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Avatar universal

more for Bobb..what else cause HCBS?

Well BObb,
seems your retiredment keeping you busy!
it has beeen good reading.

I wonder if you have any input newer info on literature.
WHat has been interest from my mriscans  was a hot cross bun sign(HCBS) in my pons(it developed more clearly over maybe corse of 4 years), cerebellar and global atrophy, multiple lesions(one in 'typical' ms area, and some have shown in gad contrast)These lesions are small, but one 1cm in cerebellum. Once my movement doctors pointed to little white spots(not undercontrast)and saidshe sometimes has seen in parkinsons.
andwhat looked like the lithter rim around my putamen
I had fit most criteria of 'probaal' msa-c, although they have not documented O.H. in clinic, but i have at home.
My ms neuro thinks i may haave two issues that would account for me. I did find an article of someone with both msa and ppms
And also an article about myelin in msa.< i am good at gooogling but not understanding much of what i find! LOL>

When i read abouut HCBS , and asked the forum neuro they just say not much litrature. I see a couple publications, but have to pay to acess(costly)
I saw article about a HCBS 'secondary to vasculitis' (my biopsy did not show cnsv,not diagnostic just reactive gliosis)
The one atricle title mentions this sign is not nessarly specific to msa (but that one i can not acess).
In your practice, did you see any paitents with MSA?
Did you see anyone with this HCBS?
If so, what caused it?
Have you ever known m.s. to cause a HCBS?

YOu been a good resorce here, it is kind of you.
And if you have any inpuuut i appeciate it.
(also i peged you for other than u.s. when i saw you refer to WC(water closet ) LOL LOL
resepctfully, amo
21 Responses
Avatar universal
Hi, and thanks for the complement , though I have not much to do with my time esp I'm not in need of money at this time to take a part time job, so I find this  very interesting.

  I see that you are kind of puzzeled over your diagnosis? MS- MSA- some thing else?
   In neurodegenrative diseases, we have 3 category of diagnosis
  1- Possible
  3-Definte which is by pathology (post M)
so, we as neurologist will be very glad if we get to the porabable level (the best we could get) depending on gathering all the clinical, labs, neuro imaging..enough of this Yap  yap ...you need an answer!

First what is  the pathology (damage) causing this sign?
Its a degeneration of pontine neurons at its base (the basal part of the pons) and transverse pontocerebellar fibers (the fibers originally coming from the frontal lobe to the pons to the Cerebellum as a feedback for movements so thats why we may find ataxia in a frontal lob lesion)
Understanding that , makes any other degenerative lesion in that area a potential to give that sign , though may have not reported yet  but we care about few of them, the one that  may confuse the diagnosis clinically
Idiopathic Orthostatic Hypotension and other Autonomic Failure Syndromes
Cortical Basal Ganglionic Degeneration
Hallervorden-Spatz Disease
Multiple Sclerosis
Parkinson Disease
Pelizaeus-Merzbacher Disease


Avatar universal
dear bobb,
thank yoou very much for your input.
I f i may ask another question when you have time.

about voiice and swallowing...
my modified barium swallow...
i have mild  compromised cervical .... andsignifacant compromised thoracic esophoagus primary peristalsis.
larynoscopy ... poooling in periform sinus, asymeteric vocal fold movement,

urinary and bowl...
urodynamics shows neurogenicc bladder ( am incontient and beginnning find mor e bowelll dysfunction)

have not seeen a gastro doc yet, but i sure i have slow/delayed stomach empty
i was very cold a while ago(shaking and shivers wearing many layers clothes under many blankets etc) temp  registered 94.5f
my skin will feel cold/cool andd muscles begin aching/pain deep... hands have blanching, delay color to come back when i make a clench fist(raynuuads syndrom?).
among other things....palpatations(holter caughts just a few vent. runs(6 beats) and some supra vent. runs)

1. do all this sound autonomic in orgin?
and ddo they dreive from brainstem?
(possible in corrolation to the HCBS?)

i once had cocain dropps to look for horners syndrome too.... my neuro opthamologist said the drops must have beenn 'bad'(they were ordered that day specific for my test at a large university hospital) because neither eye dialted...she never had seen that before. When she repeated the test a month later    they responded approriate  ...
2. do you think it was at al possible i did have a temporay problem ... or is a horners syndrome permanant?

3, can pons  nerves regenerate and maybe  i will not have the hcbs on a future mri?

sorry and one more..
4. as my brain biospy , findings of reactive gliosis, is this always damage? or degenerative disease?
or would  the 'normal' aging 44 year old brain have this? (biopsy taken  random from non-dominate frontal lobe .... later my ms neuro would point out atrophy in that area)

Thank you Bobb, and your input can help me organize my questions of my next doocs. visit.
I agree... i need an answer, it has been over 6 years   and havve continue to progress( multiple m.s treatment never proved no repreve or help)
be welll and a wonderful week

p.s. did you have  a 'special interst' in your practice?
i.e.. movement disorders... m.s... infections... etc ?
just curious

Avatar universal
Sorry I missed a couple of them
p.s. did you have a 'special interst' in your practice? No
i.e.. movement disorders... m.s... infections... etc ?NO ..a jack of all trades...I'm not sure if I typed it right?

    Bob Hilton
Avatar universal
AMO, Horner's syndrome does not have to be permanent.  I had it 17 years ago and two of the three symptoms lasted approximately two years--and then (for the most part) disappeared.  I didn't get all three symptoms at once either-not positive which came first-but I had ptosis on the left side, severe hypohidrosis (almost anhidrosis), and a smaller pupil on the left side (in close succession).  I could draw a line down the center of my face, neck and chest and the right side would be soaked with sweat (especially in the hot humid summers here) and the left side virtually dry.  I had no idea what it meant at the time--was feeling fine back then with no other symptoms--but in '91 went to some idiot neurologist who only did a CXR and never even made a follow-up appoint. for me.  He told me it was probably benign and I took his word for it.  Four years later (13 years ago) was the start of my actually feeling sick and I've spent the last 13 years being dismissed by doctors/especially neuros as  psychosomatic.  (When I requested my records from the neuro I saw for the Horner's in '90 I was told his office "couldn't find them"--thus no other neurologist would ever believe that I had it and this prolonged my not getting a dx.)  I just found out four months ago at Mayo I have autoimmune autonomic neuropathy.  I doubt I would have been taken seriously there, either, if I hadn't just been dxd with severe gastroparesis in July/August of last year--I'm the one who made the connection, not the docs, from my reading/research.  Also, I still have hypohidrosis on the left side per QSART test at Mayo, so apparently I still have residual from the Horner's after all this time.  Anyway, Horner's doesn't have to be permanent.  

It sounds as though you have not got a definite dx yet, but possibly it might be multisystem atrophy (CNS) from what I have read in your posts??  I have read about that and really do hope that is not the case.  I gather from your posts your MRIs have some abnormalities but the doctors aren't sure what they mean.

If you would care to share, I would like to know more about your symptoms/what is going on with you.  I've read a few of your posts before and wanted to ask you about your autonomic dysfunction, but hesitated to.  As you know, there aren't many people on this board who have this as a primary issue.  Thanks.
Avatar universal
hi annie,

thank you for answering. I do not feel my dysautonomia is primary, but that whatever i ahvee causes it.

