Wow, you've had a lot on your plate! I read your note twice and want to think about it. When did you go to the Mayo? When were your last MRI, LP? Do you only have the 2 chem panels to see the Ca on? Persistently high Ca can be quite symptomatic, depending on the cause. You're right. I am completely ignorant about the types and implications of Horner's. And how old are you again? I wish I could hold everything in my head - it's like a darn sieve. I'm thinking of starting a notebook on people I actually have conversations with. If it wasn't for the 10 or so people that I actually converse with, it wouldn't be very satifysing here at all. Sometimes I tell people really important things and I never know if they have even read my post - not to mention I don't know if I was on the mark. .....enough grumbling...
Have you had a tilt table test?
How long did your episodes of limb weakness last and over what time course did they resolve?
As part of my MS presentation, I, too, have lost perineal sensation, have decreased perineal reflexes and have extraordinary urge incontinence. (Why do the cats always lay down in front of you when you're tearing off to the BR?) I'm almost always at home so I solve it with frequent floor moppings and changes of clothes. (pardon the image) I was never pregnant, so I don't have pelvic trauma to point to and my symptoms came on a little young. I do have overactive bladder, but also have mild retention. I clearly don't get the proper signals at the proper time.
The longer I was in medicine the more I saw two distinct entities emerge as the explanation for really complicated cases. They teach us to explain everything with one diagnosis. That keeps our reasoning tight. But the reality is that life is far more complex. When something doesn't fit, you can either ignore it (not smart), throw away the original hypothesis (silly) or hold on to to it and keep the possibilities open. Sometimes you build parallel theories.
Vertigo is a VERY common problem in MS. I was documented with 4 separate peripheral diagnoses by one of the world's top vertigo experts. I have peripheral Autoimmune Inner Ear Disease. I may also have some central vertigo contributing to the MS (also autoimmune) but there'sno way to tell. I have two diseases. In the medical field, autoimmunity is one place where it is often appropriate and necessary to consider two or more diagnoses simultaneously.
When I was practicing I was known as a dynamite and very intuitive diagnostician. I really miss that. I worked at academic hospital for about 10 years. I would put a kid in with an off-the-wall diagnosis. They would laugh at me in morning rounds (not always kindly) only to find that I had made an impossible diagnosis (ie one that couldn't be made due to lack of fulfilling diagnostic criteria). The more arrogant of my colleagues (subspecialists) would just avoid me for a while rather than eat crow. Head of Pediatrics always noticed though....but I digress..
I see why you think you have some central issues. Let me think awhile. Quix
The first link on page 728 lists CIDP as one of the immune-mediated disorder in which dysautonomia is found. Also read the section at the bottom of page 727 that describes how AN manifests including blurred vision, difficulty swallowing (dysphagia), hair loss, hypotension (your sense of ill feeling during ovualtion may have been chronically low BP, but not enough to cause tachycardia and syncope. The popping/vibrational feeling in the ear could easily be a dysfunction (via neuropathy) of the "tensor tympani" muscle that retracts and releases the eardrum.
The CIDP explains all of your other somatic complaints, though I cannot understand why your doc (who dx'd the AN) wouldn't have thought of this. Clearly AN does not alwys stand alone, in fact, some of what I have read incates that it is more likely in the company of other diseases and neuropathies.
What do you think???
I will answer your questions and then I will let you think and stop bothering you for today--so take your time. I just thought I would ask you what your thoughts were or if you could shed any more light on my neuro picture (or non-neuro) if more than one thing might be going on. I will post the article regarding the Horner's with the sweating patterns some time later if you want.
I went to Mayo this past December and March. I had the MRI-brain (good machine) in Dec. and the LP in March, both normal. She also tested for Lyme in CSF and it was negative. Proteins normal. Not sure if she "tested" for neurosarcoidosis but I think I read proteins usually elevated in neurosarcoid.
I had two chem panels in between-done in 2002 and 2003, I believe-and calcium was normal both times. I did have a slightly elevated alk phos in the Dec. '06 chem panel along with the mildly elevated calcium, which I read is also seen with hyperparathryoidism. My brother said he has even seen normal calciums with hyperparathyroidism. I'm actually hoping I have this as it could explain at least some of my symptoms and is treatable. I have a cousin with thyroid disease (actually had cancer) but no other endocrine stuff in my family other than two cousins with Addison's (but their mom has it--my uncle's wife--so not in my family). I also went through menopause early at 43 (now 44)--possibly related?
Other symptoms I forgot to mention---I have had major fatigue for years (partly due to lack of sleep but significant even when I do sleep well). Also, chronic pounding of my heart on left side (slow palpitations)-very uncomfortable, which also got significantly worse during ovulation along with faintness, weak feeling in chest/breathing, right mouth droop and left-sided weakness. I also forgot to mention I have intermittent mild tingling in left hand and foot/heavy feeling in left arm and leg. Never had numbness though.
I can see why you would get frustrated if people don't even bother to respond and at least let you know that you helped to point them in the right direction or gave them ideas about what might be going on with them, especially after the significant amount of time and research that you put into answering people's questions. They could at least thank you for your post so that you know they even read it. On my part, I've noticed that almost every person who has come on here (and there haven't been many) who has a significant/primary dysautonomia disappears after they ask their initial question/post. It gets on my nerves! It's like I finally think I've found someone whom I can ask questions of (especially concerning the gastroparesis) and what their symptoms are, why they had to go on feeding tubes (a fear of mine), and then they disappear. I don't know if I scare them away with all my questions or what. I tried to start a dialogue with someone on the gastroent. forum whose daughter has severe GP and had to go on a jejunostomy tube, and then she disappeared too, just like "pickledfairy"--what a name (that AMO pointed out to me on this board)--she flitted away also. My gastro doesn't tell me anything, so I don't get any info from him. He was nice/normal the first visit and immediately after he discovered the GP, but he got weird on me after that (talks real fast, nervous and over me/doesn't answer my questions)--but that doesn't surprise me due to the other stuff that went on with my PCP and the neurology practice refusing to see me--I think it's all related.
