similar onset of symptoms like this or have any diagnostic advice?

Thanks,
Johnny
 
Hello Everyone,

I am a 28yo male. I am new to this forum, so bare with me. I was hoping that someone may offer any advice regarding my symptom profile and offer any incite into a diagnosis. I'll give a quick chronology of what has been occurring over the last couple years. In June of 2016, seemingly out of nowhere, I began to have severe anxiety. I had not had any anxiety at all up until this point. I would describe the anxiety as an all day panic explosion from the moment I woke up until I fell asleep. This lasted probably about a month or so before I began seeking medical help. A couple pcp visits and an ER visit later, I was prescribed valium and 20mg of paxil. With several days on the valium and a couple weeks with the paxil, the all day terror started to reduce to a manageable level. Unfortunately, after several weeks on the paxil i noticed that my hands started shaking if i tried holding something. This progressed into any movements causing pretty much any muscle to tremble ( jaw, feet, hands, etc). At times, it even feels like my heart is tremulous. Due to this anxiety inducing side effect, I tried nearly every ssri to see if any would control my anxiety with less side effects. I finally settled on 10mg of lexapro in May 2017 after trialing about 5 meds.

My feeling as if my nervous system was running like mad never really went away, nor did the tremors, but the lexapro allowed me to function ok. I graduated from college in June of 2017, and began to work quite a lot. I was also studying for the MCAT and applying to medical school. I felt like I was managing ok. I went on like this staying very busy for about 1.5 years. In February of 2019, I was lifting weights at the gym and started to feel like I was fatiguing quicker than normal. I brushed this off and went home. I went to bed that night feeling ok, just feeling a little more tired than normal. I woke up the next morning feeling like I was hit in the head by a bat. It didn't feel like I had any flu or anything, I just felt like my head was filled with cement. i remember feeling super foggy and just mentally horrible. As the day went on I started feeling gradually better. This trend continues to this day, I feel horrible when I wake up but much better by evening. I started having severe pressure headaches, which felt like my head was going to explode. I also started to have horrible insomnia. These symptoms waxed and wained for a couple weeks. I went to my doctor to see what was wrong. I had a brain MRI, blood tests, and urine analysis. No significant things were found. I was told to try another anti depressant, did nothing. Then told to get off everything, did nothing. I was hopeful that If I got off the antidepressants my tremors would go away, unfortunately they are still here nearly a year later. Around this same time I had been accepted to medical school. Since the initial onset in February of 2019, I have a litany of non specific symptoms that fit in many different disease profiles. I tried to start medical school, but only lasted a couple weeks before I had to take a medical leave. Pushing myself makes me so foggy, dazed, weak and usually increases the pressure sensation in my head. At this point, I am pretty much housebound. Due to there being so many moving pieces in my story, and seemingly no immunological onset, I don't really know how to fit the pieces together. Any doctor I see doesn't seem to know either. I have tried many different meds, supplements, therapy, the list goes on, but i cant seem get better. During all of this i still have enormous surges of adrenaline seemingly out of nowhere, but I can deal with it a little better when it first starting happening in 2017.

Some other random noteworthy symptoms are
1. periodic ice cold extremeities.
2. Conversely, I have periodic excess sweating in my hands.
3. Touching cold items are now very painful
4. somewhat violent shivering when cold
5. dont tolerate the heat great ( this has not been the case since the onset in early 2019, so Im curious if dysautnomia that i may present with could be from deconditioning. I have been barely doing anything for quite some time now.) {I used to go to the hot tub and sauna when first feeling sick.}

I have already been tested for lyme, 1st tests was inconclusive and 2nd was negative. I am aware of the fallibility of lyme tests, so it could still be a contender. I don't seem to have characteristic pots symptoms, no big blood pressure changes and no crazy big HR changes. I have a cervical MRI scheduled to see if CCI is a contender. I am trialing anti histamines to see if MCAS is potentially contributing. In my opinion cci, lyme, or hyperadrenergic pots seem like the most likely diagnoses (order of likelihood). Has anyone had similar onset of symptoms like this or have any diagnostic advice?

Thanks,
Johnny
I just put a post on here the other day. I have some of what you have going on, but not sure what to do or what it is. I woke up last July or so, and same thing, felt like i had been hit in the head with a bat. I wake up every morning feeling this way to date. I am now on a CPAP machine for sleep apnea, but I still don't feel better. I don't have the headaches that you are describing, I did have them until I used the CPAP machine, and that seemed to help with that. I was also taken through the ringer as far as testing/blood work/lymes test, so I really don't know what to do at this point. I work in an office in front of a computer all day, and it's really hard to focus and function while feeling this way. I too slowly start to feel better as the day goes on, and feel pretty decent in the evenings, but it never really goes away, I always have that feeling of getting "whacked" in the head or feeling hungover.

