tjunderw

Other Conditions/illnesses You Have?

37 posts in this topic

the memory loss and fatigue i can relate to.  i dont like not remembering if i showered in the morning..i forget by the evening. i talked with my doctor and all i got told was be ready...this doesnt get better when you age, it gets worse.  made me feel like i already had one foot in the grave.  i just do it one day at  a time.  if i need to nap, i nap.my biggest problem is i get so tired at dinner time its hard to cook sometimes, i've already fell asleep at the stove once, knocked a saucepan over, thank god it didnt land on me.  scarey sometimes during the day when im home alone and i feel seizures coming on.  i try and get to a safe place..sometimes i dont make it.  i've already fallen down the stairs because of cataplexic attacks as i was going down them.  im just greatful that i havent broken anything, just have had some concussions over the years.  i have the seizures when i have the cataplexy attacks, just not always.  i think its a matter of how much stress im under at the time of the attacks.

my b12 was basically non existant so am on 1000 mg per day for that. i did just now found out that my cholesterol is way high.  dont know how that is, i dont eat enough to make it high. not sure what is related to what anymore. doctors dont seem to know either.  neurologist just says im not epileptic so they cant do anything for me and my seizures.  psychiatrist says i need to go to the neurologist to find out about seizures...been trying to explain to her i've been to one 3 times and nothing is found.  dont know who to turn to next. 

You should definitely go to the Mayo Clinic in Rochester, Minnesota. I know this may sound drastic, but I promise this is exactly where you need to be!

 

My mom and I flew out there from south Georgia 2 separate times during the summer of 2010, and this is where I finally received my narcolepsy diagnosis. Before going up there, my life was just a run-around game... going to different specialists- psychiatrist, endocrinologist, internist, etc... trying to figure out what was going on with me. It should NOT be the patient's job to figure out what type of doctor they should go to or what may be wrong with them, but that's unfortunately just how it happen sometimes.

 

Well, at Mayo Clinic, you first meet with the general internist who is EXTREMELY thorough and schedules to see pretty much any type of doctor/ specialist that may be necessary or appropriate. And, then you are given a printed schedule of all your appointments for the week (they try & fit as many in as possible). You are literally going to appointments all day long, but they are SO efficient, and all the docs are at the Mayo Clinic in a couple of buildings all right there together. So, you don't even drive anywhere. If every medical facility were run like this place is, life would be a heck of a lot easier. I was seen by everyone from a neurologist to a psychiatrist to an eye doctor to a sleep specialist and had all sorts of tests done (the overnight sleep test & MSLT of course, a cardiac stress test, every type of blood work done you can imagine, allergy tests, MRI of my brain, adrenal challenge, etc.).

 

I hope you will consider going. Especially if you have insurance! We had to fight a little back-and-forth w/my insurance, but they ended up paying for ALL of it! And, if/ when you do go, you will thank God for a place like Mayo Clinic existing and kick yourself a little for not having gone already.

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I am diagnosed with Narocolepsy without Cataplexy.

 

In addition, I also have the following:

 

Endocrine

Polycystic Ovarian Syndrome (PCOS) - w/insulin resistance

Hypothyroidism

 

Dermological

Dermatographic Urticaria
Nummular Eczema
Livedo Reticularis

 

Recurring Infections (tend to flair up 2 times a year)

Sinus infections (usually dealing with allergy season)

Styes / Eyelid irritation

Canker sores

Ear infections

 

Other

Thoracic Outlet Syndrome/Pec Minor Syndrome
Knee Subluxation
Pelvic Misalignment
Nearsighted (Corrected via PRK surgery)
 

 

drago

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Here is some trivia I have learned that may be helpful:

Tinnitus can be related to mild Cataplexy. The changes in muscle tone can cause a ringing- similar to how C can cause blurry or double vision.

Over-exertion can be a trigger for Cataplexy. Sudden effort brings on Cataplexy, although sustained moderate effort is not a problem. Cataplexy can also be induced by exercise. I often get mild C after a run, but not during a run- my knees get wobbly. This is different from the normal "my legs are tired" feeling.

ENT issues are part of my life as well.