Well, moving on. Yes, I had a tilt table test and it was normal. As I told the MS doc before she did it, I don't get dizzy upon standing (my faintness is more of an ill/sick feeling). There were times when I was ovulating (but other times as well) when I actually felt as thought I was going to go unconscious--and this is honestly not an exaggeration. I still get this way and sometimes it will be bad for weeks.
When the left-sided leg and arm weakness came on in May '99 it might have lasted a few weeks-not sure. It was mild as I said, mostly like my foot dragged a little. During ovulation (I hate to keep bringing this up, but there is definitely a link) it would get exacerbated along with the tingling/heaviness, but still not significant except that one time when it was very significant at the mall, and I think from what I wrote in my journal that was about 4 months after the initial weakness started in '99). Right now I seem to have weakness in my left foot (not sure if due to same thing or not). I have to curl my toes (actually they automatically curl down with each foot step I take when wearing thongs/sandals) or my shoe falls off.
I'm sorry your urge incontinence problem is so bad (it's definitely worse than mine if you're mopping up often). Does yours fluctuate (mine does)? However, the decreased sensation in my perineal area has been pretty constant for 5 years now. I've only had a few accidents and all were at home. I am home most of the time too (I only work part-time from the house). You mentioned you had urinary retention as well at times. I have never had this (was tested at a Mayo as part of the dysautonomia work-up). I know it can also be seen with MS but retention is, as far as I can tell from my reading, always what is seen with dysautonomia that is due to a peripheral neuropathy, not urge incontinence, if there is a problem with the bladder. That is another reason I don't think I have a peripheral neuropathy. All the articles I read say retention is what is seen with primary autonomic dysfunction/AAN (peripheral neuropathy), not urge incontinence which is seen in CNS problems. I guess you have a mixture of both. I know both can be seen not only with MS but MSA--also a CNS thing.
I think that what you said regarding more than one problem possibly going on when trying to diagnose is the smart thing to do, especially when you can't fit everything into a neat little box. And I know that what you said about autoimmune diseases is true--sometimes you can have more than one since I guess it is a predisposition for autoimmune disorders in general. I know there are several in my mother's family and not one of us apparently has the same disease (ankylosing spondyltitis and Meniere's in my uncle, interstitial cystitis in my cousin with the thyroid disease and MS in her sister, and another cousin who died at 45 (almost certainly a connective tissue disease, undiagnosed before her death), and then me (whatever one I actually have). So my uncle, like you, has more than one autoimmune disorder, if your inner ear disease is separate from your MS.
I can tell you must have been a good diagnostician and also miss practicing and trying to work your way through problems/putting the jigsaw together or you wouldn't be on this forum trying to do that for others now. I think some doctors are more intellectually curious than others (just like non-doctors). So, anyway, I will go away for today and not force you to read any more long posts by me and will check back later. Thanks.
Sorry about that bit of hysteria. I'm a little jagged on my provigil.
I'm peddling CIDP to all undiagnosed MS-appearing people with normal MRI's. After a couple hundred or so, I'll hit one and can claim a miraculous diagnosis!
I think the Horner's may be part and parcel of the overall dysautonomia and classifying it as a solitary entity may be keeping everyone's thinking too narrow, but I will read up on it.
okay, k'kay, 'kay. 'kay.....whoaaaa.............Ya know how a college student who discovers the meaning of life just HAS to convert everyone they meet? wELL, THAT'S ME!
One, I have done too much on the computer already today. I need to do an in depth epic discourse to you on this topic and just don't have it in me, but I am too excited not to tantalize your with my idea!
I did a medline search and google search on "CIDP dysautonomia." CIDP is a growing group of peripheral neuropathy disorders. Chronic Inflammatory (or Immune) Demyelinating Polyneuropathy (or Polyradiculopathy). I have been convinced for weeks now, if I could understand it better, it would explain some of these people on the forum with severe, widespread bizarre neurologic disorders that look like they should have MS, but have essentially normal CNS tests. I've been reading and reading.
All the things that you suspect are CNS problems with you can be explained by dysautonomia and dysautonomia is a common problem in some forms of CIDP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Blurred vision, the dysphagia could easily be secondary or tertiary spasm of the upper eosphagus from the GP, or from autonomic dysfunction. The stroke-like episode would be a separate sudden and relapsing attack from CIDP. I'm really serious here.
Some people describe CIDP as a chronic, relapsing form of Guillain-Barre Syndrome which is an acute, illness of ascending paralysis. Anyway, all of the signs you mentioned this morning occur in CIDP (whcih would be the primary disorder and one of the affected peripheral neuropathies could be your disautonomia. ooooooooooooooooh, I'm running out of mental energy here.
This is important because many forms of CIDP are very treatable. When you read most articles about it , they state absolutes like "it is alsways symmetrical" or "only motor" or legs more than arms or vice versa. I've read enough now to know that those restrictions are going out the window. More and more variants are being described and delineated genetically and biochemically., such as forms with more sensory involvement, or assymetrical sensory (numbness/tingling) and motor (weakness/paralysis)
Here is a neuro text article:
I read enough in it to get excited. Here's a link for the layman. Read it for it's generalities, not it's absolute definitions.
http://www.cidpusa.org/variants.html (list of abstracts)
The last link is just a teaser (abstract) mentioning the necessity of looking for other perpheral neuropathie once you have diagnosed autonomic neuropathy.
