New Here! My Story And Questions On Pots

[Benny]

Hi everybody! I'm Ben, but my friends call me Benny - either or is fine by me I'm 22 years old and have been experiencing symptoms which I believe to be POTs related for quite a few years. I graduate college this year with a degree in bio-anthropology. I hope to get into to medical within the next 3yrs, and have a keen interest in neurobiology and electrophysiology (amongst other medical things, I'm sort of a medical nerd lol). I love bicycling, reading, motorsports (I race motorcycles in my spare time), and like all kids of my generation - video games.

My Story:

I am generally pretty fit, but have always seemed to have exercise intolerance in the form of palpatations and asthma/asthma like symptoms, even as a child. Running and stair climing have always been really hard for me, though for some reason on bicycles I have no problem keeping my heart rate in my target zone of 149-169bpm. I have had migraine headaches since the age of 11 or 12 years. I was prescribed SSRI's by a neurologist who was more interested in experimenting on me than helping my migraines. I got hooked on those and had to wean myself off, but continued to have migraines into my teens and up until this very day. When I was 18-19 years old I started on Maxalt as an abortive for migraines, but I was having migraines literally everyday and felt like I was having to overdo it on the meds. At this time I also started having dizzy spells, palpatations, random ephemeral tinnitus, facial paresthesia, and pre-syncope feeling. It's sort of embarrassing, but the above listed symptoms seemed to happen right after sex - so much so that if I tried to stand up, or if I already had when the episode would start, I would fall down and have to lay in the supine position. The same dizzy spells also happened while driving - I cannot express how ****** scary that is! Having the world spin around you, feel like you're going to pass out and/or vomit while driving on the highway at 70mph is NOT an enjoyable experience

Anyway, the migraines and dizzy spells persisted for two years until February of 2009...

I started looking into orthostatic intolerance disorders about a year ago when I landed myself in the St. Vincent Heart Center in Indianapolis. I was working out in the gym, doing pull ups (hands above the head caused drop in blood pressure + tachycardia?) to be exact, and had a syncopal episode. I felt palpatations, got the typical blackening vision and got quite dizzy - woke up a few seconds later on the floor with rug burn on my face Long story short, my dad is a physician (internal medicine) and forced me to go to the heart hospital as this was the first (kinda, I'll get to that) fainting spell I'd ever had. At the time I thought all this was a waste of time, it was just over exertion in the gym - nothing more, nothing less. However, I am glad I did go to the hospital and was admitted for 24hr observation (in part because the attending happened to be a cardiologist friend of my dad, who he used to date ). The night prior to this episode of syncope I had taken a dose of Maxalt. I had experienced syncope one other time, when I was 16, but I had chalked it up to a bad combination of the SSRI my doctor had me on for my migraines with herbal sleep supplements - though today I think it might have been POTs related.

While in the Heart Center I was hooked up to EKG and noticed then my resting heart rate was upwards of 85bpm and rose to 120-130bpm IMMEDIATELY upon standing. I also had a head/neck MRI w/ contrast to rule anything head injury or what have you, as well as an echocardiogram and a stress echo - all of which were perfectly normal. Later I had a heart MRI which was also completely normal and two EEG's. The first EEG was a standard awake EEG and came back positive showing some epileptiform activity in my right temporal lobe; however, I was experiencing a migraine during this test and I believe, along with my new neurologist, that the spikewaves could have been from the migraine episode itself. The follow up to that EEG was sleep deprived and it was completely normal, and I didn't have a headache when having it done.

I mentioned the high heart rate upon standing to the on-call cardiologist the next day and he said it wasn't anything to worry about. He put more worry into my cholesterol numbers, which the hospital lab messed up anyway - 245/9 LDL/HDL!!! HAH! 3 weeks later my test came back 125/45, perfectly normal given my genetics. Literally, just standing up to get out of bed would set off the tachycardia alarm on the heart monitor, and no doctor there had an answer for me, or even batted an eye. I told my dad about it later and he knew that it could be a problem, and set me up with another cardiologist to get it checked out. That cardiologist ordered the heart MRI; I had asked him about doing a tilt table at that point, but he was of the less-tests the better mindset - which I can respect, but not when I knew myself, as a patient no less, that I needed a tilt table, hah!