I forgot about the three symptoms to define the syndrome.... i am not sure whhhat my neuro-opth thought when neither eye responded, just shook her head said she never saw that before and shrugged it off aas the droops beenn bad.
I do not seem to have hypohidrosis,  but i seem to over heat, get very flush and then  after a while persire heavily if i have been in the sun for over a very short time. My b.p. can plummet when that happens.
As for ptosis, my docs have nott discusssed that, but i do have too  raise my forehead musclesalot which can be fatiguing  cuz i seem droopy . Not sure if with horners the muscle strengh is there to do that?

I had a holterr one week and of corse not much seeemdhappening. At home i takee my b.p. it is typically on the low side and i cancatch it dropping over 30(57/36) points when i stand.Before tilt table, cardio did in offcie test and thoguht i had some mild dysautonima , later was  'inconclusive' .  a while back my h.r. would   be low(45 walking round the house).
I have a hard time warrming up, especiallu my hands and feet. MY temp does run low, so when i have a  uti it is diffucult to know if it is tempurature.
The urodynamics testing once again has my uro scrating his head.... i did have some weak bladder   activity then stops so i can have retention. But that wass awhile ago and noww tend to be moree incontient(wondering if my spyncter is getting to fail?). i do cath make sure i don't retain.

My motor sypmtoms are more serevre than autonomic.
and it is confusing at bestt to what is  the cause.
When a m.s specialist can not puut it all in the m.s. basket, and the movement specialist can not put it all in the msa basket. ONe day the answer will came, but i am stilll using the ceells i have left, so they have to wait to have my full brain! LOL
Let me know if you have some more questionss, and i am interested about your dx and the  autoimmune comes into play

i hope this was clear(my typing gets challenged:)
be well and hope youu feel 'bettter' today
Avatar universal

How long ago did your symptoms first start?  Also, what kind of abnormalities do you have on brain MRI?  I was just wondering why it is so hard from the doctors to tell if you have MSA or MS.  Does one normally have lesions in MSA on brain MRI and do yours not fit the typical pattern seen in either of MSA or MS?   I didn't realize you had such significant motor problems/weakness and thought you primarily had autonomic failure.  I know I read that with MSA the usual is to have urinary/urge incontinence and that with MS one can have either urge incontinence or retention, but that urge incontinence was more common.  But with primary autonomic failure I read that urinary retention was the usual.  I'm just trying to figure this all out for my own sake as well (not because I love to talk about these things!).  I have what they think is a primary autoimmune autonomic neuropathy-(limited AAN?) but they really aren't sure-and I don't believe mine is a primary autonomic neuropathy, either--I think it is secondary to another autoimmune disease.  I also have had (intermittent) motor and sensory problems, though mine is mild unlike yours and my MRIs are normal.  

I have mainly urge (occasional incontinence).  I've never had urinary retention.  
As far as my pulse, it is also very slow now (almost always in 50s,occasionally high 40s), but it does go up when I exercise.  My heart pounds (slowly) almost all the time on the left side--I can't stand it-it's very uncomfortable, but I have no idea why it happens or if related to the other stuff.  I have a lot of chest symptoms and have for 1  I have a really weak feeling in my chest and am aware of the physical effort to breathe (not chestr tightness, just tired/weak).  Sometimes it gets really bad and my respirations slow down and I feel as if my chest isn't going to go up or down.  I have had it last for weeks on end, and fluctuation in hormones also exacerbated it.  
Avatar universal
I just accidentally sent my post through without finishing it/messed it up.  Sorry.  I will write more tomorrow.  I guess it's time to get off the computer when I start hitting the wrong keys.  
Avatar universal

Anyway, I guess I am interested in why they think you might have MSA as opposed to MS.  Is it because of what they saw on your brain MRI or because of your extensive autonomic problems?  Does one normally have abnormalities on brain MRI with MSA?  Also, I read that most (?) people with MSA have Parkinson's/movement disorder associated with it.  Again, how long have your symptoms been going on?   I have no movement disorder-type symptoms and my brain MRIs are normal, but I still think I have a CNS problem as opposed to a peripheral neuropathy, but it doesn't look like I have MS since MRIs and LP I just had done are all normal.  

I am going to ask Dr. Bob-if he is still on this board-when I put my thoughts together better about the urge incontinence (seems to be seen more with CNS disease/MS, MSA?) vs. urinary retention (seems to be seen more with primary autonomic neuropathies/peripheral neuropathy?--that is what I gather from my reading, anyway) as well as ask him about the sweating pattern involved with my past Horner's, which I believe indicates a CNS/central problem as opposed to other sweating patterns seen in Horner's.  I do believe what I have is most likely autoimmune, but I think it's secondary to some other autoimm. disease.  I still would like to know more about MSA, though, if you can tell me what you know of that when you have the time.

It sounds to me like you do have orthostatic hypotension if your BP drops that low after standing up (in spite of a normal tilt table test?).  I don't have this (yet) and am thankful for that.  Doesn't one usually have a rapid pulse with it though instead of a slow pulse as you have (POTS-postural orthostatic tachyardia syndrome), or is the fast pulse only after standing?  I do have gastroparesis.  It causes me significant symptoms (pain, bloating, reflux), but only occasional nausea and I've never thrown up from it (though I recently had dry heaves--I don't throw up easily).  Sounds like you have symptoms of it too.  I've had symptoms for years but only found out 8-9 months ago that I had it.  So you haven't had the gastric emptying scan done yet?

I also have a slow pulse, low body temp (though every once in a while I get low-grade temps-don't know why).  I have heat intolerance-makes my symptoms worse, but every once in a while I get freezing cold.  My left hand is always considerably warmer than my right when it is cool in my house (in winter).  I just feel ill/faint a lot of the time and I don't know why (not dizzy from BP).  Don't know if it is some endocrine/gland thing going on or what.  My chest symptoms are really the worst (faint, heart pounding but slow), chest feels weak and too tired to breathe sometimes/a real physical/mechanical effort-slow respirations).  This started in '94 after a viral infection and has never completely gone away.  It was made a lot worse by hormonal changes (ovulation)-got really sick/faint for 4-5 days every month.  I have no idea how it fits in, but I think hormones and possibly the rise in body temp exacerbate all my symptoms.

Do you have numbness/tingling/other paresthesias along with your weakness?  