I know you said your CSF was normal, but I would like you to read some of this stuff. It shows how a large number of separate peripheral neuropathies can mimic illnesses like MS or ALS. Theres a couple placess I can look to see how important and at what stages the CSF protein is elevated. I'm blabbering now because my eyes are goofing up and I can't go back to edit. Look at these links, google CIDP and dysautonomia, take some notes. I'll read further later.
Right now I have togo lie doqn. Quiz
You don't need to apologize (LOL). I see (from your posts to others as well) that you have been reading up on CIDP. I also get excited when I think I have hit upon something (that is how I felt after the gastroparesis dx last year; I went on the internet (not even knowing what GP really was) and immediately saw it was caused by autonomic neuropathy (I didn't know much about that, either). I looked that up, saw Horner's was also a type of dysautonomia, and then the ball started rolling, eventually getting me referred to Mayo. CIDP could indeed be the answer for some people here who have unexplained extremity weakness, heat intolerance, etc., and have normal MRIs. I don't know a lot about it but I do know some. I *also* thought I might have it in the past but I no longer think this (I'll tell you why I thought I might have it and why I no longer think that I do, and you can tell me what you think). I might be mistaken about some of my info (you can correct me if I'm wrong), as I don't remember everything I read, either, but I did research it fairly well right before and right after my Dec. Mayo visit.
I, too, read that some people with CIDP have dysautonomia. In fact there was a person on this forum last year who was in very bad shape-very scary-and had significant dysautonomia (much worse than mine) with severe gastroparesis (like me). His diaphragm/breathing muscles were affected, though (something is going on with my breathing as well-weak, slowed, mechanical effort I have had since '94 after viral infection--once again, exacerbated my ovulation), BUT my SNIF test was normal at Mayo showing no paralysis of my diaphragm). There is also the heat intolerance in CIDP since it is demyelinating (which I also have). I also read you could have the trouble swallowing (though I am not sure if it is oropharyngeal with CIDP (my dysphagia is in my throat-a chronic thumping I have in my throat/neck on the left side when I swallow). I can't remember if I read that blurred vision could be seen in CIDP but I did read it could be seen with AAN (primary autoimmune autonom. neuropathy), which is also peripheral, so that wouldn't surprise me.
Now to the reasons I think I *don't* have it. My first definite neurologic sign/symptom was in '90 and that was the Horner's (very first thing I had). CIDP, as you mentioned, usually is ascending up the body (legs first), and whatever I have started with my head. Also, the mild urge incontinence I have. I think urinary retention and not urge incontinence is associated with CIDP, but I might be wrong about this. I thought that was the case with peripheral neuropathies in general (another reason I don't think I have a primary AAN/peripheral neuropathy as the dysautonomia doctor thought). Also, and more importantly, I am absolutely convinced that I had a first-order/central Horner's from my memory and journal documentation of the particular sweating pattern I had (I'll post this article later). This could have been an isolated/unconnected event but I don't think so since it is a type of dysautonomia and then years later I get severe GP, also dysautonomia, so I think they are connected.
Now to the symmetry. I read the same as you, that CIDP is always symmetrical, but my mild fluctuating weakness started in my left leg and arm-no weakness on right side except upper mouth. That started 8 years ago and 17 1/2 years after onset of Horner's. I did read that MMN (multifocal motor neuropathy, which I guess is similar but not a true CIDP) involves only or normally starts on one side/asymmetrical and involves either no or only mild paresthesias--so then I started thinking maybe I had MMN :), but from my reading I think that both CIDP and MMN involve a lot more muscle weakness than I actually have. They couldn't even tell on exam at Mayo that I have any muscle weakness except mild decreased rapid alternating movements (or something) in my left hand. The only time I had major muscle weakness in my left leg (and probably left arm, but can't remember) was when I was walking in the mall that time and it suddenly came on along with the slurred speech, slowed breathing, etc.). Also, as you mentioned, there is usually increased protein in the CSF with CIDP (mine was normal) and there is some antibody in the blood work that they look for that is sometimes elevated/seen. Not sure if they did that in my BW at Mayo or not. Also, as of three years ago I had a normal EMG (which I didn't mention to you before). I think this would very likely be abnormal in CIDP--so that is probably one of the biggest reasons against it.
I didn't know hair loss was seen with AN, but I guess if a gland is involved it could well be. (I will read this). I figure my hair loss is either due to my dysautonomia affecting a gland, my possible primary hyperparathyroidism, or because I have some undxd connective tissue disease that is the cause of my autonomic and other neuropathy as well as hair loss.
Also, when I got sick(er) every month at ovulation, it was an exacerbation of what I vaguely feel all the time. It's not a low blood pressure/dizziness sort of thing. It's totally different. I felt very ill/faint and sometimes on the verge of unconsciousness. My breathing would slow down (my respirations are only about 6 every time I count them anyway), and my chest would become very weak, as though I had to consciously force my chest to go up and down. This would start on the first day of ovulation (I always had pain so I knew when it was) and last for 4-5 days every single time. I think that hormones exacerbated what is already going on with me. I really am hoping this has to do with hyperparathryoidism and elevated calciums (I know it might be a long shot, but I'm still hoping). Also, when i got back from Mayo the first time (and my calcium was elevated that visit), I started feeling ill the day after I got back-weak chest, faint, slowed breathing (not from ovulation this time), so I think it could be due to the elevated calcium. I've read that one does not need to have a real high calcium in hyperparathyoidism in order for it to cause symptoms. This is all speculation, of course, on my part. As I said, I plan to follow up with the new PCP in July regarding this.