I was worried that the Maxalt had been causing my dizziness and perhaps even this syncope so I asked my second neurologist to switch me to Sumatriptan because I had read that Maxalt has a higher side effect rate and also more readily passes the blood brain barrier due to the relative smaller size of the molecules. Since then I can't say I haven't had a dizzy spell or presyncope, but they have been greatly reduced and I haven't passed out since then. I have had perhaps only one or two dizzy spells and presyncope/palpitations and they have happened post-exercise.

Another year has gone by since then and I've tried a variety of different migraine medications (anticonvulsants), none of which worked. I did my research and decided I wanted to try Verapamil for my migraines as beta blockers were counter indicated due to my asthma (the non-selective BB's like Propranolol seem to more effective than cardiac specific BB's in treating migraines). I'm taking 240mg of time-released Verapamil a day, which is a moderate dose and should be enough to lower my heart rate quite a bit... But recently I started working out again to try and get back into shape as I hadn't felt like going to the gym much after passing out (embarrassed and fearful of another bout of syncope). I bought a heart rate monitor to be safe and not over do it. I put it on and fired it up - and sure enough my resting heart rate was 85bpm, even when on the calcium channel blocker! Not super high, but shouldn't it be lower from my baseline? I stood up and to my surprise my heart rate still shot up to 120+ within a second or so. Also, I have checked my blood pressure while sitting and it is the same as prior to starting the calcium channel blocker.

Luckily, the Verapamil seems to be working at reducing my headaches, and now I am only having migraines 3 days a week which are being treated with sumatriptan nasal spray, oral, or sub-Q depending on the severity. I'm concerned I might have POTs as my symptoms seem to fit, but don't know what to do next.

Symptoms:

*Neurologic/Cardiac*

Dizzy spells

Occasional ephemeral tinnitus

Large heart rate jump upon standing

Palpitations

Pre-syncope feeling

Syncope (two episodes)

Facial parasthesia (like my face has fallen asleep, I also have had tunnel vision with this)

Faint muscle twitching in extremities (sometimes whilst idle my muscles in my legs or arms will "chug" and just sort of bounce around, but it stops as soon as I am no longer idle)

*Gastrointestinal*

Constipation (Verapamil caused)

Gas/bloating (for at least the last year)

*Other*

Exercise intolerance, palpitations upon light jogging or climbing stairs

Asthma or asthma-like shortness of breath with heart palpitations

Left side chest pains (Mostly when I was younger, but sporadically today)

Tests done:

Heart MRI (negative)

Head/Neck MRI (negative)

EKG (sinus rhythm, but fast heart rate)

Echocardiogram (negative)

Stress echo (negative)

EEG 1 (Positive for spike wave in temporal lobe, experiencing a migraine while testing)

EEG 2 (Negative, sleep deprived, no migraine during test)

Blood work (Normal; I'm not sure on what all has been tested in the last 10yrs, but I know my thyroid has been normal every time)

Questions:

-Should I find a cardiologist who will do a tilt table? Won't the Verapamil skew the results if it is working as intended?

-What is my next step? I feel like the Verapamil might be treating some of my POTs like symptoms and because they haven't gotten worse I'm guessing I am not experiencing a huge drop in blood pressure upon standing (maybe endocrine related POTs?).

Any questions for me? Oh, and sorry for the book long post - I just like to be thorough

[firewatcher]

Benny,

Welcome to our autonomically dysfunctional family! I'm sorry that you are here, but glad you found this site, it has been a sanity saver! As for the TTT, there are several places across the US with docs that specialize in autonomic issues. Your symptoms sound very familiar to me, especially the exercise issues. You say you have asthma, but has a pulmonologist actually tested you? I was told that my symptoms were asthma until I actually got tested: no asthma, just extreme tachycardia. Beta blockers have been wonderful (in small doses, as I have supine bradycardia unmedicated.) I get the chronic daily headache too, Klonopin is my drug of choice to manage. For proper testing, you probably would have to come off your meds, but that is the docs decision. What does your dad think about the whole POTS possibility? Does it help that he is a doctor? My dx was at Vanderbilt University, many here have seen Dr. Grubb in Cleveland (?). Welcome again youngster!

