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Avatar universal

Introducing myself

I just wanted to say hi to all and to introduce myself. I'll try to give my story as briefly as I can, but it's a bit convoluted and somedays, I don't quite understand myself what is/has been happening! I've been sick for a little over three years now. I have some answers but I feel very strongly that there are more to be found.

The confusing part of my story is that I have  a couple of different conditions and I'm only now beginning to differentiate what symptoms go with what and which others don't make any sense. I have a fabulous GP who has fought for me quite a bit since this whole thing began so hopefully we'll get somewhere soon! It's been a long journey already My first consultant was an arrogantmoron who insisted that all the symptoms I had were normal, and refused to run any tests at all until I had reached the point where I was too ill to lift my head myself and lung fuction had gotten very low. Anyhow once tests were carried out, I was diagnosed with multiple pulmonary emboli in both lungs, bronchiectasis, and Addison's disease. I've always had asthma but it had became very difficult to control since all this began, but I now have a very capable and lovely pulmonary doctor and endocrinologist who are doing their best for me. So some things are going right!

Not knowing much about it, I've been blaming a lot of what's been happening to me on Addison's, but I have begun to realise that quite a lot of what's happening is occurring at times when I'm not deficient in steroids. My muscles periodically stop working. To the extent that I can't get myself out of the bath, brush my own hair or take coins out of my purse. Some days I can't even type properly. I have trouble walking, climbing stairs, and my leg muscles have just given way on more than one occasion and left me smack on the floor. Not fun! I've gotten very clumsy of late, I keep dropping things, no longer have the coordination to do finely detailed drawings and don't seem to be able to guage distances anymore. I've been surprised on a number of occasions to find that I have walked into the wall instead of through the door, or tripped over something that I could see and thought I was bypassing. My family, friends and boyfriend are fantastic and really look out for me. I do resent the last of independence and mobility that this illness has brought on though and I hate seeing them look so worried all the time.

I don't know what's causing all of this. My dr thinks MS is one likelihood so has referred me to a nneurologist. I saw him (the neurologist) this week for the first time, and I don't really like him so far, but I'll give him the benefit of the doubt for now as I'm probably a little wary of doctors after my experiences with the first consultant. I will say though that he has all the personality and people skills of a blank CD.....

Anyhow, thanks for taking the time to read my story, and sorry it's so long-winded!!

best,

Snowflake
30 Responses
199980 tn?1233801004
I just dwanted to welcome you to medhelp......
I hope your neuro. will run the proper test to try to figure out what is really going on with you.
please keep us updated.
good luck to you.
april
195469 tn?1388326488
Let me welcome you to the MS Forum.  I truly believe you will make instant friends here and long lasting friends.  We will be here for you through every step of this sometimes long process and will offer you care and compassion, beyond measure.

I am so glad that you have posted and hope that you will join our little group of what I have always called, "Angels with Invisible Wings."  I am baised, but I truly believe this is the greatest group of human beings on the entire Internet.  Each and every member gives 100% to this forum and will help anyone in need.

AGain welcome, Snoflake and hopefully you will lean on all the soft shoulders of everyone here.  Please feel free to just jump right in.  Once you see what this forum has to offer, I am sure you will say that you have found a "New Home."

WELCOME,
Heather
220917 tn?1309788081
Hi, again!

Long-winded!  You haven't met Quix yet, our resident physician and epic post-writer.  We love long-winded here!  (And Quix!)

Boy, you have a lot going on.  I'm sorry you have so much to deal with!  The only thing I know about Addison's is what I've read in John F. Kennedy biographies.  That's an adrenal gland dysfunction, isn't it?  Quite painful, right?  Causes all sorts of maladies.

I'm at work right now and the boss dragon-lady is hovering, so I must keep it short.  Will catch up with you later.  Glad you're here!

Feel well!

Zilla*
Avatar universal
I join with the other good souls here to welcome you. Whether or not you turn out to have MS, you will find this crew helpful, supportive and fun.

Please keep us posted about your tests and progression. The neuro should be doing a great battery of tests and a thorough exam. We have good descriptions here of what these should be like. So do ask any questions you may have.

ess
386185 tn?1218053498
welcome to the best forum .with the most kind and supportive people
ever ,they are here no matter what .,and will try and help with anything and everything
welcome once again to the ms forum

love sheila
Avatar universal
Thank you so much for the warm welcome! It's great to have found you all. Zilla, you're absolutely right, Addison's is when the adrenal cortex stops producing what it should. I'm very impressed - most people have never heard of it!