Thanks,
Matt
 

jluke91

Member
I just put a post on here the other day. I have some of what you have going on, but not sure what to do or what it is. I woke up last July or so, and same thing, felt like i had been hit in the head with a bat. I wake up every morning feeling this way to date. I am now on a CPAP machine for sleep apnea, but I still don't feel better. I don't have the headaches that you are describing, I did have them until I used the CPAP machine, and that seemed to help with that. I was also taken through the ringer as far as testing/blood work/lymes test, so I really don't know what to do at this point. I work in an office in front of a computer all day, and it's really hard to focus and function while feeling this way. I too slowly start to feel better as the day goes on, and feel pretty decent in the evenings, but it never really goes away, I always have that feeling of getting "whacked" in the head or feeling hungover.

Thanks,
Matt
Thanks for the reply. Keep me posted if you find anything out.
 

jluke91

Member
I got a reply on mine to get checked for EBV (Epstein Bar Virus). &/or mononucleous
Hi Matt,

I have already been tested for EBV. I do have high IgG and IgM for EBV, but many people have this so it doesn't necessarily mean anything. I did take a 90 day course of antivirals (valtrex), due to the high EBV antibodies, but unfortunately it didn't make any difference. Might be something you could try if you have a high IgM and IgG for EBV. Also, CMV is another virus that may be worthwhile to test for. Even though you mentioned you have had lyme tests, they are notoriously unreliable, so you could try and get a course of doxycycline to see if it makes any difference.
 
Hi Matt,

I have already been tested for EBV. I do have high IgG and IgM for EBV, but many people have this so it doesn't necessarily mean anything. I did take a 90 day course of antivirals (valtrex), due to the high EBV antibodies, but unfortunately it didn't make any difference. Might be something you could try if you have a high IgM and IgG for EBV. Also, CMV is another virus that may be worthwhile to test for. Even though you mentioned you have had lyme tests, they are notoriously unreliable, so you could try and get a course of doxycycline to see if it makes any difference.
I went to the doc yesterday. They drew about 8 vials of blood and are going to check for Lymes and check my thyroid again. They are also gonna check EBV and some other things. Hopefully they figure something out. Thanks for the feedback, I will keep you posted on my results in a couple of weeks
 

Apo Sci

Active Member
Hello Everyone,

I am a 28yo male. I am new to this forum, so bare with me. I was hoping that someone may offer any advice regarding my symptom profile and offer any incite into a diagnosis. I'll give a quick chronology of what has been occurring over the last couple years. In June of 2016, seemingly out of nowhere, I began to have severe anxiety. I had not had any anxiety at all up until this point. I would describe the anxiety as an all day panic explosion from the moment I woke up until I fell asleep. This lasted probably about a month or so before I began seeking medical help. A couple pcp visits and an ER visit later, I was prescribed valium and 20mg of paxil. With several days on the valium and a couple weeks with the paxil, the all day terror started to reduce to a manageable level. Unfortunately, after several weeks on the paxil i noticed that my hands started shaking if i tried holding something. This progressed into any movements causing pretty much any muscle to tremble ( jaw, feet, hands, etc). At times, it even feels like my heart is tremulous. Due to this anxiety inducing side effect, I tried nearly every ssri to see if any would control my anxiety with less side effects. I finally settled on 10mg of lexapro in May 2017 after trialing about 5 meds.

My feeling as if my nervous system was running like mad never really went away, nor did the tremors, but the lexapro allowed me to function ok. I graduated from college in June of 2017, and began to work quite a lot. I was also studying for the MCAT and applying to medical school. I felt like I was managing ok. I went on like this staying very busy for about 1.5 years. In February of 2019, I was lifting weights at the gym and started to feel like I was fatiguing quicker than normal. I brushed this off and went home. I went to bed that night feeling ok, just feeling a little more tired than normal. I woke up the next morning feeling like I was hit in the head by a bat. It didn't feel like I had any flu or anything, I just felt like my head was filled with cement. i remember feeling super foggy and just mentally horrible. As the day went on I started feeling gradually better. This trend continues to this day, I feel horrible when I wake up but much better by evening. I started having severe pressure headaches, which felt like my head was going to explode. I also started to have horrible insomnia. These symptoms waxed and wained for a couple weeks. I went to my doctor to see what was wrong. I had a brain MRI, blood tests, and urine analysis. No significant things were found. I was told to try another anti depressant, did nothing. Then told to get off everything, did nothing. I was hopeful that If I got off the antidepressants my tremors would go away, unfortunately they are still here nearly a year later. Around this same time I had been accepted to medical school. Since the initial onset in February of 2019, I have a litany of non specific symptoms that fit in many different disease profiles. I tried to start medical school, but only lasted a couple weeks before I had to take a medical leave. Pushing myself makes me so foggy, dazed, weak and usually increases the pressure sensation in my head. At this point, I am pretty much housebound. Due to there being so many moving pieces in my story, and seemingly no immunological onset, I don't really know how to fit the pieces together. Any doctor I see doesn't seem to know either. I have tried many different meds, supplements, therapy, the list goes on, but i cant seem get better. During all of this i still have enormous surges of adrenaline seemingly out of nowhere, but I can deal with it a little better when it first starting happening in 2017.

