To wild_cat!
 

http://emedicine.medscape.com/articl...clinical#a0217

If I were you, I'd go see an endocrinologist. Have them check for parathyroid problems!!

This makes so much sense in light of all of your symptoms. Please read it and let me know what you think. Or just call an endo!

:hug:
Annie

Thank you, Annie. I really appreciate the time you have put into thinking about this, it means a lot! :Heart:

Where I live I cannot see any consultant unless I have a referral from my doctor. At the moment I have been told I will be having no further tests and will see no further consultants.

I wonder how I can approach this matter to my doctor to try and get a referral, without seeming that I have an idea of what is wrong with me? I'd be really grateful for anybody's advice on how to approach making this suggestion. :grouphug:

Where do you live? That would help, for starters. It sounds like you're under the NHS in the UK! ;)

How about you print off the article and highlight the area that discusses what happens to someone when a BP cuff is put on them! Slap a two sentence letter on it and mail it to your primary doctor. And you can say it wasn't even you who thought of it but a patient advocate who thinks the fact that you're not receiving care is BS. :cool:

Your situation makes my blood boil. And I'm an extremely calm person.

You may not have a parathyroid problem but this highlights how unscientific your doctors were being about your reaction to the BP cuff.

Anyone else have any ideas?

Annie

Under "Physical" in the article.

Blood work should show low calcium levels.

I was thinking parathyroid also and mentioned it on the hot chocolate reactive thread.

This is rare, and doctors may not have been trained about it.
For example our CMT poster Kitt on PN has mentioned that CMT is not rare even, but doctors only get about 5 or 10minutes on it in school!

People very low in Vit D also cannot absorb calcium from foods, and may have symptoms. Paresthesias may appear first.
The role of Vit D and the parathyroid is complex.

Here is a link: you may have to read it more than once:
http://www.parathyroid.com/low-vitamin-d.htm

Annie, you are right! I am in the UK, in a remote area, so limited in terms of what medical assistance I can access. I'm worried about printing things from the internet to send to my GP. I fear he may tell me I'm spending too much time on the internet!

I know that I did have slightly low calcium levels when all my symptoms started three years ago. The limits was 2.10-2.60mmol/L and mine was 2.09. It seems fractionally low. They redid the basic blood work in June and this showed normal results, though I was feeling much better then. I asked them to retake it recently when I became bad again and got the new symptoms, but as they were normal in June they don't feel taking another is appropriate.

I find it slightly concerning that since I have this 'unknown' condition, anything else that comes up, however wildly divergent from my normal symptoms, gets lumped into the same category. The fact that they haven't even attempted to assess these new symptoms is quite shocking, I find.

Can these levels fluctuate and affect level of symptoms?

If you have a very low intake of vitamin D or calcium, that might be causing your problems. It is easy enough to take calcium and D3 pills and see if it helps.

I have tried taking Vitamin D recently but I found that it really upset my stomach. I'm quite worried about taking anything at the moment - I seem to be so sensitive to everything!

I'm glad I didn't know it could cause stomach upset or I probably would have had problems! I take it with no problem. At first I thought it helped. Now I suspect it was placebo effect working.

Epidemic low D levels in UK:
 

http://www.dailymail.co.uk/femail/ar...ness-Week.html

My vitamin D thread:
http://neurotalk.psychcentral.com/thread92116.html

There are now therapeutic creams for those who do not
want to use it orally:

http://www.iherb.com/Now-Foods-Vitam...z-118-ml/40277
This seller ships to UK.

Without testing you would need to start at 2grams a day of this cream...best place is to rub some into the inner arms and wrists where skin is the thinnest...so you would get best absorption.
At this rate of use this tube should last 60 days.

Hi

Wild Cat I am in the UK as well and understand the problems.

Is there any way you could change GP surgeries? I had to change my GP as he told me all my symptoms were in my head (because the neurologist said so) but offered no psychiatrist or treatment to resolve my mental health issues. When I told him I knew what was wrong with me - postural orthostatic tachycardia syndrome and Ehlers Danlos Syndrome I was told it was normal for your heart rate to increase by over 30 bpm when standing and I couldnt have EDS as it was too rare. I had also been told no more tests.

At this point I realised I could continue with no treatment, understanding or name for my condition or I could change to a different GP surgery. I was lucky I went onto an EDS forum and found a lady who lived in the same town I did who told me of a GP who knew and understood EDS and POTS. I moved got the tests and never looked back.

How about finding out if there is a UK forum for people with Endo problems or / parathyroid issues (yahoo groups maybe a good place to start) and see if anyone knows of a good gp or endo consultant in your area?

In the past I have contacted consultants directly and some will be naughty and see you privately without a referral if you could afford to do that? looking at £350 without any blood tests etc.

I hope this helps

Rach

I have the same situation where I live in Europe. Shopping around is not an option unless I go abroad and then a seronegative diagnosis is invalid when I get back home again!