As far as what they told me at Mayo, well, the first time I went up I was sent to an MS specialist and only saw her. She knew that I had the gastroparesis and asked me a bunch of questions and thought I could have an autoimmune autonomic neuropathy (this was before the autonomic lab tests and all the BW were actually done). When I asked her about the leg/arm weakness/tingling and other symptoms (nonautonomic) she mentioned that perhaps I could have some CIDP as well. (She knew my MRIs for MS had been normal and I'm not sure if she had even examined me at that point.) Anyway, she just threw it out there, but I don't think she ever really thought I had it and it was never mentioned again and no mention of it was in my notes, so I don't think either neurologist thinks it's a possibility. Then she went on to examine me and do all the testing and we talked a little more the next visit. The dysautonomia doctor never mentioned CIDP or MS or anything else as a possible explanation for my other neuro-type symptoms because he apparently doesn't believe I have anything else going on neurologically. He thinks I have a limited form of AAN (primary) and possibly hyperparathyroidism (I am glad he picked up on that). For instance, regarding my right mouth drooping--he wrote in his note that that could be due to the car accident I had in '90 when I damaged the right side of my face (broke cheek bone and jaw), but I didn't get the mouth droop until '98 along with the right blurred vision, and the mouth droop has been associated with slurred speech in the past, made worse by ovulation. It is an immune thing, I know it; it has nothing to do with my car accident! And you are write, although I cannnot find any statistics on the prevalence of a primary AAN, I know it is pretty rare, but so is CIDP (I think it is approximately 1 out of 100,000). Honestly, I no longer think I have either one of these things. I still think it's possible (though I know it's unlikely) I have MS or else I have a connective tissue disease that is affecting my CNS. But you are right, CIDP affects a lot more than just the legs and arms. Well, those are my thoughts, but I know nothing is for sure until either future blood work or MRIs pick up on something to link my dysautonomia and other neuro symptoms to a cause. I will find the article on the Horner's and you can let me know what you think if you want. I thought it was an interesting article, but that is probably because I had it happen to me and it cleared up some questions for me (I think). If I ever get in to see a neurologist I intend to ask him/her about the Horner's and the sweating pattern I had. As you can see I am "fixated" on this, but I really do believe it is significant with regards to whether I have a peripheral vs. CNS neuropathy. In the meantime I will read those articles on CIDP as well. Thanks for all your reading/input. Now you know why no doctor could figure out what was wrong with me--(that and all the other extraneous BS that took place). I'll find the Horner's article.
I actually think it might be too long to post in the space here, so here is the link. Mainly I would like you to read (if you have the time) the part about first-order Horner's being due to CNS origin and involving hemibody anhidrosis. Thanks again.
I have to run.. No time. The old stuff about "always symmentrical" an dascending" is all gone!!! I'll find the freferences. CIDP still fits. We'll discuss the urinary stuff too.
In one of the articles on AN it mentions that the problems caused can be nerve failure OR nerve hyperstimulation (possibly due to failure of inhibition).
The urinary system is effected by the CNS, the peripheral system, and by both branches of the autonomic system, sympathetic and parasympathetic. Disruption at any point can cause incontinence. Pure retention is usually a CNS phenomenon.
Here is an excellent and readable article on "neurogenic bladder." It covers everything you were asking about what different types of incontinence imply.
Ok, I read all four articles and the first three didn't convince me but the last one I read (that mentioned all the different variants (assymetric, how CIDP can present with ophthalmologic features or ptosis years before leg weakness occurs, how CIDP can be seen in conjunction with CNS demyelination, etc.) definitely opens the door more/is more inclusive. Believe it or not I had every one of these articles already saved in my "Favorite Places"--when I went to save them they were already saved, so I had already read them. Apparently I don't remember a lot of what I read! I do recall the MMN and the Lewis-Sumner variants, though. They were the two that stuck out to me as being possibilities in the past because they were (if I remember correctly) both asymmetric in presentation, and I believe that the MMN had no or little parasthesias (which fits my mild intermittent tingling with no numbness). But I think I dismissed MMN when I read about the significant muscle weakness that is characteristic of it (comparable to ALS), and I think the Lewis-Sumner variant I dismissed because it soundled like one had significant paresthesias with it, but I have to go back and look up each of these again and read further on them. There was another variant (multifocal chronic inflammatory polyneuropathy?) that sounded more like what I could have if I do have CIDP.
I actually was convinced I had CIDP for about six months last year, but then discarded the idea, but you might be right that it is still a possibility. I will keep an open mind. I am not sure if I was the one who mentioned it to the MS specialist last December or if she brought it up first when I asked her about my mild past/intermittent extremity weakness/tingling, but she never brought it up again or mentioned that she thought I had it in her notes. I did ask a question of the forum neuro last Dec. after I returned from Mayo the first visit and he/she did say CIDP was a possibility/might fit, but I'm not sure if I influenced the forum doctor by saying that the Mayo neuro mentioned it. Also, six months ago I thought I had a primary AAN (I misunderstood what the neuro at Mayo was telling me when she said she thought I had "autoimmune autonomic neuropathy" (it never occured to me that it could be *secondary* to another autoimmune disease (lupus, Sjogren's, scleroderma, etc.), but I've learned quite a bit since then, although the dysautonomia doc thinks it is a primary AAN.
Anyway, I will look up a few of the different variants that are asymmetric and read more on them. But I still don't see how the mild urge incontinence (which I believe involves the CNS, not peripheral nervous system--correct me if I am wrong!) fits in, and I still believe my Horner's was a CNS thing thing. Also, my EMGs were normal. How do I get around the normal EMGs? Would they have to test certain specific muscle fibers to pick it up? Thanks again and I will talk to you later.
I have had all the wind knocked out of my sails for now. It is clear to me that AN certainly is a common subset of the primary CIDP. I think that is the point I was trying so hilariously to make.