[Benny]

Benny,

Welcome to our autonomically dysfunctional family! I'm sorry that you are here, but glad you found this site, it has been a sanity saver! As for the TTT, there are several places across the US with docs that specialize in autonomic issues. Your symptoms sound very familiar to me, especially the exercise issues. You say you have asthma, but has a pulmonologist actually tested you? I was told that my symptoms were asthma until I actually got tested: no asthma, just extreme tachycardia. Beta blockers have been wonderful (in small doses, as I have supine bradycardia unmedicated.) I get the chronic daily headache too, Klonopin is my drug of choice to manage. For proper testing, you probably would have to come off your meds, but that is the docs decision. What does your dad think about the whole POTS possibility? Does it help that he is a doctor? My dx was at Vanderbilt University, many here have seen Dr. Grubb in Cleveland (?). Welcome again youngster!

Thanks for the quick reply

I was hospitalized as a young child for asthma. I was on an albuterol nebulizer daily for the first couple years of my life. When I was a little kid (probably 8-10) I saw an allergist/pulmonologist and they diagnosed me with asthma, low flow using peak flow meter, etc. As I've gotten older my asthma symptoms have subsided and I only have wheezing/coughing or acute asthma attacks when I am sick with cold/flu. I have always thought my exercise related asthma was made worse, or caused by, tachycardia - but haven't really looked into that as a possibility until recently.

I have extreme sensitivity to foods, smells, environmental factors (sound, light, air quality, etc) that all trigger my migraines, but alcohol, benzodiazepines, muscle relaxers, and even some opioids and antibiotics. So yeah, klonopin is out for me, hehe. I'm pretty happy with good ole sumatriptan at this point, it's only once and a rare while where two back to back doses doesn't kick the headache - but when that happens I'm out for at least two days.

lol it's a mixed thing having a doctor for a dad. Often times he's a great resource, but he is also a worry wort and fears the worst while hoping for the best. He agrees with me that POTs is a possible diagnosis for what's going on with me, but he isn't an elecrophysiologist or heart/nervous specialist so he is leery in jumping to conclusions (especially when its his own kid lol). It's great having him there to bounce ideas off of, and he is a really good doctor and keeps himself well educated on a lot of different topics - I love being able to have somebody to talk to on a daily basis who can understand the medical/science junk I surround myself with

ALSO - I forgot a symptom I've had ever since I was a child! I've had left side chest pains in the sternal/costal cartilage region. My pediatrician thought they were just growing pains or costochondritis, but even then in my mind I knew that they were ischemic in nature - nobody took me seriously though. I still have the chest pains occassionally, but not nearly as bad as when I was 10-15 years old. More recently I have developed some tietze's on my mid ribs, actually swollen costal cartilage as opposed to costochonritis which is just pain; very tender, so much so I can't do much of anything during a flare up. After experiencing this i knew that the chest pains I had most predominantly when I was younger were NOT of this nature.

[Angelika_23]

Hi, and welcome to the forum!

I got my diagnoses at Cleveland Clinic, Dr. Grubb (in Toledo, OH) and Vanderbilt. The local docs here in my area just aren't familiar with dysautonomia.

Good luck!

Angela

[McBlonde]

Hi Benny!

I had the exact same experience at the gym! This was back in 2000, before the fatigue hit me like a truck, anyway, before that, I worked out at the gym at least an hour a day. I could do the treadmill, bicycle etc. but not the stair-master. I couldn't do it. I never knew why and I just put it together when I read your post.

The last time I had syncope was there at the gym. I was finished exercising and was standing in front of the towel rack. I suddenly felt like I was going to black out, so I laid down. They immediately took my BP and couldn't get one. They called 911. The EMTs arrived and I remember hearing them as if they were far away saying they couldn't get a BP. The paramedics came in and got me in an ambulance and, I'll never forget this part, they said..."hold on, this is going to hurt." They used a large gauged needle and had the fluids going wide open. I stayed in the ER for a couple of hours. When I was discharged, my BP was still only 68/48 and my discharge diagnosis was anxiety.