Sorry this is so disjointed.  I've had a couple bad days and am not sure what I even want to say.
Avatar universal
hi annie,

it is harrd to say now looking back when, maybe fall ''99 (maybe longer)

quiet a few people are misdignosied with ms first.
ms doc recognised small lesions, but not in 'typical' placees, two  l.p. normal. and symptoms they usually do not see in ms.
i had the biopsy he had done lot of blood work and he was concerend about vasculitiss.
didnot respond to ms treatmennnts, and a few more lesionss and he  begun to see atrophy(they call it 'global' atrophy , i think the most is cerebellar and frontal lobe).
I saw movementtt specialist, all the blood  tests for genetics forms ataxias. year and half later when i have a udated mri was when they saw the hcbs in my brainstem and abnoralties in my putamen/basal ganglia. That cause symptoms very rare for ms.
There is an article i found aboutt demeylin in msa,i will try to rememebr to take it next time.
last visit my movement neuro said i was not proogressing fast enough for msa(thankful!), but i have heaard of people surviving 15+ years.so i have symptoms and signs of both diseases.
I know what you mena when you feeel in your gut it may be wrong dx , and there is alot to be said for that, youu are the one in your skin living itt. I know you must feel ppoorly with all you fluctuuations, can make it hard to thhink.
i don't know if i answered your questions right, i don't read well.
if you want,i wil try to answer your next note tomorroow.
take care annie,

Avatar universal

I'm sorry I didn't reply sooner.  I hope you haven't flitted away.  Thanks for sharing further about what is going on with you.  I think I understand better now why the neurologists aren't sure if you have MS or MSA.  I certainly hope you don't have MSA and the fact that you aren't progressing as quickly as is normally seen in that disease is a good sign.  If not MSA, do they think it is the primary progressive type of MS?  I guess lesions aren't as easy to figure out (the cause) on brain MRI as I thought they were for the doctors, and sometimes not in the typical areas.  That is something I am learning through this whole process, though,--that not everything is black and white, clear-cut, and that there are lots of variations from the norm in diseases (just as in life).

So you have had symptoms for about 9 years?  Do you have significant muscle weakness (legs, arms) or sensory neuropathy?  It sounds like you have a fair amount of autonomic neuropathy as well.  What about Parkinson-type symptoms?  Isn't that something sometimes seen with MSA?  I remember reading that.  You take care, too.  I'd like to hear from you if you are still reading this thread of posts.
Avatar universal
hi annie,

i am not sure, if youuu can tell me, they said yoou have AAN, but you are not sure therre right?
And some motor sx's? Can theeeey account for theem withautonomic issues?

i don't think it has been 9 years yett, maybe 7 1/2?
I knoww people witwh msa that have the stiffness of parkinsons, i am happy i do not have much, i actually am more with lack of tone(floppy) , yes all limbs, trucnk and neck.
The resting tremor is not very common in msa(i have  intention tremor ) buuut  i am real slow. SInemet has somewhat help the f.o.g.(freezing of gaitt) .
I can not walk more than 15 ft, and that is aided(walker or someone holdinng me.
Other symptoms thhat i have is  choreiform movements. I was having myoclonus but that seeeems to have stopped lately.
Yes, i have buzzing/vibration  (paraesthesia)It seeems to come somewhat in stronger sometimes, then i see a  decline after it has been stongest.
MY m.s. neuro actucallly thinks i have two processes, wwether ms and msa or some other similaar disease.
I seeeem to fit criteria for both.
I haven't had meds for my o.h. and low bp, keeping well hydratedd iss so important... but then incontinece is even worses, but helps keeping  down so  many uti.

I hope you are feelin well this weeeknd. answers, especiallyy if there    ispossibility of some treatment would be wonderfull, right?
I try to reada  every few days if i can, annd keeping this thread is good with mee too.
take good caree. amo

Avatar universal

Actually, they didn't tell me I had AAN at Mayo (that was my mistaken extrapolation from what I was told).  I was actually told that they thought I had *an* autoimmune autonomic neuropathy, but it has taken me a while to figure out that that can be secondary to another autoimmune disease, and not a primary.  I got my records from Mayo last week (from my 2nd visit in March) and just re-read what she wrote, and basicially they don't know what is causing my autonomic dysfunction, but believe it is probably autoimmune.  I sometimes have tunnel vision and things need to be spelled out for me.  Anyway, I think it is secondary to another autoimmune disease, but which one I don't know.  

AMO, I have symptoms that I believe are CNS-related and not explained by autonomic neuropathy or a peripheral neuropathy, but I don't know for sure.  I asked Dr. Bob that-if one could have mild sensory and motor symptoms with autoimmune autonomic neuropathy-and he said yes, but what  I should have asked him is if that was possible with *primary* or only secondary autoimmune autonomic neuropathy.  I already know it is possible with secondary, because that could include diseases like MS, an autoimmune disease.  The right side of my mouth also droops sometimes.  I was told it could be from nerve damage I had on the right side of my face from a car accident back in '90, but it only started in '98 and became accompanied by slurred speech in '99, so I know it's not from that.  It also got worse when I ovulated.  I also don't think it explains the blurred vision I had in my right eye and the fact that heat exacerbates my symptoms (I have decreased sensation in my perineal area (for about 4 of 5 years) and also have had occasional urge incontinence (for about 4 years), worse during/after warm shower.  I have never had urinary retention.  But my MRIs and LP are normal.  Also, my understanding from my research is that I had a first-order Horner's syndrome (meaning CNS) because of the sweating pattern I had (anhidrosis on left side extending below the collar bone).  If I ever get in to see a neurologist I will try to get some of these questions answered.  The practice I was given the name of by another doctor has refused to see me after reviewing my records.  They won't give me a reason.  I know there are other neuro practices in this town but I don't know how good they are.  

Sorry, you did mention your symptoms started in about '99, so I guess that would be more like 7 1/2 years.  AMO, I had no idea that you had such significant muscle weakness and that you needed help to walk.  Do you have any cognitive difficulties (if you do, I can't tell), but you did mention you had trouble reading, and I wasn't sure why.  I truly am sorry for what you have to contend with.  I hope you have a good support system.  Do you see two different kinds of neurologists-one for MS and another who specializes in movement disorders?  I hope they treat you well.  You don't need to hurry in posting back-take your time.  I usually read the boards every day or every other day, so I will check back.  By the way, are you male or female?  I saw above that you are 44.  That's how old I am (hence, the "Annie62").

Avatar universal

someday whenn the medical field will have better tests to make  firm dx as  ssoon as a patient presents to them.....someday!
The unknown annd uncertainty is aa tough road to be on. Even if there iisn't tretamennt/cure, at least a name to know what it is.
right now when so many of these diseases can seem like one another. They used to use the hot bath test for m.s.... put someone in a hot bathhh and see if thier sx increase.... well heat intolerance is seen in mors diseasesthan just m.s. but that was one way they used to use in dx it ... makes on wonder how many people were dx'd in past with wrong dx?

Have you gottten treatment for your incontience?
has anything helped you?
you siad..."If I ever get in to see a neurologist I will try to get some of these questions answered. The practice I was given the name of by another doctor has refused to see me after reviewing my records. They won't give me a reason. I know there are other neuro practices in this town but I don't know how good they are. "......

if i am confused i am sorry.... but if you have'nt whatever doctors you are seeing need to get you in to see one!
How far would be be to go to a larger practice?
Yes,i see different subspecailist, and they really want to have answers for me. They work reallly well with my local doctors.
If that one doc would not even give you a reason to not see you, then be certain you would not want to be seen by them anyways.

about reading.... mostly from eyemovemnts issues, so much reading is dificult. memory and wordfinding are my most cognitive trouble, oh and organizing.