Part of the reason I didn't really like the neuro I saw was that he treated me like an idiot and refused to tell me what tests he was going to do or discuss much of anything, despite questioning! It seemed a bit pointless to be so covert about it all as he then handed me the forms for bloods and an mri, and I can read....

From what I can make out, he's requested ESR,(for inflammation?) B12 and Folate (even though I told him that I know my B12 is a little low usually but that I don't have intrinsic factor antibodies so it' s not pernicious anaemia - he just got snotty and told me to have my other drs send on my history to him.) He also requested anti-acetyl choline receptor antibody and CK (don't know what that is). I'm to have an MRI brain next week. Written on the bottom of that form was a query to the radiographer as to whether or not, there's evidence of a stroke... I thought it was a little rude not to have mentioned that to me, but maybe that's just procedure? Are these the tests you guys would expect?

Many thanks!

Snowflake
382218 tn?1341185087
My understanding of CK (creatine kinase) is that elevated levels can be indicative of muscle damage, either from chronic disease or injury.  Antiacetylcholine receptor antibody activity will be higher in individuals with Myasthenia Gravis.  I believe these tests along with the others you mentioned would typically be ordered when trying to determine a diagnosis to account for the symptoms you are experiencing.

I agree, it would have been nice for your doctor to mention his suspicion of (or desire to rule out) the possibility of stroke.  I suppose he probably didn't want to alarm you, but as you say, given you can read, it would have been more helpful for him to have been up front about this with you.  If he continues to deal with you in this manner, consider requesting a referral to see someone else.  It's important to be followed by someone who sees you as a partner in the process, and will listen to you and answer questions as best as they can.  I am wary of doctors who seem to prefer patients who simply do what they are told, with no questions asked.  A good doctor will engage the patient and work with them to find answers.

Hope you find some answers soon.

db1
Avatar universal
Red flag about this doctor! He is arrogant in the extreme. Who the H does he think he is? I'm surprised he didn't make you bow while walking backwards out of his office.

My advice is to continue on with him until these tests are done and evaluated. (There are others as well, there being a lot of MS mimics to rule out.) But unless he shapes up considerably after this battery of tests, I would take the reports and run to someone you can work with, no matter what the test results. If you have MS, would you want this charmer treating you?

ess
Avatar universal
Hi.,  I am sorry to hear of your Addisson's disease.  My husband spent three years chasing a wrong diagnosis of Cushings Disease, the exact opposite of Addisson's !!!.   Isn't Addisson's an autoimmune disease?  If so, then you are at risk for another autoimmune disease to develop.

Have you been checked for thyroid disease (especially the auto-immune Hashimotos's thyroiditis)?  

At least you have a brain MRI ordered and I would recommend getting a copy of the report from the center that runs the test, so you can read it before your next appt with the blank cd personality!!!

Elaine
Avatar universal
Hi db1, Ess and Elaine,

Thank you for the advice, and I think you're all absolutely right. I'm going to  stick with him for now and I'll reserve judgement until the next encounter... At least that way the tests will be done sooner rather than later.

That's such a good idea Elaine, to ask for a copy of the report, I would never have thought of that. I'm sorry to hear that your husband had such problems with diagnosis. Was he treated for Cushings for all that time? That must have been really difficult. I see from your other posts that he's having an MRI soon. I really hope that he gets some answers and some relief really soon. Not knowing is very tough.

Addison's is indeed an autoimmune disease.This is a very knowledgeable forum! I have been checked for thyroid. I have thyroid antibodies,and some swelling (most unattractive!) but the thyroid itself is still functioning ok for now.  

Anyhow, I have just realised that my date this Valentines Day is with an MRI machine. Not so romantic....
That said,I will be glad to have it done!
I hope you're all having a good day,

Snowflake.
220917 tn?1309788081
Hey, Snowflake~

I don't know...to be enveloped in a cozy little space and be hummed to for 45 minutes and have 100's of pictures taken of me is better than the offer I'll have for Valentine's Day with my husband out of town!  You go, Girl!

Good luck and let us know how it goes.  SOunds like you're on the right track.  Keep getting as many of these tests as you can.  It can only help to see what's going on.