Some other random noteworthy symptoms are
1. periodic ice cold extremeities.
2. Conversely, I have periodic excess sweating in my hands.
3. Touching cold items are now very painful
4. somewhat violent shivering when cold
5. dont tolerate the heat great ( this has not been the case since the onset in early 2019, so Im curious if dysautnomia that i may present with could be from deconditioning. I have been barely doing anything for quite some time now.) {I used to go to the hot tub and sauna when first feeling sick.}

I have already been tested for lyme, 1st tests was inconclusive and 2nd was negative. I am aware of the fallibility of lyme tests, so it could still be a contender. I don't seem to have characteristic pots symptoms, no big blood pressure changes and no crazy big HR changes. I have a cervical MRI scheduled to see if CCI is a contender. I am trialing anti histamines to see if MCAS is potentially contributing. In my opinion cci, lyme, or hyperadrenergic pots seem like the most likely diagnoses (order of likelihood). Has anyone had similar onset of symptoms like this or have any diagnostic advice?

Thanks,
Johnny
How many muscles are affected by the twitching? Any change in frequency of twitches over time? What viral infections have you had in the past or ruled out?
 

jluke91

Member
How many muscles are affected by the twitching? Any change in frequency of twitches over time? What viral infections have you had in the past or ruled out?
Pretty much all muscles are affected by the tremor. They are postural in nature, not resting. I have them in jaw, feet, hands, tongue... I have only been tested for EBV and CMV.
 

Apo Sci

Active Member
Pretty much all muscles are affected by the tremor. They are postural in nature, not resting. I have them in jaw, feet, hands, tongue... I have only been tested for EBV and CMV.
Viral test results? You have to differentiate fasciculation vs tremor. ME patients often have a period of fasciculation that lessens over time. EBV infection is common in ME. Check for HHV6 infection. Multiple herpesvirus co-infections is one theory of ME (Lerner).
 

jluke91

Member
Viral test results? You have to differentiate fasciculation vs tremor. ME patients often have a period of fasciculation that lessens over time. EBV infection is common in ME. Check for HHV6 infection. Multiple herpesvirus co-infections is one theory of ME (Lerner).
They are not fasciculations, although I have those from time to time, I have had a postural tremor for several years that started prior to ME symptoms. They are just muscle twitches, it is a bilateral tremor when i try to hold my hands up for example. CMV was negative, I had positive IgG and IgM for EBV, but i had EBV when I was a teenager. The PCR for the EBV showed no circulating viral particles, so antibodies were most likely from previous infection.
 

jluke91

Member
Any family history of same symptoms?
No family history of tremor, if that were the case I would be inclined to believe that tremors were essential tremor of some variety. Due to the onset of the tremor being so close to starting the ssris, I feel that those were the most likely cause. In regards to the other symptoms, my sibling, mother, and father are all quite healthy.
 

jluke91

Member
Well ME usually is associated with a viral infection and you didn't mention that in your history. If you have a history of exposure to wild animals and symptoms you could consider bartonella testing (Galaxy Labs). How about Young Onset Parkinson's Disease? https://www.parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Young-Onset-Parkinsons#:~:text=Young Onset Parkinson's,PD in the United States.
Yes. That is mostly why I posted this because I never had an acute viral or bacterial onset. I just woke up one day feeling the symptoms I still have now. I never had a fever or felt any illness in the begining, which makes it more confusing for me to pinpoint some sort of treatment plan or at least an avenue of testing to pursue. Ive done some tick born testing, but i want to look into additional testing like bartonella etc. Parkinsons disease manifests as a resting tremor, which i dont have. Additionally, muscle rigidity and spasms are very common, which I also dont have. I have considered an atypical MS because a postural tremor can occur with that. Thanks for all the suggestions. I really appreciate it.
 

Apo Sci

Active Member
You're welcome. Rather a tough case. You may want to put a hold on further studies (and debt) until you have a handle on the prognosis.
 

Get Our Free ME/CFS and FM Blog!



New Threads

Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top