Bobb has been wonderful in answering messages, he madee a couple things  more clearr. Even with lenghty doc visits, not everything gettts adressed let alone understood.
I know the doctors we see are well educated, but Annie, you are the one in your body and mind, your researching and your gut instint can go a long ways! so keep fighting for your answer, and keep faith it will come.
i hope you see this note, i will check back later today or tomorrow,,,, if not i will post under 4/16
be well, take care amo
Avatar universal

Good to hear from you again.  I hope you are doing well.  I saw your message earlier but couldn't respond to it until I finished work today.  I'm going to warn you, this is a long post.  You don't need to respond to it all.  In fact, you don't even have to read it all!  Writing is like therapy for me because I have been so angry lately, and this week has contributed to that feeling of helplessness even more.  

No, I haven't gotten in to see a neurologist locally yet.  I returned from Mayo last month (I was up there in Dec. and March).  Before that I had not seen a local neuro since Aug. 2004 and pretty much decided I wasn't going to go to one again until either something came to light in my tests or else something happened to me, whichever came first--because I knew it would be deja vu all over again.  Luckily-or unluckily-I was dxd with severe gastroparesis in Aug '06.  And of course I do not want to go back to any of the neuros or their practices that saw me in the past since they thought my complaints were  psychosomatic.  I saw another neuro practice back in '90 for the isolated Horner's.  Anyway, that (idiot) doctor I think is retired and is now a consultant who testifies in malpractice suits (how ironic considering he failed to work me up for the Horner's other than a CXR).  And the one practice/4 doctors in town with a good reputation has refused to see me and will not give me a reason.  (I got the name of one of the doctors in it from my pulmonologist whom I see for asthma and called to make an appnt.).  The girl on the phone asked me if I had seen other neuros in town and other such info, and I told her that I had been sick for years and that I was just dxd at Mayo with autoim. auton. neuropathy and obviously wasn't going to go back to any of the local neuros I saw in the past since they all thought it was psychosomatic.  I'm thinking that I probably should have kept my mouth shut, but I am still VERY angry about all that has taken place).  She left the phone and came back and said the doctors would have to review my records before agreeing to even see me.  Well, they reviewed my records and she called to tell me that they would not see me and didn't have to give me a reason.  She kept telling me the doctors said to follow up at Mayo--like I'm going to drive 500 miles to see a neuro for 20 minutes!  I told her that wasn't plausible and that I did not have a neuro at Mayo any longer, that i only went there for a consult. They know this of course, but want to make it look like they aren't leaving me w/o a neurologist.  I wouldn't care some much if there were other good doctors to choose from, but there are only about 4 other "straggler" doctors and I don't know anything about them.  One is a botox/migraine doctor and one is an older guy who looks like he is ready to retire.  There is a smaller town south of here (same county) with a few neuros, but I saw pictures of a couple of them in a physicians' book, and they looked a little goofy to me :) (I'm trying to keep my sense of humor about all this-- otherwise I would absolutely lose it).  I know I don't know anything about these doctors, and I am going to try to find out more, but I really don't think any of them are going to be good choices.  The practice I wanted to see specializes more in immune-mediated diseases (MS primarily, but other things as well).  

Also, Wednesday my PCP "terminated" me, which was very upsetting--especially the way he did it.  I have no respect for him and absolutely believe there was no justification for it.  He was very abrupt and irritated in his manner from the minue he walked in the room, and started asking me questions about Mayo like I was on trial.  I really believe he had planned to get rid of me before our appnt, because I said nothing in our appnt. to warrant it.  He DID tell me "why"--that he could not continue a relationship with a patient who didn't trust him, that that was an "insult" to him.  It was the most bogus excuse for dumping me that I've ever heard in my life (although I've never had a doctor do this to me before so I wouldn't know how it's normally done or on what grounds).  I didn't even know they could do this (unless there was a legitimate reason, I mean).  I told him that I wasn't the one who did anything wrong, that the wrong was done to me by the doctors.  Every time I tried to say something he would put his hands up and try to cut me off.  In other words, he was allowed to say what he wanted to say but he wouldn't allow me to have a voice.  The last time I saw him was in August and at that time I told him about the severe gastroparesis dx that i had just gotten from the gastroent. and hoped that he would "connect the dots" and come to the realization that I did indeed have some kind of neurologic problem as I had been claiming for years, but when I asked him in frustration if he believed I was really sick he responded, "Well, I believe that your *symptoms* are real."  What else could that mean/imply other than you complaints are "psychosomatic?!"  If he believed I was actually sick he would have said, "Yes, I believe you are sick and we just haven't found out what it is yet but we're going to keep trying" or something to that effect.  When I brought this up on Wednesday I told him that I didn't have to be a rocket scientist to figure out what that statement meant, and it was an insult to ME (my intelligence) to suggest that it meant anything other than the way I took it.  He tried to cut me off when I said it, but he knows damn well what he meant when he said it even if he doesn't remember saying it.  God, I need to stop or I am going to have a stroke...

As far as any treatment, I have only been treated for my gastroparesis.  I'm on domperidone and was on Zelnorm, but just my luck they took it off the market 3 weeks ago.  So, far I haven't noticed any real difference surprisingly.  My stomach/chest hurt me every day, anyway, so that's nothing new, but at least I didn't get more pain/bloating when I went off it.  As far as my incontinence problems, it's mostly urge, rare incontinence (other than in the shower, which for a while there was often).  The MS specialist at Mayo mentioned meds for this but I honestly don't think it warrants that yet, anyway.  As long as I don't drink much I am ok and I am home most of the time anyway (only work part-time from home).  My worst symptoms are all my chest symptoms---weakness/pressure in my chest, slow pounding of my heart and feeling faint/ill (not dizzy/low BP).  I have this all the time, but it fluctuates in severity.  When I ovulated every month I thought I wouldn't survive it--i was so ill.  And I have no idea what can be done about that or what it even is.  It's constant and I have had it for 13 years-came on after a viral infection.  

Are the neurologists you see out of town?  Do you have to drive far?  I know what you have is very overlapping/outside the box and not just any neurologist is going to have an understanding of it.  Have they leaned more one way than another with regards to your having MS or MSA, or do they think you could possibly have both?  I know you had some abnormalities on brain MRI including the HCBS, but were your c-spine MRI and LP normal?  What drugs are you on, if anything?  Are you on one of the disease-modifying injecctiables for MS?  My cousin has MS and quit taking hers.  Not sure which one she was on.  She is a nurse (but not a very good patient, I guess :).  She has very few symptoms though.  

I am sorry to hear that you have cognitive difficulties as well.  From all the reading I have done on this board, you probably have more to contend with than anyone.  I noticed your posts in the past and thought the very same thing, but wasn't sure if you wanted to share anything about your illness.  The only thing I had gathered from them was that you had autonomic dysfunction, but I never knew what your dx was.  

And, yes, Dr. Bob is definitely a good man and magnanimous to have shared so much time posting on here.  It looks like he will be going back to work at least part-time and will only be posting here when time permits/weekends.  Hopefully he doesn't abandon the forum altogether.  

You seem to have a lot of faith that things will get better and that you will get a definitive diagnosis.  I hope you are right, and I especially hope that your symptoms do not progress and that whatever treatment you are getting is working for you, or new treatments come into existence that will stem the course of whatever you have.  

Thanks for listening.  I can tell you are a thoughtful person.  I can tell by the things you say to people on this board.  I hope your day was a good one or as good as it can possibly be for you.  I'll talk to you later, AMO.