I do have endocrine problems that may be at the root of my problems, but I am going to schedule a tilt table test for more information. The horrible headaches were the last symptom to hit me. I am hoping that some info gained from the autonomic specialist will help me get control of these headaches which have turned out to be disabling.

What part of the country do your live in? I was a hospital administrator before I got sick and I am just amazed at how few places there are for diagnosis.

Hope you find answers!

[Benny]

I had the exact same experience at the gym! This was back in 2000, before the fatigue hit me like a truck, anyway, before that, I worked out at the gym at least an hour a day. I could do the treadmill, bicycle etc. but not the stair-master. I couldn't do it. I never knew why and I just put it together when I read your post.

The last time I had syncope was there at the gym. I was finished exercising and was standing in front of the towel rack. I suddenly felt like I was going to black out, so I laid down.

What part of the country do your live in? I was a hospital administrator before I got sick and I am just amazed at how few places there are for diagnosis.

Hope you find answers!

Wow! Sounds almost identical to what happened to me - except I got off the pullup bars and tried to sit down but didn't quite make it to the bench

I live in central Indiana, just north of Indianapolis.

[Christy_D]

We live in St Louis and drive through Indianapolis on our way the have our son treated in Cleveland. I recommend finding a doctor that specializes in autonomic issues. We see a neuro at University Hospital in Cleveland. He gave my son the Tilt Table Test and the Thermoregulartory Sweat Test, along with MRIs and such. It is good to find a doctor that not only diagnoses but is involved with the treatment.

[McBlonde]

Benny, if I were you, I would go to Mayo's Autonomic Center. Here's the link: http://www.mayoclinic.org/neurology-rst/autoneurogroup.html.

I checked with NIH and for a diagnosis, they recommended Dr. Low at Mayo. Since I am in Louisiana, they recommended Dr. Suleman in Dallas to me. They told me their researchers work a lot with both of them. Also, they did recommend absolutely that a patient go to an autonomic specialist in order to get diagnosed with the specific autonomic disorder that they have.

Will your dad support you in going to a place like Mayo?

[Benny]

Will your dad support you in going to a place like Mayo?

Oh, most certainly - I have huge support from both of my parents.

Been busy trying to finish my last year of college up, but have a few mini-updates.

Two weeks ago I had a follow up with my neurologist, who had prescribed me Verapamil for headaches, and after trying an ever increasing doses (up to 480mg/day) I wasn't seeing any decrease in headaches after 3 months. I also discussed with her my thoughts on POTS, but she didn't feel comfortable speculating on a diagnoses and recommended that I seek advice from my cardiologist (who I've seen just once as a follow up after my syncopal/hospitalization in Winter '09). She switched me to an anticonvulsant (Keppra) because I had previously had moderate success while taking Depakote in the past (but has HORRIBLE psychological side effects)... I was weary about trying another anti-epileptic simply because of how the Depakote had made me feel, and also after experiencing the stupifying side effects of a sample pack of Topamax, but I gave it a shot anyway. Needless to say, after a week I was going out of my mind, on edge, and felt super depressed. GO FIGURE!

So, after going off the Verapamil my tachycardia has been MUCH worse and I'm having daily pre-sycope episodes. For instance, today I've had two - one upon standing from a sitting position on the floor and another when getting up from my couch and walking to my patio door. The second episode I happened to have my heart rate monitor on and it was steady around 70bpm while sitting and spiked immediately to 120bpm when I looked down after grabbing onto the counter to keep from falling down.

I think I'm going to call my cardiologist, or have my dad make a professional call to his cardiologist friend, and follow up on the clinics people have recommended on here!

[Benny]

Went to see my cardiologist. EKG in the office was normal, except for a darned high resting heart rate still... Anyway, he set me up with a tilt table this coming Tuesday. Hopefully I can get some answers on what is going on with my body; a diagnosis would be great but not as important as getting my symptoms under control IMO.

I'll post updates Tuesday or Wednesday

[Elfie]

Hey Benny!

I definitely relate to some of your symptoms. I just thought I would say hi, because I am also a recent anthropology graduate, although not biological! My story is similar, started having noticeable symptoms at age 18, migranes at 12, ect. Welcome!