Here is the site that convinced me the variants would incompass a lot of the people we see.
The link I provided is an outline - either of a series of lectures or for a course. Thus, they refer to stuff the reader/listener is supposed to already know. But scroll down and look at the variations described. I suspect you are familiar with more lingo than I.
However, I do think the NCS/NCV studies are critical.
I can't save the world, and, it looks like I can't save myself.
BTW - I got my latest MRI results today, and, if there was ever a doubt as to my diagnosis, it is gone. There were 6 old (not active) lesions picked up: 2 in the medulla, 2 in the cervical spine, and 2 in the thoracic spine. Along with the one in the noggin, it's offical. I can have my MS card laminated...
My neuro definitely wants me off the hydrocodone. He doesn't understand how it could possibly help, therefore it DOES NOT help. (ie. Sir, there is no compression seen on your MRI, therefore you can not be in pain) We're going to try other things. If they work now as well as they worked in the past, I won't be spending any time on the computer. He also implied that my sensitivity to eye movement could also be a by-product of anxiety (something I've never had) or depression, which I've had chronically for 20 years. It is not a vegetative somatization.
It's the only thing that gives me any steadiness. We'll see. I'm willing to try and use anything that allows me to function.
I will go to both the CIDP site as well as the one on neurogenic bladder that you mentioned above and read more on both, especially the CIDP variants.
I am sorry you now have a definite diagnosis of MS. I imagine you probably feel a mixture of upset/distress but also might be relieved to finally have the lingering doubts regarding an explanation for your symptoms dispelled. I know I was "excited" (and upset) when the tests finally revealed at least in part what was going on with me, not because I wanted to be sick, but because something was finally confirming that I was. It's a confirmation of one's sanity, credibility, etc.
Well, in some ways it is good that you know for sure, especially since you started on one of the injectable drugs for MS already. I think it is better to know exactly what something is called, what it entails (although I know MS is highly variable), than to know something is going on but not know just what that something is or what to do about it. Hopefully the drug will prevent you from progressing as quickly as you might have otherwise. I've read a lot on MS (probably more than any other disease), so I know there is a lot of variability among the course it takes. Have you been told you are relapsing-remitting or secondary progressive or what? My cousin has MS and she is doing pretty well (I think she is probably still RRMS). She has more lesions than symptoms apparently. She was on one of the injectables, too, but went off it due to side effects. She was one of the "lucky" ones who got optic neuritis, went to the ophthalmologist, who sent her to a neuro who did an MRI which showed lesions. No 15-20 years of trying to get someone to listen/figure it all out for her! She is turning 50 this month, I believe, and functions well. Do you have any significant weakness in your legs or arms or do your symptoms mostly involve the vertigo, fatigue and inability to focus your eyes (is that part of the vertigo?) or is that what nystagmus is (I never understood what that was). I've never had vertigo so I can only imagine what having chronic unremitting vertigo is like, with the nausea and dizziness.
You said your neuro does not understand how the hydrocodone helps with the vertigo/inability to focus your eyes/eye movement (correct me if I'm wrong if that is not what it helps with). Have you tried other drugs for this and not had any success? Do you think you will have any trouble (physically) coming off that dose (I have no idea how high a dose what you take is-I know little about drugs or narcotics), or are you solely worried the eye movement stuff will get worse and no other drug will help with that?
I didn't know you struggled with chronic depression. I've had major depression for many years in the past (even had ECT twice back in the '80s and was hospitalized long-term), but now it is mostly situational (circumstances) in my life--depression over not feeling well and not being able to do anything about it up to this point (hopefully that will change), anger-turned-into-depression over what I have been put through by my doctors, lack of money for basic things I need, and some other factors in my life/family. I haven't taken any psychotropic drugs in 13 years, but I am going to ask my new PCP about starting something, mainly for the anxiety I feel around people, though. Do you think your chronic depression is due to your health problems (I think you mentioned your vertigo started over 20 years ago but then got worse in the '90s)? You don't have to share anything if you don't want. It's hard to know, when people write things on this board, if they want to talk more about something or not. I'm pretty open on here (and I am always honest simply because I am an honest person) because I figure no one knows who I really am (Annie is not even my real name (LOL)-although it's my middle name).
I hope your getting a definitive MS diagnosis hasn't been too upsetting but instead gives you a sense of assurance and direction regarding your illness--now you know what it is for sure (as well as being able to say to any doctor who doubted the organic reality of your symptoms or that you might have MS as you thought, "I told you so, you bas***d. Now you can send your letter too :)
I'm a mess today and can't be of any help to anyone. I wrote an answer to Sherrizim - the floodgates opened and my angst poured out. If you read that (top of the first page) you'll see what's going on.
My dose is one that would be used for moderate pain. It's low enough that I have almost no withdrawal from it when I stop it. I started a scopolamine patch (for motion sickness) today and I'm tapering the vicodin. My vertigo is already at a level that makes further work at the computer prohibitive. The neuro mentioned that this problem is also sometimes seen in post-concussive symdromes (it began in 1983 with the vertigo after a bad head injury, interesting enough) and in migraine sufferers. I do have migraines, but they've been under good control. Maybe I'll talk to him about some of the meds used in migraine, like Topomax, if the scopolamine doesn't work. But, it IS NOT A somatization from anxiety or depression.
I'll check back some time later. I need to defragment my hard disk and this is a good time.
Thanks for your friendship, quix
I do have a lot of motor disability. My R hip flexors are very weak and the spasticity extends from my lumbar spine to my R foot, give me a function toe-drop as I walk. I have a brace for the leg and need to use a cane for balance. My right arm has lost a lot of strength, and my R (dominant) is far less coordinated. I have frequent urge incontinence and no balance left. This is all within the last 32 months of symptoms. Myleft hand tremors badly, making it hard to even knit. The fatigue is the most debilitating and having to drag the leg around.