Avatar universal
it is good you can write, and it is a good form of self therapy! keep doin it.
the neurology dept is about 3 hours drivee, i go about fours months, but sometimes i take more time in between.
Typicaal appts last hour or more.'
we have one local neuro , but i never met her, i do nto hear much good about her, so doubt she would know what to do LOL

THrough the years  three neuros thought i probablyhad psyhcogenic problems.
WHY  then did they not refer me to a psychiatrist for evalluation , andd treatment!!???SO,  i finally decided to take it upon myself to see a psyciatirst.
shedid some residency in  neurology before decided in psychiatry, she worked beside my neuros so     knew them tooo.
AFter looking through   all my files and tests She dismissed me after two appts.
She also said people with somatoform(sp) don't seeked outt a psychitrist them self.
I am really glad i did that so it had finallybeen adresssed correctly ending the selfdoubts the ones made me feel.
My heart hurts for the ppeople out there who have beeen told and been treated for mental illness if their illness is not that.
AND vise versa... the people who have mental illness and not getting the proper help they need either!
There is still such a stigma related, andd it is not fair.

I mention this becausee maybe if you were to go to a psychiatrsit( a GOOD one),maybe with the evaluation, the neuro deptment would read your filee again, andd seee you??
I competely understand when you mentioned keeping your mouth shut! it is sad when we petients feeel we should have to do that, in fear we say or do somwthing that would jepordise ourself risking having a correct dx.
It is  so hard being your own advocate when you feeling poorly...but keep fighting annie!

ALL the doctors and radiologist would look at my mri and make their personal asssesments.
My movemnt doctors showed us all the abnormalties and said  things are easily missed even if they know what they are looking for.

i also wonder about many of us with actual funtioning of  the brain, and wonder why the other types of scans are not more readily available and used????
How many people   would be betteer asssessed with them and NOT just mri???
When things do not show up as , lesions, atrophy, or what hhave you.... makes me wonderr.

Ya know... maaany of the good neuros are a 'little goofy looking' LOLL OL
don't let that stop you form seeeing htme.
I can't teell you how sorry i am annie, that your doctor treated you in such a manor, not as a patient, not a s a person!!!!!!!
I hope you can you find a new pcp, one you can have a better reallltion with.
I want you to be able to find out what you have.

Yes, they believe   i have two problemss.
I have two negative l.p.,
I tried threee different m.s. treatments, and multiple rounds of i.v. steroids...none has helpped.
The sinemet helps with that slowness somewhat.
i decided i will have a brain atopys(at a specific lab)so my family will know for sure.

what a person is going through is realitive to themselves.
Someone can have 'more' than another, but what is happening to someone with 'less' doesn't make it any less to the person with 'less' ( hope that sounds like it is in my head! LOL)
It's what a person does with it all that really matters.

Did your cardiologist run a holter for you?
because if not, things can certainly be missed!
(even with onne and events are intermittant)
And, has your gyno done a THROUGHough evaluation?

keep posting annie... and keep faith!

Avatar universal

You must live in a small town if you only have one neurologist!  I'm sure that with your diagnosis/problems you would need to see someone who is an expert in MS, MSA and movement disorders to keep track of what is going on with you.  The woman neurologist in your hometown that is not so good is what I am afraid I will end up with.  I would rather not go to one at all if that is the case.  It sounds like you travel to a university hospital to see your neurologists.  

There are probably about 20 neuros in my town, but I have seen all the major practices except the one that I would like to see (which won't see me).  The other four doctors that I can find in the phone book appear to be in solo practice, and I will try to find out more about them when I see my gastroenterologist next month (as well as get the names of a few PCPs/am going to ask for the name of a good female one).  I'll ask him if any of those four are any good or if he knows any good ones in the town north and south of here (only 15-20-mile drive).  Also, I am going to ask if he will talk to one of the doctors at the practice I would like to see in order to see if he can get me in.  He is a nice guy-have only seen him for eight months since he dxd me with the gastroparesis-and hopefully he will feel comfortable doing this for me, but who knows--he might tell me he has to "terminate the relationship," too, when I see him!  Nothing would surprise me after last week.

AMO, I do have "mental" problems (ha ha)--dxd with OCD (can you tell? :) and social anxiety disorder (as well as major depression and an eating disorder in the past).  (I'm a lot more asssertive online and able to be myself and say the things I really think than in my life offline, and I have also gotten more assertive in general over the years just because my anger is becoming commensurate with my anxiety-or even surpassing it).  So that is why I have been treated the way I have been treatedby the doctors for 13 long years.  I have had OCD my entire life and never did I have any medical problems until I got really sick at the age of 31 after a viral infection.  When I had the Horner's at the age of 27 I didn't even know what it meant and so I wasn't particularly worried about it even though it was really bizarre.  I had it for a year and a half before I even saw a doctor about it--so I was hardly someone who went to doctors often or had a history of psychosomatic complaints.  As I told the neurologist at Mayo, I don't LIKE doctors enough to go visiting them all the time--especially after the way I've been treated.  She just smiled.  I would have to have a hole in my head plus be a masochist to keep going back just in order to be dismissed over and over again.  The problem with the doctors is that once one labels you as psychosomatic/somatoform complaints, then if the next one buys into it (you know, they see you, they don't know you from Adam, and they make their ignorant assumptions that have no basis in reality), it pretty much continues all the way down the line.  Doctors (like a lot of people) are a bunch of automatons.  If the first five think it's in your head, and the tests aren't showing anything, what do you think the 6th one is going to think?!  By that point you are BRANDED FOR LIFE.  When I saw my PCP last week he said to me "Why do you think I offered to send you to Mayo?" (in other words, implying that he DID take my complaints seriously (which I know he did not)).  I felt like saying, "To cover your a## just in case there really WAS something wrong with me," but he probably would have thrown something at me (he was already angry and irritated when he walked in).  I had already told him in the past that I was not willing to drive up to Mayo (500 miles, drag someone up there with me, take off from work, etc.) unless he could assure me I would be taken seriously up there, and that I did not want a repeat of what happened when I had a consult at a university hospital or a repeat of all the neuro visits up to that point.  And he said nothing in response and just sat there, and that is because he had no intention of talking to or sending a note up to the neuro telling them that he believed my symptoms were organically based and not psychosomatic and that they just hadn't found the cause yet.  

Your deciding to see a psychiatrist was a smart move on your part.  Having a psychiatrist give her opinion that your symptoms were not psychogenic in nature I'm sure gave credence to *your* claims that they were not.  Doctors listen to other doctors before they will listen to a patient (only a rare one would consider that maybe the patient has been right in their assessment and the doctors wrong).  