[Benny]

Had my tilt table on Tuesday. I didn't passout or get noticeably dizzy until they gave me the iso, at that point I got the near-syncope I'm so used to and my blood pressure dropped to 70/40 or something.

What's weird is in my office visit with the cardiologist my BP was 140/80, measured while sitting up RIGHT after I was laying down getting my EKG taken. During my ttt my blood pressure was 120-125/60-65, pretty close to perfect, and didn't drop until they gave me a ton of isuprel. However, after all of this I'm still having dizziness upon standing, and my heart rate jumps measurably when standing or when just walking around (carrying 120bpm+ just walking around the house).

My doc is calling me in a script for Bystolic (Nebivolol) and I'm going to give that a whirl and see if it helps not only with my heart rate related stuff, but also my migraines. I've heard good things about bystolic working for migraines, so I hope it helps!

[nmorgen]

I hope the new medicine helps.

[Benny]

Been on the Bystolic for a month and so far.... It works! I haven't had any near syncope since starting at just 5mg once a day, my BP is 120/75 all day every day, and my pulse never goes over 145-150 even when riding my bicycle/running. No side effects that I notice, besides when I first started I felt sort of like my body "energy" (vitality, whatever you wanna call it) was drained from my body but not my mind. Not like it made me sleepy, but just sort of made me feel a little bit more flat.

Also somewhat related I added 20mg Prozac to my daily regiment for mood and also for potential autonomic improvements about 3 weeks ago; it has helped both quite a bit.

...but some bad news, I am fighting back issues and have a ruptured disc and two others that are degenerating... really a crappy situation, being only 22 years old and having the back of a 40 year old smoker (lol that's the way my dad put it when looking at my MRI with me at least).

More updates as they come, and thanks for all the support and knowledge from this site - it's great!

[Noreen]

Been on the Bystolic for a month and so far.... It works! I haven't had any near syncope since starting at just 5mg once a day, my BP is 120/75 all day every day, and my pulse never goes over 145-150 even when riding my bicycle/running. No side effects that I notice, besides when I first started I felt sort of like my body "energy" (vitality, whatever you wanna call it) was drained from my body but not my mind. Not like it made me sleepy, but just sort of made me feel a little bit more flat.

Also somewhat related I added 20mg Prozac to my daily regiment for mood and also for potential autonomic improvements about 3 weeks ago; it has helped both quite a bit.

...but some bad news, I am fighting back issues and have a ruptured disc and two others that are degenerating... really a crappy situation, being only 22 years old and having the back of a 40 year old smoker (lol that's the way my dad put it when looking at my MRI with me at least).

More updates as they come, and thanks for all the support and knowledge from this site - it's great!

Glad the bystolic is helping. My sympathy on your back issues.

How are your migrainess?

[potsgirl]

Hey Benny & Elfie~

I also work in anthropology, concentrating in cultural (mainly American Indian) and archaeological work here in AZ....at least I did, before I had to go on disability. Hope to get there in there soon! Went back to get my MA, so I hate to not use it!

[Benny]

Hey Benny & Elfie~

I also work in anthropology, concentrating in cultural (mainly American Indian) and archaeological work here in AZ....at least I did, before I had to go on disability. Hope to get there in there soon! Went back to get my MA, so I hate to not use it!

Awesome! Due to some other medical stuff (listed below) I won't be finishing my degree till next year some time, but am planning on either anthro grad school (PhD route) or medical school.

---

OK so the last few months have been rough....

I don't know if I have ever even mentioned this symptom on here - but in Jan. 2010 I was diagnosed with degenerating intervetebral discs, and bulges at L5-S1 and L4-L5, both of which were impinging on nerve roots causing sciatica and back pain. I had multiple (re: 5-6) steroid injections in my back which did nothing, a few more diagnostic tests like a discogram, CT, MRI, etc... I got the go ahead to keep exercising in August when I started my bystolic so I got back on my road bike and had some fun. At this point my bulging L5-S1 disc gave out and ruptured I've been in debilitating pain almost all the time, been on narcotic pain killers, lidoderm patches, braces, and in physical therapy since late August to manage my muscle spasms. Unfortunately, the spinal guy my GP sent me to was a quack and just wanted to do minimally invasive stuff, then when he FINALLY recommended surgery to fix my L5-S1 disc he wanted to do some experimental surgery, and do it himself, which would require 8-12 days for insurance to approve. Long story short he never even filed with insurance and I called and went in every week for a MONTH and got the same run around that it would be another week.