My depression is a family curse. Began with a disastrous marriage to a sociopath. About the time I got rid of him the vertigo hit. We don't think the vertigo from 1999 was MS. It's not at all clear if there is some vertigo from a CNS cause working now.
I'm not able to help people right now. Maybe in a few days. Quizx
I tried to post last night but the page kept getting timed out and wouldn't let me on when I hit the "post" button. Once again l didn't get much sleep last night, so I hope I make some sense.
I didn't realize you had that much weakness in your right leg (and arm) and have to use a brace and a cane. You may have posted that in the past but I couldn't remember. I'm sorry about that. It sounds like things have gotten worse with your MS in a relatively short period of time (32 months, I think you said). And again, I am sorry that the diagnosis is definitive now. That probably created a lot of opposing emotions for you (perhaps some relief to get a definitive dx/vindication with regards to your symptoms and what went on with the neuro, as well as fear and anger about your current situation and what the future holds).
I read your post to Sherrizim last night regarding your Vicodin use and your vertigo. It's hard for me to know what to say about this because I don't know much about drugs other than that the hydrocodone in Vicodin is a narcotic, and of course potentially addictive (you said you are on a low-moderate dose) or at what point one could become physically (and emotionally) dependent. I'm just curious, (and don't get mad at me, because I am only trying to understand and am not being critical of you), but how do you explain its helping with the disabling vertigo (the eye movements bringing on the dizziness and nausea) if the drug is not known to help with that? You are obviously a very logical person (not somebody who takes a cinnamon cap and thinks its going to cure her lupus--just an example that I made up), so do you think you have found some off-label use for this drug or do you think it really is "helping" you feel better in *other* ways (or both)? If you say it helps with your vertigo/dizziness I cerainly am not going to tell you it can't possibly do that, but I just would like to know how you understand it.
And as far as the personally dishonest Rush Limbaugh--I won't even go there. He's just one more in a long line of conservative hypocrites who selectively apply their humanity, self-serving and reserving that humanity for themselves and those who think like them--and nobody else.
So, if you go without the Vicodin you only have jumpiness for a few hours and then you are back to the status quo (except that the vertigo/dizziness gets worse)? You called it withdrawal. As I said, I don't know much about narcotics, but do you think you are physically and emotionally addicted to this drug?
Nobody is as disgusted by the Bush administration as I am, but what is your understanding of why narcotic Rx's written by physicians (for themselves and others) are monitored closely? Do you think there is no good reason for this or that it should be on an individual basis or what? Regardless, I do not think that a doctor that uses narcotics is "despicable," or anyone else for that matter. These drugs exist for a reason, and if one needs narcotics to relieve pain, then they are invaluable. However, I still am not sure if the Vicodin is providing you relief from your vertigo (pain) or other things you are dealing with in your life (depression, MS, loss of your career that you obviously cared about and made you feel worthwhile and productive), or both. You are the one who knows that better than anyone else.
You said that you haven't found another physician who will agree to "help me with the problem," meaning to keep prescribing the Vicodin for your vertigo. Well, maybe the scopolomine patch will work. Give it a chance, Quix. You said you shouldn't have any withdrawal if you taper the Vicodin over a 3-4-day period, and I hope that is the case. If you really aren't all that physically addicted to it at the dosage you have been taking, that is great. You do appear to be very emotionally attached to it. I know that's partly because it helps with your vertigo, and you do not want that disabling problem to return full-force, but I get the feeling that your attachment is more than just that...
Quix, if it turns out that the scopolomine or some other drug works for your vertigo, would you *still* need the Vicodin to relieve your "pain?" Possibly yes? I don't know all that narcotic dependency entails (you're a physician, you know better than I), and if you don't drive and are mostly staying home, then you are probably not "hurting anyone else." I think the question is whether or not you are hurting yourself, not others. Well, it looks like you are coming off of it because you haven't found a new PCP or your current neuro who will write you an Rx for it, and I really hope you are right that you will have no physical withdrawal if you taper over a period of 3-4 days. I also hope the scopolomine IS effective for you and that you no longer need or want the Vicodin at all. Maybe I am over-reacting to your use of Vicodin, maybe I am under-reacting--I'm not really sure. Regarding addiction, I do have a brother who was a crack addict (not my brother who is a doctor, a different brother) and I know what it can do to one's life. He has been in NA for over 15 years and goes loyally, knowing it is his salvation and ongoing support system--once an addict, always an addict. One of his friends from NA (an older man) is a retired physician. He self-prescribed and became addicted to narcotics. One of my brother's old friends was a family practitioner here in town. He used to write prescriptions for himself and all his friends. His license was suspended years ago and I'm not sure if he even practices any more or if he just left town. He's probably still an addict. I think it's just plain sad.
Well, I hope I didn't misread your situation from the little that I know about it. I will be online again later in the day. Let me know how your tapering off the Vicodin goes and if you started the scopolomine yet (can't remember what you wrote) and if it is helping. And you are welcome for my friendship and have an online friend whenever you need to talk. I am home a lot, too, for a few different reasons, so I'm not going anywhere. Take care of yourself and just try to get through the next few days.
ALERT! Epic Discourse ahead--
No, your response is the typical lay and professional response to my dilemma. I don't even know if I can be clear at all about it, because I have been over and over the same questions as you have posed. It's why I fear that I will be left untreated. I want you to notice that at no time did you actually consider that the narcotic could be having a beneficial effect - playing the "Devil's Advocate, I hope. Why are warts suggestible (double blind studies show that "wart-charming" is faster and twice as effective as most chemical treatments)
The symptom: Upon fatiguing or after riding in a car lateral movement of my eyes (a glance) stimulates a whirling/dizziness which causes disorientation and nausea. I can't walk well, I stumble, my language becomes disfluent, my head roars, I can't track with my eyes to read, and I become hypersensitive to sound. At this point I am incapacitated to the point where I wonder if I want to live. Before the hydrocodone I would take any and everything (except alcohol which made it worse) until I fell asleep.