AMO, I don't think the reason the neuro practice refused to see me had anything at all to do with not taking my symptoms seriously (I have already been dxd with autonomic dysfunction/probable autoimmune autonomic neuropathy.  I am becoming more and more convinced (especially after what happened Wednesday with my PCP--which was totally unexpected--that they think I am going to initiate a lawsuit.  I have a hard time keeping my mouth shut when I am angry (what can I say), and when I called the neuro practice the secretary asked why I was making the appnt, and I told her I was just dxd with autoimmune autonomic neuropathy at Mayo.  She then asked if I had been seen by other neurologists locally and how many times I had seen them, and I told her the ones I had seen, (opened my angry mouth) and said that obviously I wasn't going back to any of them because they thought it was all psychosomatic.  I told her that I also saw a neuro back in '91 for the Horner's and said I couldn't get my records from him because his office lied and told me they couldn't find them (ok, I know I shouldn't have said that, but I never say anything that isn't true-his office DID lie and then called a few years down the road (out of the blue) to tell me they purged my records (so, basically they "couldn't find them" for years and then suddenly found them and conveniently purged them).  Anyway, the secretary said they would have to review my records before they would agree to see me.  So, I think it was when they called me back and told me that two of the 4 neuros wouldn't see me (she wouldn't tell me about the other two--the following week she called to tell me the other two wouldn't, either).  I told her that I thought I knew why they were doing this to me and that it was quite frankly ridiculous.  What I meant was that I thought that they didn't want to get involved with/take on a patient who has been written off as psychosomatic/dismissed by their colleagues in this town for 16 years.  Maybe she took that as I was initiating/involved in a lawsuit.  After my abrupt dismissal by my PCP I am more convinced that is what they think than ever.  I have no intention of suing anyone.  I don't want their damn money.  What I wanted (and deserved) in the past was to be believed, which I wasn't, and now what I want is a good neurologist who knows something about autoimmune neurologic disease who will follow me in the years ahead.  If it turns out I have some kind of connective tissue disease causing my autonomic problems then I will see a rheumatologist as well, or switch my care to one, but right now I need to find a neurologist as well as a PCP.

That is interesting that your doctors/radiologists see different things on your MRIs.  I imagine if you have something very rare/not normally seen, then it would take an expert in that field to know what to look for and know what it means, and that general neurologist or radiologist could very well miss it.  

Were you referring to using PET scans in addition to MRI or other types of scans for imaging the brain?  I imagine it is an issue of money/insurance a lot of the time-even more expensive than MRI and probably insurance wouldn't cover it, but if nothing is showing up on MRI and it is suspected by a doctor  there is brain involvement, then I would think they would do other kinds of tests.  

So--my understanding is they think you have MS and MSA-or some kind of overlapping crossover of the two that does not fit easily into a box.  AMO, you mentioned having a brain autopsy.  That was very upsetting to read that but I am glad you felt you could share that with me.  What have your doctors told you your prognosis is?  I have read some on MSA in my research on autonomic dysfunction as well as primary progressive MS.  I know neither has a good prognosis, but I know the prognosis for MSA is worse.  Is there any way they could do a biopsy of your brain-is that even a possibility?  You mentioned your family.  I hope they are good to you and take good care of you.  You have never said much about yourself, but that is OK.  If you ever want to share anything about yourself with me, that is OK too, and I would be glad to hear.  If you are tired of writing/posting back (or it is difficult for you) and do not want to continue, let me know and I will completely understand.  If it is not too difficult for you and you want to continue, then let me know that.  

I hope you also keep the faith/your faith and that you defy all the odds and grow to be old.  I know what a strain it is to watch those you love deteriorate come closer to their own mortality.  I have an older sister with breast cancer who is going to die because she has refused all treatment.  She was dxd over a year and a half ago with early-stage cancer-she did have a good prognosis.  I also have an older brother who was involved in a really bad car accident 10 years ago.  He developed ARDS three days after his accident and spent six weeks hooked up to life support in a neurotrauma unit (no head injuries, but massive trauma to his chest and abdomen).  Two days after his accident he expressed his concerns to the nurses as well as us that something was happening to his lungs and asked us (he could barely talk) why the surgeon didn't have him on antibiotics.  I remember feeling extremely nervous at the time, because I knew my brother was definitely worried about his lungs and he had to have good reason.  Early the next morning when were waiting in the hall for the doors to open the surgeon's PA came out to tell us that he had developed "full-blown ARDS" and they only gave him a 5% chance of surviving it.  When we went in he was on a ventilator and had every kind of tube in his body you could imagine.  Over the next 6 weeks he developed three blood clots and suffered a minor stroke.  He developed what the surgeon thought was bowel blockage.  The nurses did not want him moved because he was so tenuous/fragile and said even if he had a bowel blockage they couldn't operate on him because of how critical he was.  The surgeon insisted that he be taken to another floor to be imaged and after my brother got back he went into cardiac arrest.  Every organ in his body started to fail.  

My brother was strong and he actually survived it in the end--but just barely.  He has major lung damage/scarring and it is slowly taking a toll on his heart.  By the way, I've never mentioned this on this forum before, but my brother is a doctor.  So, I guess sometimes doctors don't even listen to other doctors.  My brother knew what was happening to his body and his fears were well-founded.  The dismissive and arrogant trauma surgeon that he had I've no doubt is living the "good" materialistic life while my brother (whose concerns he did not take any heed of) and who has more respect for human life than anyone I know and who graduated from one of the best medical schools in America in the top of his class (Washington University in St. Louis), yet chose to become a family practitioner and spend his entire medical career working in poor rural America--struggles to breath and hang onto this earth.  I always wondered if he gave my brother a second thought after he left the hospital two months later as damaged goods and headed to rehab.  Sometimes I wonder if they have any clue (or even care) just what effect their arrogance-and unwillingness to listen-has on the lives of their patients.  So, I guess my anger is not only on my behalf but my brother's as well.

Avatar universal
hi annie,

i hope your gastro doc can help lead yoou to the right neuro for you, it sounds lilke he may just be the one to get you where you neeed to be.

can you tell me all your autonomic sx's?
and you mentioned some motor one?
and what tests they give you for any of them?

i remeber your low heart rate... did you get a holtere test? do you get dizzy or other sx's with it?
i know i did not have the sx's that i experience during mine.and my tilt table of corse my b.p. didn't drop, so some docs won't believe i have oH (orthostatic hypotension) ... that's ok , because i know anyways.
i know how frustured it is when the sx's don't happen during the actual test, so then it all doesn't get documented on results!
I hope you get a docotr that will listen and trust what you say....SOON!

I'm at a point righr tnow that i have had so many tests and tired to see more doctors knowing they will want more, and then i decided i want to just get on with living how i have adapted.
I did have a biopsy, the results were not diagnostic, just showing cells that happen with brain disease.
I had it pretty earllly on, and that was something i was able to hold on to while somedoctors where going in circles if i had conversion.
The day two movemnt specialists went overr my scansss with my husband and i, anda they first discussed msa-c. I had read about it,so i knew what was coming, my poor husband didn't . They were very dirrect when thye discuss the 10 year survival, but they were gentle at the same time.
One reason they are uncertain now is after these years  i seem to not progress 'fast enough' for msa.... while i apreciate their expertice ( they have a handful patient with it)i think they just don't know. I have learned somepaitient have survived up ward 18 years.
i know of people never being completley bed ridden, eatting on their own, and even still able to walkk up til they die.
I still sometimes wonder about a mitochondrial problem.
don't worry about my mention of an autopsy...i still have alot of cells i am usuing! LOL

I read some post also a couple people in your family have addison's?
i will presume they did the blood workup on you for that too?

i hope youu have been ablae to keep your ocd at bay, i have family with diffents 'issues' and know it's not easy.
andd yea, i had one doc visit.. his resident examed me(he did not even have the time for me to do it himself!) then res. presented my case to him... i saw him 10 minutes and he caame to his impression....i was dumb founded!
He was the top dog, head of this, pres of that, yada yada yada!
So annie, you never know where it will be(a small practice?) that will be yourr help?