I went back to my GP and he sent me to a neurosurgeon who scheduled me for surgery (microdiscectomy) for next Monday, Oct. 25!

Now, while I saw my GP I also had him order an MRI of my C-spine since I have been having some transient arm pain and really bad muscle spasms in my neck which my physical therapist couldn't explain except possible nerve compression from a bulging disc. I took the MRI to my neurosurgeon and he didn't think much of it from a surgical perspective, though he noted C3-C4 and C5-C6 both had minor bulges, and aside from that my discs looked pretty healthy but showed signs of early degeneration (big shock, right!).

This morning I got a phone call for the results of my cervical MRI radiological report ... bad news ... turns out I have a nodule on my thyroid gland and I need an ultra sound immediately! Odds are this is a benign grown and nothing to worry about, but thyroid problems and cancer run in my extended family so I'm a bit worried. I'm way too young to be dealing with ANY of this, let alone a thyroid problem! The only upside to this is that if I'm having thyroid issues that may explain some of my POTS/IST symptoms and I may be able to be medicated differently and have better results.

Also, this may be a recent development, I'm not sure and I would have to look at my last neck MRI which was done almost two years ago. I have lost 25-30lbs since march (I was a little overweight, but not much) without trying, just exercise when I was able to with my bicycle, and lay around the couch flat on my back the rest of the time

---

Right now is a wait and see moment, and I hope all is well and I can put this behind me, get my leg and back pain fixed, and get on the road to recovery by seeing an endocrinologist and rhuematologist about my degenerating spine and POTS/IST/thyroid issues.

[Guest tearose]

Hello, welcome and I am so very sorry for all your ordeal.

I am late here but here with support at this hectic time now and always.

The more you seek answers the more you will have..plus, you will have more questions!

I do hope the surgery on the 25th will alleviate your pain.

Let us know what the ultrasound shows.

hang in there,

tearose

[Sarah4444]

Hi Benny - When I read your posts I was amazed by how many medical issues we have in common. I have had terrible back pain for decades, as well as symptoms that I now know are POTS. I am 40 and started having difficulties as an adolescent - silly of me, as POTS had not been officially "invented" yet. My mother is a physician up here in Canada. I also started to get migraines and thyroid problems in my 30s. I have just been diagnosed with POTS via tilt table test and have also seen a geneticist in Baltimore and been diagnosed with a connective tissue disorder. I live in Northern Ontario and have very limited access to doctors familiar with POTS so like many I am kind of doing trial and error largely on my own. I am trying the MCAD meds right now - have you thought about trying them? I really hope that since you have had a proper diagnosis and can access treatment that you have a positive outcome. I am discovering that treating POTS can be very, very challenging.

[issie]

I don't know if I have ever even mentioned this symptom on here - but in Jan. 2010 I was diagnosed with degenerating intervetebral discs, and bulges at L5-S1 and L4-L5,

Now, while I saw my GP I also had him order an MRI of my C-spine since I have been having some transient arm pain and really bad muscle spasms in my neck which my physical therapist couldn't explain except possible nerve compression from a bulging disc. I took the MRI to my neurosurgeon and he didn't think much of it from a surgical perspective, though he noted C3-C4 and C5-C6 both had minor bulges, and aside from that my discs looked pretty healthy but showed signs of early degeneration (big shock, right!).

This morning I got a phone call for the results of my cervical MRI radiological report ... bad news ... turns out I have a nodule on my thyroid gland and I need an ultra sound immediately! Odds are this is a benign grown and nothing to worry about, but thyroid problems and cancer run in my extended family so I'm a bit worried. I'm way too young to be dealing with ANY of this, let alone a thyroid problem! The only upside to this is that if I'm having thyroid issues that may explain some of my POTS/IST symptoms and I may be able to be medicated differently and have better results.

This sounds familiar. I have degeneration and osteoarthritis too. It does run in my family though.