This occurred first in the early 1980's after a bad, botched spinal anesthesia. Post-op I fell and suffered a fairly bad concussion. Thereafter, the symptom we are now calling "sensitivity to eye movement" (STEM) would appear periodically, and was merely annoying. I tried twice to explain it to neurologists once in 1985 and once in 1989. They both got glassy-eyed and told me nothing was wrong. I built three busy, successful pediatric practices.
After the suspected inner ear infection in 1999, I had several more falls and 2 more concussions. I had 10 hospitalizations, and 8 ICU stays. I was out a year, mostly bedridden, and finally treated and had ear surgery. Then I was able to go back to practice for another year. But, I slowly failed that year, suffering from increasing fatigue and cognitive dysfunction, until one day (after a horrific night on call) I would have let a premie die, if there had not been colleagues right there to pass the baby onto. I left practice at that moment.
I could be up in the morning for an hour or two before the STEM would set in. Then back to bed and asleep for up to 17 hours a day. I had incidental foot surgery, and noticed that while on the Vicodin the STEM was markedly suppressed and I had more hours of functioning awake. My personal physician saw the effect immediately and had no problem prescribing a couple tablets a day for me.
I was mostly bedridden for the next two years. Then I discovered that if I took three doses (3 tablets) over the course of the day, I could be up and active longer doing at least something. For a while this was quilting, and a cursory attempt at keeping my house clean. So by 2002 I was on 22.5mg a day. My doctors were all aware of the use, and my new internist felt it was no problem to continue the scripts. A couple times I ran out and he was gone (partners would often refuse). So I went through withdrawal. An evening of jumpiness, a valium to sleep then it was over. When you read about addicts "detoxing" they are referring to 3 days of pain, nausea and vomiting, terrors and willingness to commit crimes to ease the pain. Many meds without the narcotic stigma have severe withdrawal symptoms that can even be life threatening. This can be true of some anti-depressants and antiseizure meds. A twice weekly low dose of valium (5mg) can cause a 6 week withdrawal hell. I know. During one of my hospitalizations (3 weeks) I got huge doses of Ativan (cousin to valium). When they discharged me I was jumpy, agitated, unable to sleep, irritable and felt like **** for over a month. I had the Ativan at home, but wouldn't use it knowing that, if I did, I was just postponing the hell. I know what withdrawal is.
My physical dependence on it is minor. Though there was a nice "buzz" when I first started it, that disappeared after a few weeks. I don't get or expect a high or a euphoria. I don't even fear "withdrawal." It is no worse than an uncomfortable night with my MS when I have Restless Limb Syndrome (common in MS). There have been several times when, for one reason or another, one day the vertigo symptom didn't develop. It never occurred to me to take the vicodin. Earlier this year the vertigo worsened, my use had started to creep up and I was worried. I discussed it with my internist and my new MS neuro. But, right at that time I started Provigil for the fatigue. It immediately stabilized the vertigo a bit, and my use of vicodin dropped instantly, to a lower level than I had been at for the last three years. For this reason I do not believe I am "addicted" to it. When I look at the criteria for determining true "addiction" I do not fulfill them.
I have not needed progressively more - stable for over 4 years.
I don't use it to alter my mental status.
Less can often do the job.
I have minimal symptoms when I have to go without it.
Worrying about obtaining it does not disrupt my life (until now)
I have taken no steps to hide, or mislead people about the amount I use.
My emotional dependence on it is huge. Why? I have thought about this a lot. I fear being left in that incapacitating state where I can't function at all. I would rather be dead and I say that calmly and with certainty. Being in pain doesn't hold a candle to the horror of how I feel when the vertigo STEM is unchecked.
Would I trade it for something that worked as well? Absolutely yes! I am wearing my new scopolamine patch. Did I take a vicodin this am? Yes, because last night I took my Avonex shot and today I am wracked with myalgic (muscle ) pain. This side effect will be gone by tomorrow and by then I should have a good level of the new med. I'll begin the taper tonight or tomorrow. If scopolamine doesn't work I'll ask about Topomax, or Lyrica or anything else my neuro suggests.
But, to the Devil's Advocates among you: I am confined to my house and my recliner, I'm always dizzy, nauseated, off-balance, my right leg doesn't work, the spasticity causes my lower back to spasm and hurt, I'm incontinent part of the time, I can't enjoy traveling, or movies, or shopping. I keep the shades pulled because of photophobia. I get lightening jabs down my leg every time I drop my head a little forward. I can't even enjoy a relaxing hot shower (forbidden by MS neuro - it can actually exacerbate the disease. cool or tepid only - great) Heat makes me collapse, I can't do much of use except knit or work on the computer when my eyes are steady. Every morning I make up a reason to give this day some purpose. So what! if I use a legal med in low doses to feel better? Why does it work? It stabilizes something, I don't know. Does it REALLY matter?
I hope I didn't offend you as I finished my rant yesterday. My emotions were running high. I did come off harsh at the end, but it has all passed and I seem to be doing a little better on the scopolamine patch.
Did you have a chance to look at the two new links? It would be so cool if some conections were made for you. Tomorrow I will read the Horner's data. You know the Horner's could be unrelated to the rest of what's happening, couldn't it?