I know it is hard without answers.
when you feelllll bad, and justw ant help!
let me know how you are feeling.
and keep me posted about doctors appts.
i go for a followup tomorrow, so i willl let you know about it.
be well anniie and hope today is a goood day.

p.s. is it ok with you to keep posting here on this thread? let me know what you thinK?
Avatar universal

I'm gonna copy and paste and respond to each thing because I'm tired today and won't be able to remember it all.

{i hope your gastro doc can help lead yoou to the right neuro for you, it sounds lilke he may just be the one to get you where you neeed to be.}

I hope so, too, though there aren't many to choose from.  I am still hoping he will call over to the practice I would like to see and hoping they will agree to see me at his urging.  If they would just agree to see me once I believe that they would continue.  

{can you tell me all your autonomic sx's?}

There are only a few I know for sure/pretty sure.  I was dxd with severe gastroparesis on gastric emptying scan last August (the turning point for me--the reason I was finally taken seriously)-didn't you mention you thought you might have this, too?--and I have abdominal pain/bloating, chronic reflux/burning in chest, occasional nausea from that.  My pulse averages about 56 resting (used to be over 100 resting all the time).  I was dxd with hypohidrosis of left leg on QSART (probably residual from long ago Horner's syndrome).  I have "prominent hippus" of pupils, whatever that means (something to do with when they shine the light in my eyes, my pupils change rapidly or something).  I also have decreased sensation in my perineal area (that started about 4-5 years ago).  At the time I thought it was a "side effect" of the severe sleep apnea I had developed due to a tremendous weight gain on my part, but I have since lost most of the weight and I pretty much figured a couple years ago that it was due to neuropathy.  I have decreased sensation in that whole area, which worsens after coming out of the shower.  I also have mild urge incontinence (mostly urge, occasional incontinence).  That's really all I know of.  I do have slowed breathing (respirations always 5-7) and have had significant trouble breathing (slow, shallow) many, many times in the past accompanied by significant faintness, but my SNIF test was normal at Mayo, so I don't know if this is autonomic or not.  I feel faint/ill to some extent most of the time (anywhere from mild to feeling almost like I am going to go unconsious) but I do not have any dizziness or BP issues.  My BP is a little low/good (90s/50s) since losing most of the weight, but it used to be even lower than that when I was real thin and my tilt table test was normal and I do not have orthostatic intolerance, so no actual dizziness.  

{and you mentioned some motor one? and what tests they give you for any of them?}

My motor problems are minor/intermittent-but they are real, and that is (one of the reasons) why I do not believe I have a primary autoimmune autnom. neuropathy or else I have two separate issues going on.  I have mild drooping of the right side of my mouth which came on in '98 along with blurred vision of my right eye.  After a bad bact. infection in '99 I got mild weakness in left leg and arm and trouble swallowing as well as a rapid vibration (not my pulse) in my left ear only when I yawned (since gone).  Once, during ovulation (I don't think I have any GYN problems-exacerbations during ovulation are common with many autoimmune diseases) my speech became slurred, the right side of my mouth pulled down (I was with my aunt in the mall and she saw all this-she thought I had a stroke) and my left leg became weaker and I couldn't lift it up to walk/dragged it.  I only notice a mild difference in the strength between left and right side of my body now.  I do get intermittent tingling and a heavy feeling in my left hand/foot and arm/leg.  However, my EMG in 2004 and c-spine MRI in 2004 and brain MRI and LP (just did those at Mayo) are all normal.

{i remeber your low heart rate... did you get a holtere test? do you get dizzy or other sx's with it?}

I did a Holter monitor back in '95 after all the chest symptoms/palpitations first came on.  It showed a couple irregular heart beats but nothing mentionable.  No, I don't get dizzy.  I actually feel more ill/faint.

{i know i did not have the sx's that i experience during mine.and my tilt table of corse my b.p. didn't drop, so some docs won't believe i have oH (orthostatic hypotension) ... that's ok , because i know anyways.}

Yes, I remember you said your tilt table was normal but you documented the orthostatic hypotension yourself, and if I remember correctly it dropped pretty low!  Do you have this all the time or is it intermittent?  I am grateful I do not have this, as I know it is debilitating, and I am hoping/praying I never get it.  If I have a primary autonomic dysfunction then I probably will in the future, but if it's not primary then I don't think I will get it-but who knows.

{i know how frustured it is when the sx's don't happen during the actual test, so then it all doesn't get documented on results!  I hope you get a docotr that will listen and trust what you say....SOON!}

AMO, since my (final) visit last week with my PCP I have calmed down (some, anyway).  I'm still very angry at all the doctors, especially him, but I am going to try to not let it affect my health.  I don't think there is any hurry to get a neurologist but I am definitely going to pursue it with my gastroent.  If he is unwilling to talk to the practice then I might call my pulmonologist's office (won't be seeing him for another 9 months).  He's the one that gave me the name of the one doctor in that neuro practice to begin with.  And if I have to I will ask my brother to call.  He actually still practices; he's just not in good health at all.  

{I'm at a point righr tnow that i have had so many tests and tired to see more doctors knowing they will want more, and then i decided i want to just get on with living how i have adapted.}

You mentioned you could only walk about 15 feet on your own.  I think you mentioned you used a walker.  Are you able to get around completely with that or do you use a wheelchair as well?  

{I did have a biopsy, the results were not diagnostic, just showing cells that happen with brain disease.  I had it pretty earllly on, and that was something i was able to hold on to while some doctors where going in circles if i had conversion.}

Ok, I wondered if you had ever had one done.  I really don't know anything about them, just thought a biopsy might be elucidating.  You mean some of them still thought you might have conversion disorder even after your biopsy was abnormal??  Nothing would surprise me about doctors any more.

{The day two movemnt specialists went overr my scansss with my husband and i, anda they first discussed msa-c. I had read about it,so i knew what was coming, my poor husband didn't . They were very dirrect when thye discuss the 10 year survival, but they were gentle at the same time.}

Did you anticipate this was your diagnosis before they even told you or was it on a list of things you thought you might have?  I imagine it was absolutely devastating for your husband as well.  

{One reason they are uncertain now is after these years i seem to not progress 'fast enough' for msa.... while i apreciate their expertice ( they have a handful patient with it)i think they just don't know. I have learned somepaitient have survived up ward 18 years.
i know of people never being completley bed ridden, eatting on their own, and even still able to walkk up til they die.
I still sometimes wonder about a mitochondrial problem.
don't worry about my mention of an autopsy...i still have alot of cells i am usuing! LOL}

Do they have any idea what causes this disease?  Yes, I read about the statistics for MSA--the average length of time before one is in a wheelchair, bedridden, dies, but you are right, there are always exceptions (if you do indeed have MSA).  There is a columnist who writes for my local paper who has had ALS for over 20 years.  I don't think he can speak/obviously is in a wheechair, but he still writes a weekly column.  He defies the odds.  If you do have MSA I hope you defy the odds, too.  Better yet, I hope you don't have it.  I know progressive MS does not have a great prognosis, either (if you have that), but whatever you have I hope you do not fit in a box regarding depressing statistics and that you prove them wrong.