As an aside, I've had some endocrinology testing done, and my doctor did find I was deficient in the human growth hormone.  So, he offered me injections, which I am trying.  But, I have had episodes of severe weakness to point of not being able to walk.  THis doesn't really make sense with the growth hormone deficiency.  I have also shown the Babinski's sign, which is more a neurologic than endocrinologic sign.  So, it seems to me, at least, that I need more of an answer than just the hormones.  You may, too.  

I have a new neurologist who has ordered tests no one has done yet, thank goodness!  So, we will see.  But, that being said, I have had MRIs that were normal.  So, on we go...For now, I am feeling pretty well.  

I am curious about your Addisson's, if you don't mind.  Do you get the skin symptom of a sort of "pseudo tan?"  I have read that can be a part of it.  It appears you live in beautiful Ireland.  I should think it would be a bit odd to be bronzed in Ireland!  Perhaps I don't know what I'm talking about...I hope I haven't spoken out of turn!

Take care and fight the good fight, Snowflake!

Zilla*

Avatar universal
Hi Zilla!

I can totally relate to the weakness and not being able to walk!! (I hate it and the lack of independence that comes with it!) I've no idea why it happens to me either, but sometimes I feel like I'm 150 years old. On the plus side I joke that every birthday I have to be getting younger, because I couldn't possibly be getting any older......

I do hope the growth hormone injections will help you. I've heard that not having enough GH can make you very tired and miserable. Cortisol with Addison's is similar in that respect. I didn't go brown, (unusual but it does happen) but I was exhausted, slept 17 hours a day and still didn't have the energy to sit up straight, vomited everyday for months ( my doctor at the time thought that was totally normal - he's the reason I'm somewhat suspicious of consultants now) and had killer headaches and blackouts. I think I didn't get the tan because my pituitary isn't 100% either and that controls the tanning aspect (also I am incredibly fair-skinned, even by Irish standards. I would have loved to have bronzed!!) My Addison's is unusual because neither pituitary nor adrenal gland are responsive - usually just one kicks out. So endocrinologically I have unanswered questions too!

I'm not sure as to what the Babinski sign is. Is that when your muscles cramp in unusual ways? I do hope some of your tests yield answers soon and that your new neurologist will figure it all out. Do you have a good endocrinologist as well? It's funny that we both have problems in those two areas. I wonder if the answer(s) links both in some way? If I find out anything at this end, I'll let you know!

Hope your vertigo clears soon!

Snowflake

PS - Unless that MRI machine hands me a red rose, I'm postponing Valentines until next week! I hope you have a good belated one too!
251222 tn?1270939717
Hello Snowflake and welcome! I would love to hear all about Ireland some time. My family is originally from there, according to my Grandmother.

Your story is a very interesting and eventful one. I hope this Neuro can find some of the still needed answers for you. What a jerk though & I agree with the thought of dumping him after the tests, if you can find someone else to see.

I've had my brain MRI reports come back saying something like -two 'ischemic infarcts' which I think is redundant terminology (thank you Quix) for stroke. The heading on it states 'Nonspecific white matter disease'.
I have Endocrine issues also - I became a type 1 diabetic in my 30's with no history of diabetes.
The Endo does not concur with the stroke label for my MRI. The Neuro says it's all caused by the diabetes & they are strokes. I dont' know who to believe.

Take care, and great to have you with us,

Jazzy fizzle



220917 tn?1309788081
Don't let Jazzy get off that easy!  Her story is so much more dramatic than that.  Perhaps one day she'll share the whole thing.

Later!

Zilla*
Avatar universal
Hi Jazzy!

I'll gladly tell you all about Ireland sometime! What part is your family from?

It sounds like you have an awful lot going on. Diabetes, I know is not fun, nor I imagine is getting conflicting information from your consultants. It's a pity you can't get your endo and neuro into a room together and refuse to let them out until they've discussed it to the  point of figuring it all out. You could referee!!

I do hope it all sorts out soon!

Best wishes,

Snowflake.
147426 tn?1317269232
I'd love to comment on your post.  Be back later. Quix
Avatar universal
WELCOME TO OUR CYBER FAMILY,THIS IS AN AWESOME SUPPORTIVE GROUP HERE.

