new here /dx entwined include EDS/Chiari /Multiple Sclerosis /POTS /others- need help!

[sarah in paradise]

Hi – I’m new here , and trying to make sense of what to try now -my local physicians are saying it’s all to complex -entwined -and beyond their scope of understanding ( at least honest today in saying so -smiles ) .

my diagnostic history includes ( all confirmed by true experts )
Ehlers Danlos ( not sure of the current typing – was told mixed features of hypermoblity and clasic at time of dx at NIH a few years back -trying to find out now if they got any genetics info back on me , because later my daughter with eds /cancer diagnosis was told our type was now known -but I don’t have that info -no records sent after I went to the study ) .

chiari malformation decompresion done 15 years ago -,”failed chiari with craniocervical instablity dx 8 or so years back , empty sella syndrome with autonomic disfunction ect, –I am to see a neurosurgeon working in this research next month for reaccessment .

Multiple sclerosis ( confirmed at three university’s independently while in the muddled up mix of ms and chiari at once ( before ties were known ) – more recently reconfirmed at NIH , and both acm and ms –confirmed by national panel of chiari specialists as the study case during yearly meeting . concensus did include both acm and ms – just details of other bits brought strong disagreement between em .

chose to go off ms imuno mod meds , when it became clear to specialists it’s not “normal “ms , and I was having huge side effects with all they tried ( no study’s relating to eds entwiment have been done to my knowledge )

POTS-severe in cardiac expression currently –PT in warm water therapy says only safe effort to try and reverse any deconditioning I think is perhaps a part -can be done in water only since my heart is at 80% capasity trying to stand up two mins duration now – getting weaker in trying to stay seated upright /and hold spine stright to breath in deep relaxation efforts ect, loosing muscle strenght by the week now ( can walk briefly )

What to me– seems like the pituitary gland abruptly releasing big bursts of chemicals – can feel a wiggle sensation at the level of the sella – then within seconds a cascade of symptoms onset from the head , going down the chakra levels one by one , ( take a deep breath and hold ON for the heart slam sensation-then VERY rapid pulse ( averages around 110-120 at rest anyway –so this goes WAY up fast) , then down to the burning stomache with coals stuck inside , then the bladder ( no normal sensation due to ms impacts – but this IS urgency with no strenght to get up and get anywhere – I use timed voids given lack of bladder sensation ) – then on down that spine , and joy of joy – as this all fades /the massive drenching sweats hit /with profound weakness( ms and heat ?) –then chills about the time I can grab a towel to dry off some …..at its worst frequency about 15 mins apart ALL night /day -currently at a lower level of impacts ( less severe intensity-freq)-most an hour or so apart now .

three months ago – I stumbled onto some of the info that led me here –and started to understand possible mast cell ties . I went to no gmo -organic diet /and have been trying to find any food allergy /sensativity triggers through slow elimination – my gut seems ok actually to my understanding of normal –but huge allergy /mast cell stuff in other
asthma, dermagraphia , presure welting of skin ,many many known allergens through both anaphaltic and serious reactions including /contrast mediums like iodine , sulfa drugs , many antibiotics , latex, ( some allergy testing perhaps invalid in that the allergist said gosh , were not going to finish this – you welt to everything – gosh dermagraphia ? lol – little pricks do turn to big circles in me .

ok -diet seems to be helping internal sensations of both inflamation in joints ect , –

I spent the last two months seeing four doctors the local clinic insisted I see , with the hope each could offer some help or insight
cardiolgist=says POTS ,but not wanting to offer any medication to try and help -see the nsg

neurologist says ms is not connected with mast cell activity to her knowledge , and since I don’t want any of the ms immunomodulating meds / I’m going to be facinating to watch and see what happens with the decsions I’m making -see the nsg for chiari /craniocervical instablity ect

primary care doesn’t know eds , chiari /cci , mast cells ( I would guess molecular pharmo genetics ect are all beyond his learning in the last 30 years now ) ,stuck given the CA revamp of health delivery in this area -can’t find anyone outside rural medicine clinic setting willing to take my kind of situation on with insurance I have-and be in the ER catchment coverage /practice area .

while they say -they can and will handle complex chronic cases /situations as state and feds insurance transformation takes place – they tell me confidentally they just can’t do so – don’t have the resources or physican specialist acess or understanding or time – none of it .

so – I’m on my own here-diamox seems potentially a problem given my sulfa allergy ??

will be starting z and z meds this week– don’t know details of flavinoid suplement use well ( can I get these at low cost over the counter) – no one I’ve found knows the use of the nonhydrolized licorace distilation –, cardiolgist says no meds , things are too complex to try —

given the eds /ms and chiari ties -I would guess the mast cell stablisers are a big need here– can anyone give me more insight ( and sorry this is sooo long -but seemed better than to little of the detail too ) …in short – I’m in deep crap at the moment=needing some sort of rescue -flotation devise to reach bliss instead !

VERY glad to have found others with some of the same journey in all this combined ==and greatful your all sharing info !

Thanks -Sarah in Paradise ( freeze dried hippie sort – in a mountian town of this lovely name Paradise)

[Barbara]

Hi Sarah,
It’s Barbara (from Chiari Connection International – Yahoo forum) good to see you on here!

I think most of us end up with physicians saying (or thinking) it’s too complex! The health systems are not designed to accommodate us really (in any country!). . . . and, whilst they get paid the same whether they ‘deal’ with us or not, this offers no incentive for them to help us. There are some wonderful people that will ‘stick their neck out’ but these are few and far between!

I may be wrong but I see indications that that’s all changing, so the ones who have listened to us (and believed us) and have embraced new science and trialed various protocols to help us, will indeed shine very brightly indeed! After all, we’re not really a minority group, there are millions of us worldwide, desperate for effective help.

So to summarise, you’re:
EDS
Chiari decompressed (unsuccessful?) 15 yrs ago
Craniocervical instablity (have you had fixation surgery ?)
Empty Sella Syndrome (have you been fully assessed by an endocrinologist for hypopituitarism ?)
Autonomic Dysfunction (POTS what type ? Have you found any effective treatment for this ?)
MS (Any effective treatment for this ? What made them determine it’s not ‘normal MS’?)

* You say you’re low in energy, are you supplementing B Vitamins ?
* You say you are loosing muscle strength, have you tried CoEnzyme Q10 &/or L-Carnitine ?
* The ‘wiggle’ sensation intrigues me, although you relate it to your pituitary, could it be circulatory ?
* Have you had your arteries or veins imaged ?
* Has anyone tested your adrenal glands ?

I’m having difficulty spotting all four disciplines of the recent doctors you were sent to see – I get cardio, neuro, neurosurgeon – who else ? Is the neurosurgeon Dr B at TCI ?

The sulpha allergy has been raised before, some doctors give Diamox anyway. Is the allergic reaction worse (or more dangerous) than having your brain compressed, that’s how I’d look at it. Is it worth a 3 day trial ? As long as your Potassium and Bicarb levels are ok (and your body is not too acid) you will probably know, in a short time, whether it’s helping.
Regards
Barbara
(UK)

[Dr. Diana]

Barb has great questions and comments! We’ll eagerly await your answers. You’re ‘one of us’, certainly. I’d love to see a “symptoms checklist” from you to help you figure this out. If you DO have symptoms of high intracranial pressure (which can be almost identical to those of low pressure due to a spinal leak), Diamox may be a great diagnostic tool. There are plenty of publications about why allergies to supha antibiotics do not ‘transfer’ to Diamox, so it is not off the table. I have yet to meet a patient with MS who has not benefited from it, actually. Gentle hugs…

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