Also, have a large nodule/tumor on my thyroid too. Had a biopsy and it is fine. My thyroid levels seem to be good too. But, I feel like it must be affecting something. I'm having a time losing weight. Plan to have more testing on this issue. They said it takes up a third of my thyroid. How can that not affect something.

Hope your surgery is a success and you will be out of pain shortly.

Issie

[Benny]

Thanks for all the replies guys/gals! I appreciate the support. I am seeing my cardiologist tomorrow and bringing in my scans...mostly to sort of rub it in his face that he didn't figure it out himself and some nerd-radiologist diagnosed what could be causing my dysautonomia within about 5 minutes of glancing at my scan.

For those of you medical folk, or those educated in reading MRI scans, I have a few images of my structural problems in my back, as well as my thyroid nodules I'd care to share. If anyone with experience with these sort of things has any other comments feel free to chime in, I appreciate any and all comments

MRI scans of my lumbar spine:

L5/S1 - Axial T1

L5/S1 T2 axial

L5/S1 T2 saggital

Saggital 3d myelo in 2d (just cool looking haha!).

Thyroid/cervical spine MRI scans:

What really strikes me, aside from the obvious structural problems, nerve compression, and other such issues...is the absolute dessication of my discs! I am only 23 years old and my discs are as dried up like a 100 year piece of leather My cervical discs aren't quite as bad, but I have developed left arm pain, which is attributed to mild neuroforaminal stenosis and some weird arthritic-looking bony growth at C5-C6 and the sheer disc dessication and lack of thickness at C4-C5. The axial views show a bit more, but are incredibly hard to read (waaaay more going on than in a lumbar MRI haha) so I didn't bother copying any of the down and posting them on the net.

Again, I'd like to reitterate that I appreciate everybody on here listening and actually CARING about me and my condition, something that I have literally had to beg for with the last 4-5 doctors I've seen I will be sure to post up results after my latest rounds of blood work, as well as my back surgery (if/when it gets done,this thyroid stuff could ruin all my plans ).

Peace out - Benny

[Ashelton80]

What conservative methods have you tried? Chiropractic and Decompression would be the first two that come to mind. Surgery would be my absolute very last option after everything else available completely failed, especially at 23 years old.

[Noreen]

Benny-

I second putting off back surgery as long as possible. I didn't see any rheumatology consults listed. The blood work they order tends to be very specialized. Given your age and back pain, I am thinking about Ankylosing Spondylitis. There is an association with AS and other autoimmune diseases and PoTS.

Obviously, I am not a doctor and I could be off base here but your description of flares and your costochrondoitis history lead me to think this should be investigated.

wishing you the best,

noreen

[issie]

Benny-
I second putting off back surgery as long as possible. I didn't see any rheumatology consults listed. The blood work they order tends to be very specialized. Given your age and back pain, I am thinking about Ankylosing Spondylitis. There is an association with AS and other autoimmune diseases and PoTS.

Obviously, I am not a doctor and I could be off base here but your description of flares and your costochrondoitis history lead me to think this should be investigated.

wishing you the best,
noreen

I'm no doc either but I second the Ankylosing Spondylitis. It looks like how my dad's x-rays look. If it's that - you can't do manipulation because all the bones are fused together. Do you find that you are very stiff and can barely bend? Hurts to move your head around, have headaches etc..... Can't bend and curl your back? You do need to go to a rheuatologist for this. It can also be inherited. I have signs of it starting in my lower back, but I'm quite a bit older than you. So, at your young age get it checked out. "You know, King Tut was said to have this. So, you could be amongst royalty."

Feeling for you. Hoping for you to get some relief soon. Keep us posted.

[babettess]

Benny,

Just wanted to tell you that I also had a thyroid nodule found during my cervical MRI. What happened in my case was that I had to have a thyroid ultrasound and since the nodule was under a certain size (sorry I can't remember what that was), we just watched it. I had blood work to check out my thyroid function. Then I have had ultrasounds every 6 months for a total of 2 years and now we will watch it once more in a year and if it still hasn't grown, we will quit watching it.

Just wanted to tell you that sometimes the nodules are nothing to worry about. Hope yours turns out to be like mine and you just have to keep an eye on it.

Also best wishes for finding a doctor to treat your neck issues.

Babette