There are no private MG specialists and yes there are neuromuscular specialists - but only at the public hospitals and all need referrals. They are mostly satisfied that if you have seen a neurologist at your local hospital then that is enough, and only that neurologist can refer you further to another hospital where you risk to be turned away based on the information in that referral. A local private neurologist told me my hospital really should refer me to one of the 2 public hospitals in the country with MG experience. But that will all depend on my first proper MG related neuro appointment in 5 years of symptoms which will be in March at the local hospital.

I don´t know how people deal with all this extra MG ´paperwork´, it´s like running your own business on top of everything else. 2 years ago I couldn´t have managed any of this.

I TOTALLY understand about treading carefully with adding new symptoms into the mix - you feel like you are sometimes ´using up´ your chances when there are few private alternatives or you are too sick to travel far.

Those new symptoms shouldn´t be left out, wild_cat, and might even give an exceptionally good doctor an exceptionally good clue towards your diagnosis if you could only somehow find one - and somehow you will :)

I admit I am feeling quite well but have resorted to using creative and alternative methods in obtaining the support I might need in the near future....

I decided to initiate contact directly with the one professor & MG specialist in my country by email and almost fell off my chair when I got an answer within 20 minutes of writing! I also found out that he believes a negative SFEMG does not rule out MG. That is real hope! I am over the moon to have gotten responses to a few of my questions - this surely can only happen in a small country! I have proceeded carefully & respectfully with this new opportunity and once again feel confident & equipped to do this well precisely because of having been on a forum like this one!


Anacrusis

Sorry, Mrs. D, but I couldn't sift through the entire "chocolate" thread. ;) It figures you would've already brought that up.

wild_cat, I have no idea how you should go about getting help but an imbalance of any electrolyte can be dangerous. And, yes, if you have do have a parathyroid problem, whatever it is caused by, it can fluctuate electrolyte levels.

Thanks, Rach, for your info. I find it very sad that I can spot a UK patient. Your doctors seem to go from zero to psycho in one appointment. The US docs at least wait two appointments to do that! :cool: This labeling of women with "hysteria" or functional disorders prompted this bit of writing. Sort of sums up how I feel about unscientific doctoring. If you don't like sarcasm, satire or metaphor, you won't like it.

I hope this gives you a laugh, wid_cat. :hug:



A century ago and beyond – although it seems like only yesterday – doctors seriously thought that women were essentially hysterical. The word uterus, which is “hustera” in Greek, translates to the word “hysteria.” Back then, a woman’s uterus was said to migrate around her body. Like doctors now think emotions do. Any new health symptom a woman had was said to have been caused by hysteria, by her uterus affecting whatever part of the body it had migrated to. One theorized etiology of this migration, as deduced by some unknown male doctors, was a lack of intercourse. Or a lack of housework. You’d think that a woman’s monthly bloodletting would’ve purged her of any hysteria.

Unscientific poppycock has roots in the ancient, fictitious country of Prejudicia, which was flanked by the bogus country of Chauvanistica – once momentarily occupied by erroneous Egoistan – and has the proneness to migrate all over the world like a flu pandemic. Or all over a woman’s body. No one usually dies of BS but it can stink for days. Or centuries.

The word “penis” is taken from the Latin word for “tail.” Some think it may be the Latin word “phallus,” as in phallic symbol, but that has been used to describe similar images and not the actual body part itself. It’s also associated with “male potency” and phallic symbols such as tall buildings, riding on the back of a nuclear missile and hoards of other hysterical comparisons. Also well known is the timeless assertion that getting some tail is proclaimed as divine while hysteria is noted as godawful.

Female patients all over the world have many tales to tell of this sort of unscientific doctoring. But now that doctors know this part of the female anatomy is, in fact, not migrating, one has to assume that the only thing hysterical about us women, in addition to how we’re often doctored, is giving birth to the tales in the first place.

Womenopause: If you don’t think sexism is alive and well, you’re not paying attention. There’s no advantage to either sex in keeping it alive, especially not while doctoring. Don’t think it still exists? How many TV ads have male, authority figure voice-overs, often telling women why a product is useful and how to use it? Awareness is the first step towards eradicating sexism. The second step might involve a symbolic big stick.

Ah Annie! That has really made me smile! Thank you! :)
I just started getting published this year and couldn't resist adding something on hysteria in my first paper:

'The attempt to control woman both symbolically and literally during this time was reflected in a pervading fear of the unknown and little understood territory of the female reproductive system. This preoccupation with controlling 'woman' was evident in the catechism hysteria, which connected the menstrual cycle with otherwise 'unexplainable' neurological symptoms. The idea that woman's sexual desire was in some way beyond control was encapsulated in the belief that such symptoms were produced by a 'wandering womb', which detached itself from its proper place and moved up to the neck resulting in feelings of suffocation. Indeed, it was believed that the condition could be cured through 'hysterical paroxysm' or 'pelvic massage', now understood as female orgasm. That sexual reproduction and female sexuality was at the centre of this now widely disproved theory is of great significance in seeking to understand ways in which 'woman' has been categorised, controlled and in some cases, forcibly misunderstood.'