SORRY TO HEAR YOUR NEURO IS A JERK.

MANY OF US HERE HAVE HAD OUR SHARE OF JERKY NEURO'S.HOPEFULLY ONCE HE GETS YOUR MEDICAL RECORDS AND TEST RESULTS HIS BED SIDE MANNERS WILL IMPROVE.

ITS GOOD YOU ASK THE QUESTIONS EVEN THOUGH THE NEURO DIDN'T RESPOND.

MAKING A TIMELINE AND KEEPING A JOURNAL WILL AIDE YOU AND YOUR NEURO.

THE SCRIPT TO GET THE MRI DONE MAY HAVE BEEN STATED STROKE TO GET IT DONE QUICKER AND FOR A DIAGNOSIS CODE FOR INSURANCE.

IF THAT NEURO SUSPECTED A STROKE I'M SURE HE WOULD IF HAD IT DONE QUICKER.

HANG IN HERE THIS IS A GREAT GROUP.

T
281565 tn?1295986283
Hi and welcome to this incredible forum. I can tell you from personal experience, this site is full of wise, caring and supportive people.

Ah the jerky neuro. If you've read some of the posts, you will know that you are not alone in that. T has given you some good advice and know that if you get frustrated, we are all here to help you through.

I apologize for the short response but I'm still not up to power yet and have been lurking in the shadows for the last week or so.

Hugs
Moki
147426 tn?1317269232
I really, really meant to give you a full, thoughtful foing over, but I got all caught up playing around and got too tired.  You, dear, are NOT forgotten.  But, I'm bumping you to the top so others can meet you and so I'll find you in the morning.

You're our first member from Ireland, well, we had a guy drop in for only one comment, but I'm not counting him.  My people are mostly Irish.

Talk to you in the morn!

Quix
147426 tn?1317269232
Hi, You do certainly have a lot going on.  I read through your postings and didn't see some thiings that would help.  I'm mostly interestest in the finding of multiple pulmonary emboli.  This is very unusual and make one think immediately about multiple small strokes as a possible cause of your neurologic problems.  Why are you having emboli? (emboli - for the others are things that get loose in the blood and clog up an artery some place like the brain or the lungs.  They can be clots, air, fat, pieces of bacterial mass like from an infection on the valves of the heart)  Have they worked you up for Hughes Syndrome?  This is "Sticky blood" and means the clotting system is unbalanced and makes clts too easily.  Have they checked you for AntiPhospholipid Syndrome and it's related ilk?

Tiny, emboli to the brain, as in Hughes Syndrome, can be a perfect mimic of MS.  Many people initially diagnosing with MS have later been found to have Hughes or a variant of it.

You're having an MRI this week.  That is very good.  I hope, hope, hope, that you are also having an MRI of the spine.  Although, Hughes Syndrome is one of the MS mimics that does cause spinal lesions.

Until they can determine if you are having frequent small strokes, it will be impossible to diagnose MS.  MS can only be diagnosed when "all other reasonable explanations have bee ruled out."

Your new neuro is certainly patronizing and arrogant - a common trait among neurologists.  But, we know there are good ones out there.  This one is looking for answers and that's a good start.  I do agree with getting copies, if you can, of all tests, letters, and reports.  They often tell a very different story than the words out of the neuros' mouths.

I apologize for not answering earlier.  I had missed the clue about the pulmonary emboli.  Have you had a cardiac echo looking for endocarditis?  And a "Bubble Doppler" looking for a hole in the heart allowing bubbles or clots to pass through to reach the brain?

I hope you're still with us.  Quix
164435 tn?1377105856
WELCOME,
GREAT GROUP OF PEOPLE.
EVERYONE IS IS VERY SPECIAL AND THEY NO THERE SH-T HERE.
GREAT TO HAVE U
KITT
231441 tn?1333896366
Welcome to our wonderful forum.

INteresting about the addison's. have you had full pituitary testing.

I have pituitary adenoma, which no one will admit could be causing problems though it's big enough to pretty much obliterate the pituatiary.  (My allergy dr finally brought up the 'could you be hypopit' at my last appointment and I hope to high heaven that she brings it up with my endo so it could be looked at further - is different if another dr. brings it up, as opposed to the patient).  I have thryoid failure (no antibodies, but that could be cause they already disappeared, though I do remember having no antibodies at an early testing), and my TSH is very slow to respond, even when other parameters are low (my endo doesn't look at TSH for me any more, only FT3 and FT4.  