And ironically... i just realized when i got my first C attack.... i randomly just went down while running, and i could see and hear everyone freaking but couldnt do anything... they sent me to the er but never could determine a cause.. not even dehydration .. (although they did discover a murmer and some sort of arrythmia..i cant recall what kind.. army tends to disuade you from seeking treatment sometimes for fear of your career suddenly being cut short) .. not to side track but thank you for making that light bulb come on in my head..lol... 

to the original post.. i too suffer from multiple health issues ... migranes, degenerative disk disease, weak bones, tremors (of unknown origin) , hashimotos thyroiditis , severe anxiety, panic disorder, ptsd (obviously not narcolepsy related but its there) depression, recently i've become almost agoraphobic.. and up to about two months ago when i realized what was happening and forced myself to start essentially exposure therapy (with meds to help)I had become almost entirely a shut in..leaving my house ONLY to go to work .. but ive been working hard to make at least that part better.. anyway.. i went outside for a minute and lost my train of thought so ill stop here.. hope i helped some lol

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It's nice to know I'm not the only one!  I just found out, a little over a month ago, that apparently I'm narcoleptic.  I'm still trying to wrap my head around everything.  In some ways it's a relief to know that things I've been experiencing are real and I'm NOT crazy.  Additionally, I thought I was the only one falling apart so badly!

 

Here's my list (at least what I can remember right now):

 

-Scalp psoriasis (history - caused by stress)

-Ocular migraines (not like headache migraines - I get a pressure behind my right eye and things go a little blurry, but no pain - cause thought to be stress related by eye dr)

-Chronic upper respiratory infections & occasional tonsilitis

       *Had sinus surgery but still get sick monthly

-Bruxism (made worse by stress)

-Occasional trouble breathing - many years - diaphragm won't expand - been told I have "asthmatic symptoms" and was given an inhaler, which works only for this issue

-Occasional trouble breathing - a little over a year - like a pressure/thickness in my chest - dr's don't know and won't listen to me - self dx caused by stress

-Esophagitis (history)

-Non-bleeding ulcers (history)

-IBS (made worse by stress)

-Occassional acid reflux

-Chronic hives - "urticaria" - MANY YEARS - diagnosed by 2 dermatologists - caused by and made worse by stress

-Raynaud's syndrome (not disease) in my hands (history)

-Nerve pinching in my neck

-Right shoulder pain - sometimes extending down my arm - now believed by new dr to be coming from my neck

-Congenital Spinal Stenosis & nerve pinching in my low back - pain extends down both legs

       *received an epidural and radiofrequency heat ablation (they killed nerves in my back)

-Cystic ovaries

-HPV (history)

-Plantar fasciitis (history)

-Developing arthritis in my right foot

-Anxiety - untreated

-Depression (history)

-Past bloodwork indicated Mono & Epstein-barr - though I never knew when they'd happened

-MVP w/gurg (discovered by accident about a year ago and I'm told it's nothing to worry about and so mild I wouldn't even notice it - even though I sometimes feel my heart flutter)

-Years of sleeping problems

-Recent diagnosis of Narcolepsy w/Cataplexy (though I have no recollection of C attacks, though my fiance notices them - he says they're mild, but they're there)

      *sleep paralysis, sleep attacks during the day, sometimes I feel things crawling on my skin while awake, trouble falling asleep/staying asleep/waking up, etc.

-Recent in depth bloodwork indicated slightly high thyroid level - have yet to get to the bottom of this one

 

I'm sure there's more, but this is everything I can rattle off the top of my head!  I have more drs than I can count and the list is ever growing.  I wish someone would just sit down and look at me as a whole rather than taking a problem I'm having and sending me off to another specialist to deal with that problem.  I'm frustrated and my doctors don't LISTEN TO ME.  I just keep getting shuffled around offices and sent for tests.  Everyone finds nothing and tells me to come back for followups.

 

I'm sorry this is so long, but I'm feeling very alone and isolated and frustrated and tired.  I just don't know what to do with myself anymore :-(

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It's nice to know I'm not the only one!  I just found out, a little over a month ago, that apparently I'm narcoleptic.  I'm still trying to wrap my head around everything.  In some ways it's a relief to know that things I've been experiencing are real and I'm NOT crazy.  Additionally, I thought I was the only one falling apart so badly!