{I read some post also a couple people in your family have addison's?
i will presume they did the blood workup on you for that too?}

Yes, I have two cousins with Addison's but they got it from their mom-she also has it (not a blood relative, so it doesn't actually run in my family).  My one cousin just spent four months travelling around the world, hiking, kayaking, etc., so he can't be that weak/sick.  I know he was, but I assume he is on replacement hormones for everything-I haven't talked to him in a couple years.  I did see an endocrinologist a few years ago who did a urine cortisol on me (for Cushing's), complete thyroid work-up/antibody and celiac disease (which was repeated at Mayo)--all negative.  Howevver, I have had borderline and mildly elevated calcium levels in the past (no doctor before commented on it, but I noticed it in my blood work long ago), and when I was at Mayo in March the dysautonomia doctor noticed that it was mildly elevated from my Dec. work-up there).  He repeated my calcium and did a PTH level on me but they were back to normal in March.  He mentioned my parathyroid gland and that it could be autoimmune in nature (hyperparathyroidism), but he never really said if he thought I had it.  He wrote in his Impression for me to have a repeat calcium done here and I intend to follow up on that, because I have been reading up on hyperparathyroidism and think it could very well be causing many of my sypmtoms if I do have that.  I also had an elevated alk phos at Mayo (the only other thing in the chemistry panel that was abnormal), and I just read that the alk phos can be elevated along with the calcium in primary hyperparathyroidism.  I put in a question to the thryoid/endocrine doctor on the other forum, so I am looking forward to that response.  

{i hope youu have been ablae to keep your ocd at bay, i have family with diffents 'issues' and know it's not easy.}

Thanks, but it's so much a part of me/my brain, I don't really think much about it.  I live alone so it's not much of an issue--if I lived with someone it definitely would be an issue-I'd drive 'em crazy (LOL).  I used to be on meds for it but with everything else going on, I really don't want to take them anymore (too many drugs, too much money, and don't even know if it would work again; sometimes drugs that help at one point don't work at another time).  

{andd yea, i had one doc visit.. his resident examed me(he did not even have the time for me to do it himself!) then res. presented my case to him... i saw him 10 minutes and he caame to his impression....i was dumb founded!
He was the top dog, head of this, pres of that, yada yada yada!
So annie, you never know where it will be(a small practice?) that will be yourr help?}

I'm curious, what was his impression?  Did he believe you were ill but misdiagnosed you, dx you with MSA, or was he one that dismissed you altogether?

{I know it is hard without answers.
when you feelllll bad, and justw ant help!
let me know how you are feeling.
and keep me posted about doctors appts.
i go for a followup tomorrow, so i willl let you know about it.
be well anniie and hope today is a goood day.
p.s. is it ok with you to keep posting here on this thread? let me know what you thinK?}

I will let you know how things go and you do the same-let me know if you learn anything new after your doctor's visit tomorrow.  Yes, this thread is fine with me so long as you don't mind having to hit the 12, 13th, etc., page.  It might eventually be cut off, but if you still want to communicate at that point we can start a new thread.  I hope all goes well with you tomorrow and that you don't get any bad news.  Take care until then.  I look forward to hearing from you.

Avatar universal
hi annie,

i hope you had a good weeekend and felt well as you can.
Do you fatigue easliy?

I am glad you are able to still workk, but i am sure it can be very taxing on you.
I have not worked for awhile now, and my doctors and myself shocked how fast my ssdi wwwent thoriugh(less than three months).
not much monthly, but i can now use medicare which has helped.
I have some pupil issues too(not sure what they called) along with their abnormmmal movemnt.
it must have been scarey for you and your aunt when your sx at the mall. Do you have any residual from it?
I remeebr almost wish for abnormal tests results so it can leadd the doctors to  dx's and vadidatee my symptoms... sad thinking on those terms ya know?

do you keep files of each of your visits?
that is one thing i have done all along, after a visit i havae copy mailed to me...both test results and clinic notes.

YOu definetaly should try  have both your pulmonary and gastro do referalss... and i wouldn't wait another nine monthhs. Sometimes gettting the answers has to be looked at a different angle when your not fitiiing the box.
Keep on them!

I have a  manuaal w/c for out of the house, i do not go anywheere alone so it is easier for whoever to loading and unloading, then it would be with a powerchair(although i would love to have a powerchair and more indepence).
I use my walker indorrs, it has a seat and i  sit and i scoot, but i have more frequent falls and become moreunsafe. OUr house is small and a reg size manual or powerchair does not fit.I need to get a smaller 'travel' w/c for indoors i think now.

Yes i diid think i had msa even before i saw movemnt specialists. My ms neuro had mentioned it (opca)as a differential, i looked it online and in my gut knida knew what was happeningg.
and YES! a couple   docotrs, even with my those tests thought i had conversion.. i just guess they diddn't want to deal ??
(one ms speialist and one neuromuscular, both had residents do the exam, the better docs i have seen want to do the full neuro exam themselves)
and it sould not be just a 15-30 minute appt!
seeing a paitent for that short a timee they could not begoing to understand a patient as a whole.

i do have gastro sx's. I don't know if i will seee a gastro, at least not yet. Your sx's sound more pronounce than mine.
I think some of it though is the brain area that recognises hunger... i have gone days without eatting and then remeber ing it had been two days, and never feeling hunger. Or eatting a couple bites and feeling fulll.
It can be 6-8 hours and i will burp and the food is still there. With the barium swallow test and lyrnoscopy, i know i have problems, and so far don't feel need to have any more. will see.

My  appt last eeek went well, met her NP joingin the group.
She is documenting many of her patients on video,so we did that, sometimes goes to seminares and presnts them to the  doctors. She also offereeed to be speeker at any of the supprot groups if i would go to.

so annie, you keep that faith !
i reall do hope the doctors listen to you.
you deserve that!!
looks likke our thread here may not last much longer.
If you want to write another thats ok.
be well annie, and take good care

Avatar universal

I see that you posted a message on 05/02 but for some reason it is not showing up on my computer--I'm not sure what the problem is.  I will try again later to see if it comes onto the board.  If I still can't read it, I will start a new post under a brand new heading (if you don't first).   I hope your appointment went well for you.  Talk to you later.
Avatar universal

I was finally able to read your post-for some reason it didn't show up for a long time.  I'm glad your appointment went well last week.  We can end this thread--you are are probably getting worn out from all the posting back and forth.  I will be around on the board if you ever want to talk again.  I don't read the board every day but I'm sure you will see postings by me and you can address a post directly to me if you ever want to talk again.  I do intend to discuss getting a neurologist when I see my gastroent. next week.  If he is of no help I will call my pulmonologist, and if no one will help me I will ask my brother to call the neuro practice I wanted to see.  Right now I need to find a PCP.

By the way, there was someone with the username susieQ251 who posted on 4/28 who has OPCA.  I don't know if you would want to talk to her/compare notes, but I saw her post and mentioned to her that there was someone else on this board who had mutisystem atrophy (I didn't mention your name though).  She might be gone now and not even reading that thread any more, but I thought I would mention it to you.  Take good care of yourself, AMO, and I will see you around.  
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