No, you didn't offend me but I was a little upset after I read your post. I wasn't playing devil's advocate, either; I was just telling you what I thought, and that is all. As I said, I don't know anything about narcotics or what dosages/length of time are required before one has the potential to become physically addicted to a particular narcotic. I was not implying you were a drug addict, or that you were doing anything "unsavory," so I hope you didn't take it that way; I was only concerned that you might be-or be becoming-dependent on a drug that might be harming you in ways you weren't even totally aware of (maybe making you depressed, keeping you more housebound, mood changes, etc.), or that you might suffer physically when trying to come off of it. But you are a physician and I am a layperson, and I don't profess to know what the less than 30 mg a day you take would have on your mind or body after taking it for a few years as you have. Having said that, I hope you are making a smooth transition with no major physical effects if you've started to taper off of it. I don't have any particular "moral" opinion about drug use (whether narcotic/legal or illegal); I just don't like to see people harm themselves in any way, and if you only got help from the hydrocodone and no harm was done or will be done to you when you come off of it, then my concerns in the above post are irrelevant. My brother (the one who is a physician) became addicted to morphine while he was in a drug-induced coma and hooked to a ventilator for six weeks after his car accident. No emotional attachment, but a serious physical one nonetheless. When he went off it after he was sent to rehab (and he was determined he was going to come off it quickly), he went through an absolute physical and mental living hell in addition to all else that he was dealing with. Anyway, I hope the scopolomine works for you. And, yes, I realize you are probably emotional right now having gotten the news that you indeed have MS and are probably replaying in your mind the dismissiveness of your neuro in the past and the fact that you could have been on Avonex sooner and wondering if that might have prevented some of the disability you seem to have acquired just in the past 2-3 years if your concerns and symptoms were taken seriously at the time. I know what it's like to have regrets.
No, I haven't read the last two articles yet. I will try to read them later today. I do see what you are saying about the asymmetric exceptions to the rule. I'm still not clear about the urge incontinence vs. urinary retention, so I will read the neurogenic bladder article later, too. The impression I have gotten thus far is that urinary retention, not urge incontinence, is seen with peripheral neuropathies, whether AAN or CIDP, but I will read further. As far as the Horner's, I have considered that it might have been an isolated event and not connected to anything that came later, but because it was neurologic and autonomic in nature, I do believe it's related to my other neuro symptoms, autonomic and otherwise. I never had a headache (or anything else) associated with it at the time. Since there are only a few listed causes for 1st order--stroke, syphilitic lesion, syringomyelia, brain tumor, demyelinating lesion, I don't know what to make of it in light of my negative brain MRIs. Of course I didn't have an MRI of my brain at the time. I am hoping my new PCP will have had time to go over some of my records by the time I see him in July, and I intend to ask him about a few different things (sarcoidosis, vasculitis, CIDP, hyperparathyroidism). The new guy seems more approachable and easy to talk to. He is supposed to be a good doctor and he had the decency to take me on when he almost certainly was informed by my pulmonologist (their office gave me his name) that I was a patient with a long history of symptoms dismissed by numerous doctors in this town, now found to have autonomic neuropathy. I do think it is possible I have a couple different things; as you know yourself, it's not that uncommon to have more than one autoimmune disease, and some of my symptoms, especially the chest stuff that came on in '94, just doesn't seem to fit in with anything else.
Well, I'll read them later. I need to get off the computer and either do some errands today or yard work (or both) before my neighbors start complaining. If I don't start early I usually am so tired by lunch time that I waste another day and don't get anything done. Everyone on my street has lawn care and manicured lawns and mine is starting to look a little jungle-like, especially in the back. Last week I got a "card" left on my door from a lawn treatment company that a lot of people on my street use saying they were "referred" by one of my neighbors (LOL). It's enough to make one paranoid, but even if I had the money I wouldn't use pesticides/chemical treatments, so I guess they are going to have to live with the "affront", but I do need to get out there and work some.
I hope you are doing better. I am not mad and I hope you aren't either. Let me know how it goes with your new med-the scopolomine-and if it is helping. I assume this is a drug you have not tried in the past.
I'm back among the non-dispairing. I understand the intent in your post, thanks. The physician (new out of training) who sees my parents has agreed to see me and continue the med. We signed a "narcotic Use contract" so his integrity is preserved. I don't have an opinion about the patch yet. It is standard treatment for motion sickness, and though I am sensitive to motion, it's always been in a different way than most people. I don't know why we didn't try it earlier.
If I have time later,I'll review the "Neurogenic Bladder" article and see if I can answer the issue. There are so many different nerve imputs (voluntary, involutary and autonomic) that I'm not sure if rules can be established. They work in synergy and dysfunction of one signal can disrupt in different ways.
I'd like to give you an email address if you ever want totalk privately. I feel perfectly anonymous here, but sometimes private is better.
Talk later, quix
I am glad to hear you like your new PCP and he is willing to work with you. Sometimes when a doctor sees the whole family (you said he sees your mother and father) it is a good thing; they get a better sense of who you are, your background, etc.
Thank you for your email address--I appreciate the offer. I can tell you enjoy being on this board because you are helping people and sharing your knowledge, but if you think it would be better doing it privately I am fine with that, too. I will just use an email address I never use and we can both maintain our anonymity. I still haven't even had time to read those last articles yet. (I've had a lot to do the past couple days and this weekend have to bake/prepare food, as we're going up to my parents' for Father's Day), so I am kind of worn out, but I will get around to it in the next few days and will e-mail you then. I do not want you, however, to feel compelled to answer me right away or even feel compelled to respond at all if you are not feeling well, are too fatigued, etc., as I do not want in any way to make things more difficult for you. I know what it is like to fluctuate with regards to symptoms and energy level, etc., so I don't want to place that added stress on you. But I'll talk to you later. Take care.