If they suspect pituitary problems then they need to look at the actual thryoid hormones, not the TSH which may not work if the pituitary doesn't.

Sorry, enough about me.  The message was really that endocrine probelems sure can complicate lots of things and make answers harder.  At least you have a great endo and pulmonologist working with you.   That's a good start.

Look forward to getting to know you more.

Sally
Avatar universal
Dear all, thanks so much for your posts and all of the information - so incredibly helpful. I will post properly in response later. I've managed to get some sort of flu thing and totally underestimated how much extra steroid cover I would need. Consequently, the Addison's went nuts and my body went into total melt-down at the weekend and I am still too exhausted to even think straight today. I really want to get back to you all and I will post again later, just as soon as I can.

Snowflake
Avatar universal
Hi all.

All tanked up on hydro-cortisone and feeling stronger, so here goes with typing! That's some really good advice you guys offered so thank you! T, I  hadn't thought of doing a timeline or that there might be another reason for marking stroke on the form. Thank you for mentioning that! Sally, I'm so sorry to hear that you've had endocrine problems too, they really do complicate things. Every time I think I'm getting to understand endocrinology, something else pops out of balance and I realise that I  haven't got a notion what is going on. I  imagine an adenoma the size of yours would be tricky to deal with. I can't  believe your docs aren't following up to see what impact it's having. I hope your allergy doctor has a good strong word with your endo. If not, could you tell your endo that your allergy doc suggested  further testing? That might be nearly as good as the doc saying it him/herself, and might prompt your endo into action. That's a really interesting point about the thyroid and pituitary as well. I do hope you get some answers about hypo-pituitary issue.

Thank you so much Quix for your post as well. You drew some really logical parallels between what's been going on that none of my docs seem to have looked at yet. I have no idea what I got emboli. It wasn't really followed up properly because the diagnosing doctor was my original nasty respiratory consultant. He had been insisting for months that all I had was asthma (despite the chest pain and coughing blood) and when the results of a pulmonary angiogram showed the emboli, it seemed that his ego took a bit of a bashing at having been wrong when he was so certain of his diagnosis, that his attitude just got worse. He said there was no way of figuring out where they came from, and therefore no point in trying to find out. So he didn't bother running anymore tests. All my fight at that stage was used up on breathing so there wasn't much I could do other than fire him after I got out of hospital and got sorted out with my current lovely resp doc. It would make sense if something similar was found to be causing the neurological problems. My current doc thinks (from clinical history) that I may have had emboli before. Apparently they are unusual given the sheer quantity of them and also that they appeared in both lungs, although mostly on the left. He was brought on board too late to work out where the emboli came from, but he said one blood test done retro-actively (AAPT?? or something?? Not quite sure.) was off so might offer a clue as to why. There was no chance to follow that up, because then the Addison's drama took over in spectacular fashion and he called in my endo.

I don't know whether or not I've been tested for anti-phospholipid antibodies or Hughes, however I'm going to follow that up on Friday when I see my endo. He'll know if any of my other consultants have tested for them, and if not, I'll ask him to order those bloods. I did have a thrombophilia screening, to check for the possibility of genetic factors (proteins C and S I think??) being responsible, and that came back clear. Another reason I've been wondering about the connection since you mentioned it, is that since around the same time that I became aware of the nuerological symtoms I have also started getting what I called 'crashes'. I assumed they were related to cortisone levels (like I said, I'm not very good at distinguishing what symptom goes with what condition...) These 'crashes' are episodes of slurred speech, funny vision, muscular weakness, leg numbness and serious confusion and disorientation. I thought they were separate issues to the clumsiness, falling, dizziness etc that brought me to this forum initially. Since I read what you wrote, I've been thinking about it more, and am beginning to wonder if they are related. Thank you for your insight, it's really provided food for thought. I'm going for my mri this eve. As far as I'm aware it's brain only and not spine. I hope extra steroids won't have an impact on the reading.

Kitt and Moki, thank you for the welcome. you're so right. this site is full of the most amazing people. Moki, I hope you get back up to strength soon.

Sorry again for not responding sooner. I was absolutely sub-human for the last couple of days.

Happy Valentines Day to all!

Snowflake
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