 

Here's my list (at least what I can remember right now):

 

-Scalp psoriasis (history - caused by stress)

-Ocular migraines (not like headache migraines - I get a pressure behind my right eye and things go a little blurry, but no pain - cause thought to be stress related by eye dr)

-Chronic upper respiratory infections & occasional tonsilitis

       *Had sinus surgery but still get sick monthly

-Bruxism (made worse by stress)

-Occasional trouble breathing - many years - diaphragm won't expand - been told I have "asthmatic symptoms" and was given an inhaler, which works only for this issue

-Occasional trouble breathing - a little over a year - like a pressure/thickness in my chest - dr's don't know and won't listen to me - self dx caused by stress

-Esophagitis (history)

-Non-bleeding ulcers (history)

-IBS (made worse by stress)

-Occassional acid reflux

-Chronic hives - "urticaria" - MANY YEARS - diagnosed by 2 dermatologists - caused by and made worse by stress

-Raynaud's syndrome (not disease) in my hands (history)

-Nerve pinching in my neck

-Right shoulder pain - sometimes extending down my arm - now believed by new dr to be coming from my neck

-Congenital Spinal Stenosis & nerve pinching in my low back - pain extends down both legs

       *received an epidural and radiofrequency heat ablation (they killed nerves in my back)

-Cystic ovaries

-HPV (history)

-Plantar fasciitis (history)

-Developing arthritis in my right foot

-Anxiety - untreated

-Depression (history)

-Past bloodwork indicated Mono & Epstein-barr - though I never knew when they'd happened

-MVP w/gurg (discovered by accident about a year ago and I'm told it's nothing to worry about and so mild I wouldn't even notice it - even though I sometimes feel my heart flutter)

-Years of sleeping problems

-Recent diagnosis of Narcolepsy w/Cataplexy (though I have no recollection of C attacks, though my fiance notices them - he says they're mild, but they're there)

      *sleep paralysis, sleep attacks during the day, sometimes I feel things crawling on my skin while awake, trouble falling asleep/staying asleep/waking up, etc.

-Recent in depth bloodwork indicated slightly high thyroid level - have yet to get to the bottom of this one

 

I'm sure there's more, but this is everything I can rattle off the top of my head!  I have more drs than I can count and the list is ever growing.  I wish someone would just sit down and look at me as a whole rather than taking a problem I'm having and sending me off to another specialist to deal with that problem.  I'm frustrated and my doctors don't LISTEN TO ME.  I just keep getting shuffled around offices and sent for tests.  Everyone finds nothing and tells me to come back for followups.

 

I'm sorry this is so long, but I'm feeling very alone and isolated and frustrated and tired.  I just don't know what to do with myself anymore :-(

To "ApparentlyNarcoleptic":

I will give you the same advice I gave to "ikon0304" above and encourage you to consider going to the Mayo Clinic in Rochester, Minnesota!!

 

From my personal experiences of doing the 'run-around' and going to all these different specialists, I understand how you are feeling! After several years of doing this, I finally discovered the Mayo Clinic. And, this is where I finally received my narcolepsy diagnosis.

 

As I said above, when you go to the Mayo Clinic, you meet first with a general internist who is very thorough and sets you up to see all of the people they deem necessary, but everybody is in the same buildings and have access to the same patient information. It is such a relief to feel like all of your issues are being adequately addressed and a common connection (if one exists) is considered by looking at the WHOLE picture. 

 

Please consider looking into going. It was such a blessing after so many years of frustration and vague 'answers'.

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How would I go about that?  And how long would I be there?  It's difficult for me to take time off from work, so I would have to do it during scheduled breaks.  Also, my fiance would need to take time off to go with me - which is more difficult.  AND we're getting married in October, so time and finances are very limited.  As much information as you can provide would be appreciated so I can make a well educated decision.  Thanks

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MCP, I 2nd you on the Mayo Clinic in Rochester, MN advice...  However, I'd add (as from what was my experience) that don't get your hopes up too high, in regards to their being 'necessarily' both satisfying answers and/or any cure (or even close -remember, we are all different and drugs effect each of us, in different variable ways, some work for some and don't work for others).

 

I'd gone to that Mayo at 2 to 3 months old after severe seizures were occurring over and over, doctors around my state (the best of in the state) had told my parents over and over, "your son appears to be perfectly healthy and normal besides the epileptic seizures"...  Within 24 hours at Mayo they'd narrowed my problem down to what was, 'Severe Hyperinsulinemia Hypoglycemia' caused by an overgrowth of insulin islets on my pancreas, so I stayed there for around another month being monitored before having a 'Pancreatectomy' 90%+ of my Pancreas removed; which balanced me out for years to come.  So, at 30 after having years of collapsing and a hellish year of medical experiences, again in my state, consisting of surgeries and my Cataplexy escalating to 5-20 collapses a day from trying to tolerate over months a sleep breathing device for a minimal-moderate 'Idiopathic Central Sleep Apnea' that appeared on my first 'Polysomnography' (sleep study for Narcolepsy); I'd gone through some hell and doctors were not hearing/listening to me, so I made the decision (with my GP backing me) to go to Mayo once again.

I had to call them and set things up, my doctors referral got me in a bit quicker (as did having a history there) but it still was around a 6 month wait and I do believe the waiting list can be a year or more with referral; so that's a head's up, it won't be quick unless perhaps you just go there, showing up out of the blue, and trying to be worked in.

 

What I got from my 3 week stay (in a hotel - rough) was seen by neurologist, the sleep lab and an ENT; I do wish they'd have sent me to other doctors, spine specialist/endocronologist/rheumatologist, but they like to cover things in their own order and the 3 weeks only got me so far.  I did get a 'Probable Narcolepsy with Cataplexy' (with definite Cataplexy) diagnosis, a 'Delayed Sleep Onset' (something like that) diagnosis, was told 'the sleep breathing devices were not benefiting me and to get off of them' (for insurance concerns this was huge for me) and what I'd really wanted was what I got:  a solid discussion 'straight forward' going back and forth conversation diving deeply into Narcolepsy with Cataplexy, seconding and confirmation of what my condition was (Epilepsy test ruled out Epilepsy), discussed the 'Idiopathic Central Sleep Apnea' deeply as well, the neurologist mentioned numerous times I seem to have something musculo-skeletal going on, the ENT gave me great advice ('use sesame oil in nose and throat for moistening and mineral oil in ears for cleaning' - cautiously and minimally).  So, in the end it was what it was.  I left with a better grasp and understanding to both myself and the disease, however I left with no cure or great leaps, but getting off the sleep breathing device did gradually (over many months) decline my Cataplexy back to 'more or less' were it had been.  Oh, and it cost a lot of money in the end, of course -sigh-...

 

The best thing I've found for helping all of my conditions combined, to put it quick and lightly seems to be: food based adjustments as well as stress eliminating and also daily stretches/exercises along with walks daily...

 

The best of luck.

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I appreciate the suggestion of the Mayo clinic - but for now I need to be realistic.  There is no time and no money for that trip.  Perhaps if things straighten out and get better after the wedding I can start the process - but that is still many months away and contingent on a lot of other factors.  But thank you for your advice :-)

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Interesting listing, Dr. House would be proud, and interested in these trends, here's mine:

 

30 years of intense IBS w/constipation, 30mm poylp on descending colon found and removed in 2009 by colon resection surgery (all symptoms almost completely resolved from surgery).

Stabismus and total lack of 3-D vision.

Harsh photosensitivity disorder to any type of light flicker of any frequency, creates seasickness.

Some mold and pollen allergies.

Poor tooth enamal from birth.

Narcolepsy, with cataplexy about once a month, triggered by exhaustion/lack of sleep.

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My Medical Dx: 

 

MGUS which is linked to CTD Connective Tissue Disease

Cartilage loss in R. Shoulder after  non trauma related shoulder ball socket detached which now I have been diagnosed Chondromalacia due to cartilidge loss due to being misdiagnosed. 

I would like to know if any other Narcolepsy Cataplexy members have pain that interferes with there with quality of life. They can not do Shoulder replacement due to misdiagnosed for so long and damage it did and surgery (Bankart Repair , SLAP2 and extensive debridement. 

I am going to ask for Palliative Pain Care due to too many symptoms causing diminished life . 

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My Medical Dx: 

 

MGUS which is linked to CTD Connective Tissue Disease

Cartilage loss in R. Shoulder after  non trauma related shoulder ball socket detached which now I have been diagnosed Chondromalacia due to cartilidge loss due to being misdiagnosed. 

I would like to know if any other Narcolepsy Cataplexy members have pain that interferes with there with quality of life. They can not do Shoulder replacement due to misdiagnosed for so long and damage it did and surgery (Bankart Repair , SLAP2 and extensive debridement. 

I am going to ask for Palliative Pain Care due to too many symptoms causing diminished life . 

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My Medical Dx: 

 

MGUS which is linked to CTD Connective Tissue Disease

Cartilage loss in R. Shoulder after  non trauma related shoulder ball socket detached which now I have been diagnosed Chondromalacia due to cartilidge loss due to being misdiagnosed. 

I would like to know if any other Narcolepsy Cataplexy members have pain that interferes with there with quality of life. They can not do Shoulder replacement due to misdiagnosed for so long and damage it did and surgery (Bankart Repair , SLAP2 and extensive debridement. 

I am going to ask for Palliative Pain Care due to too many symptoms causing diminished life . 

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