Writing is such a good way to get things off your chest! Ha!

Thank you south blues and Mrs D (is that for vitamin D?!?) for your advice on supplementation. I will give these things a go and see if they help.

I'm certainly finding my new diet is helping. I have managed to identify that sugar and carbohydrates are contributing to making the muscle hyperactivity symptoms much worse. I feel better for avoiding them.

Rach, I did change GP just over a year ago as I moved house. My GP now is very good, understanding and helpful. Unfortunately he is new to the practice and early in his career and his thoughts and opinions on referrals always seems to get over-ruled by more 'senior' members of the team. I'd be sad to leave his care because he has stood by me and done more than most but he obviously doesn't have much control over what the neurologist or other consultants say. I guess I should go and talk to him again. I feel like such a pain in the ******!!!

Anacrusis, I know exactly what you mean about being turned away on the basis of a referral. I have been considering travelling country to get a diagnosis but as you point out – the diagnosis wouldn't be valid when I got back to my own country. :rolleyes:

Has anyone tried home-test kits for electrolyte balance and/or vitamin levels and are they reliable?

:grouphug:

Hi wild cat well I've just had 10months of tests for my parathyroid and yesterday had my last hospital appointment to find my abnormal one.
As for the story it's been a constant fight or struggle to find why my MG is so different and symptoms I changed Drs and he was willing to to start seeing if anything else was their thats how it was found then I was put on a high dose of vitamin D didn't make any difference I have raised calcium and a list of symptoms as for the woman things I didn't understand any of it !!
I do hope you can get your Dr to help find answers for you
Alan:hug:

wild_cat, Congrats on getting published. Yes, writing is very cathartic. It's amazing how many people know and understand this prejudice and yet it's perpetuated in medicine anyway. Disgusting!

They don't really have good electrolyte tests available for purchase yet. And, ideally, it should be done when you are having symptoms. If you do it any other way than in a doctor's office, I can almost hear a doctor pooh-poohing it.

If you feel better after taking "glucose" out of your diet, could you have a glucose related muscular disorder or diabetes?

I'm glad you have a good doctor. Does it really matter what his colleagues have to say? Good grief, the doctors in the U.S. don't have a "pecking order" in place in clinics where they have to defer to their colleagues with more seniority! Maybe have a heart to heart with him after the new year.

Annie

My experimenting with my diet over the last two weeks certainly points to the fact that it is affected by insulin response, though whether it is caused by that or merely exacerbated is another question...

I am finding that no carbohydrate and no sugars means clear speech, a feeling of lightness in my legs that I have not felt for years, a much improved ability to stand (up to seven minutes rather than 30 seconds, a miracle!), and general ease of activities. The problem certainly doesn't go away by keeping this diet but it is noticeably improved.

However, it hasn't gone away. There are still residual walking difficulties and limits on how long I can stand up for or speak.

I find a small amount of sugar gives a good effect -- i.e. improved ability to walk and speak. But I am finding any form of carbohydrate, potatoes, bread etc to cause me to become unintelligible and completely unable to walk within 15-20 minutes of eating. This gradually improves until my speech is back to normal 45mins-1hr symptoms begin with residual effects lasting anywhere from 3 hours upwards depending on quantity etc.

I am losing a lot of weight on this diet and feel terribly depleted, but I will do anything to avoid having another sugar-induced seizure. I'm keeping it clean and trying out one item at a time with a 24-36hr gap either side and keeping a diary for my hospital admission on 15th Jan. Lets hope they listen! :)

Though it´s not the root of the problem really glad you found something that helped temporarily and could act as a further clue to solving your own myasthenic mystery, wild_cat....

The only two dietary experiences that also helped me in my life were the following:

During constant chronic fatigue of M.E. some years ago, whey protein would act like tensilon on my muscles, every single challenge portion would get me from floppy unresponsive ragdoll-like to alert, upright energy in muscles but effect was always shortlived.

During a rather long hypoglycemic phase which often resulted in shaking, slurred speech, and so forth I was able to tame the rough blood sugar seas into the calmest lake imaginable with just the use of dietary modification. Some things I remember: Cut most sugar out/down….protein and not carbs to hit empty stomach first thing in the morning. I also used coconut oil for a 12 month period. Though there is something that can detrimentally affect everyone in all products, this happened to work for me at that time. I can eat anything now but don´t gravitate towards sugar products anyway, everything tastes oversweetened these days.

Good luck on the 15th, (maybe I will visit you after my own pulmonary appointment and they´ll end up keeping us in there together!!!) :holysheep:


Anacrusis :hug: