i am brand new to this community and am looking for some answers. i tried to post under the doctor's forum but could not find a way to post a new question. after looking at other forums, i thought maybe the limit on new questions had been asked for the day.
i have rsd/crps. it seems like every so often i have to get hit with some new problems that are sometimes related to that, and sometimes not. my rsd is severe and in a majority of my body. i have been in a wheelchair for 13 years now.
in september of this year, i was shopping and suddenly had very severe spasms/tremors in my hands and arms and i could not control or calm them. at the same time, my mouth and tongue got totally numb. i also broke out in a sweat. i do not have diabeties but i did think maybe this was low blood sugar. i got a bag of very sugary candy and left to go home. the symptoms did not abate. when i got home, i called my doctor and went in to see her. my glucose level was low so she sent me to get a meter and to monitor my sugar levels for two weeks. the following day it dropped to 43. at that point she put me on mega high doses of prednesone to try to raise it (i have since found out this is not protocol for low blood sugar). at the end of two weeks, based solely on glucose readings she diagnoses hypogloscemia.
i was continuing to have these episodes so when i went to see my rsd doc, i told him and he has referred me to an endocrinolgist. i had a 24 hour fast test which was pretty inconclusive. he is considering an inpatient 72 hour fast to try to help diagnose. he has been called out of town and i can not talk to him, so i have not been able to tell him about a new symptom.
i have no taste sensation. i can not taste anything. it is like my ability to taste has totally disappeared. nothing tastes like anything and this has caused a loss of appetite.
in trying to research all of my symptoms, MS kept coming up when i put them all in. in addition, i found that dry eyes are also a symptom and mine are so dry that in the mornings it is painful to open my eyes.
also, in recent months, when i am at rest, if i bend my legs, arms or fingers, they will go completely numb. it is the old...fell asleep feeling, but they are so numb i can not move them. when my arms do that, i can not even lift them. i have to try to get the affected area straight and wait anywhere from 5-15 minutes before i can move them. this happens to my legs every time i sit on a hard surface as well. i had thought this was just circulation problems related to rsd prior to my recent research, but now i am not so sure.
i am also noticing that i do have the lip/tongue numbness, shaking hands and breaking out into a sweat when my sugar levels drop under 75 and lower; however, i am also having them when my sugar levels are higher into the normal range. my local doc told me not to let my levels drop below 80 but the endocrinologist says 70's are normal levels. i dont know but i do have problems when mine nears 70.
about 10 years or so ago, i was having some symptoms that could indicate MS and went for an mri. at that time there were no lesions so that was ruled out, much to my relief. i was wondering if i could test negative for lesions 10 years ago but they could show up now? could lesions develop now or would they have been present then and once MS is ruled out there is no need for further testing?
i am supposed to have a spinal cord stimulator implanted in january and once they do that i can never have an mri again, unless i go into surgery to have it removed. if i am going to need a diagnostic mri, i need to go ahead and have that done before i go in for that implantation. also, my pain management specialist does not want to take me into surgery until these latest symptoms have been diagnosed.
in my research, every time i put in my symptoms, MS popped up. of course, a lot of other things popped up too, but because i had had the previous MS concerns and mri, it made me anxious as to whether that could be the problem or not.
i would be interested to know how many people here share the problems i have mentioned so i can try to have some knowledge before i speak to the doctor. i do not know if these problems are really symptomatic of MS or if in researching on the net, i had enough symptoms to make MS continuiously come to light, and that in reality, i do not really have enough of the symptoms to point to that diagnosis as a possibility. specifically does anyone suffer from low blood sugar in connection with the MS, as well as the other problems i have mentioned.
so far, i have seen 4 doctors trying to get a diagnosis and because i have rsd, they tend to want to connect it to that. not everything can be a complication of rsd. to be fair, the endocrinologist is trying to be very thorough in ruling out everything else before we revert to rsd. i just want to have enough knowledge to ask sensible questions when i am able to talk to him.
i would appreciate any information anyone could share with me. thank you so much.
Welcome to this MS forum. I hope we will be of some help to you.
for everyone else out there that may be wondering like I was - rsd is reflex sympathetic dystrophy. I was totally unfamiliar with this rare disease. Just google rsd disease and pick one of the links to read.
You have a lot of questions/thoughts in your post, so I will tackle a few of them and hopefully someone else can help with the others.
when you had your MRI ten years ago, you didn't necessarily not have lesions - we just may not have had the right equipment/software imaging to see any possible lesions . The technology has changed quite a bit and is more sophisticated.
Because this may be the last MRI you can have, I would definitely go have another MRI series done - this time perhaps on a 3T machine, with MS protocol. I would also ask to have the spine and the brain imaged.
MS can never be truly ruled out - the odds grow bigger, but there is always the possibility that you have this disease and the doctors haven't spotted it yet. there are many people here on this forum that were ill for years and it took the doctors a longtime to find convincing evidence of MS.
I had heard that medtronics was applying for FDA approval of MRI imaging of some of their spinal neuro implant devices. It might be possible to get an MRI after you get the stimulator implanted if medtronics gets the approval. But that doesn't solve your dilemma at the present time.
I have to run - but I hope this gets the conversation started here for you. You didn't say - is one of the doctors seeing you a neurologist who specializes in MS? I would definitely see one.
I can't say for sure just yet that I have MS but I've definitely dealt with hypoglycemia for years. It started around 1990 after I had my first bout of undiagnosable symptoms.
I had the 72 hour fast test where they checked blood sugars and blood insulin levels every four hours. The insulin levels were fine, so no insulinoma. My sugars were down in the 40-50 range during much of the test but I had few symptoms then.
I seem to feel the symptoms most when my sugar drops rapidly from a post meal high. It often gets worse when I'm under stress (doesn't everything). The endocrine doc finally did a study where I ate and drank radioactive eggs and OJ to see how fast my stomach emptied. They discovered that liquids pass through my stomach very rapidly so I was advised to drink very few fluids at meals so the emptying time would be lowered. That has helped quite a bit but my sugar still drips randomly sometimes. Of course, finding this problem brought any further investigation of MS to a grinding hault. After all, they had a documented answer to my problems. Right? (not so much as they thought)
I have no idea if there is any connection between MS potential and hypoglycemia. For me though, it has been acting up again with my latest batch of symptoms which are leading me down the 'Is-this-MS?' diagnostic path once again.
There have been several questions posted lately that attempt to make a connection between gastric difficulties and MS. It's hard to tell. It is certainly possible to have more than one condition or disease appearing at the same time.
Hi, and welcome to the forum. Just like you I am uncomfortable calling RSD/CRPS the primary disease here that is "causing" all this other stuff. In my reading RSD either stands alone or is secondary to another process. We have found studies showing that CRPS occurs more often in MS than in the general population.
The nerves that handle the secretion of insulin are part of the autonomic nervous system. So is the emptying of the stomach. Problems like this are called Dysautonomia and you might look into that. More and more we are discovering that those of us with MS have problems with autonomic functions. Most of our neurologists tell us that it is unrelated. In fact, RSD, as you know, stand for Reflex Sympathetic Dystrophy. The Sympathetic Nervous System is a major part of the Autonomic Nervous System, so RSD/CRPS is a kind of dysautonomia also.
I would recommend, like Lulu, that you get the highest quality MRIs of your brain and entire spinal cord done before they put in the spinal implant. Also, I wonder if they could sample the CSF to look for banding as they do the procedure - or have that done before.
It sounds like your regular doctor is kind of "winging it" to help with these problems. I am in agreement with your pain management doc that you need a thorough eval for these new problems before going to surgery. I don't know if this is MS, if so it is way out in the very atypical range. this is one of the few times that I would recommend that you go to a palce like the Mayo Clinic or a large academic center near year. Ask your pain doc for recommendations for evaluation of dysautonomia.
Especially you would want to know if you have any problems with the rhythm of your heart, your blood pressure, and your temperature regulation before you had anesthesia. Anknown problems with any of these can cause serious or fatal reactions during general anesthesia.
Now, I have a question for you. I am believed to have RSD without pain in my right leg. (the lower leg and foot is cold, purple and mottled and cool or cold. It is swollen to the knee, but on the foot it is swollen only on top). I can have severe pain if the toes are bumped in just the right way. I also have a growing bone spur that is limited my stride, and the doctors want to repair it to help me walk better. I am worried that a surgical procedure might unleash the last symptom of RSD that I don't have - pain. Do you know if this is likely?
I realize that this is a piddly problem complared to the agony that you have, but I would appreciate your experience.
I hope we can help you - we definitely be your friends.
nice to meet you and thank you for your thoughts on my situation. i have had a spinal mri a few weeks ago as part of the spinal cord stimulator evaluation. i have not had one of the brain recently. thankfully, i do receive care at a academic hospital but as i am sure everyone on this forum knows, every doctor has his specialty and so you go through one doc and on to another and on to another until you finaly find one who pinpoints something in their area of expertise. my rsd doc referred me to the endocrinologist because of the blood sugar problem, but as i have researched my symptoms, there seems to be something more than just glucose irregularities.
when my doctor suspected ms years ago, he did tell me that he had several patients with both rsd and ms. so i knew there was some sort of link between the two in some patients.
i was supposed to speak with the endo this week but he never called, so i am going to try to speak to him again on monday. i want to mention these other symptoms to him to get his opinion and suggestions.
as far as your rsd, i have had my rsd for 13 years and have met quite a few people with it, and i have yet to meet anyone who does not have severe pain with it. that is not to say you have a wrong diagnosis, just that you are the first person i have met with rsd and no pain. all of your other symptoms are very much indicative of rsd.
you are entirely right in your anxiety over having surgery for the bone spur. surgery and rsd do not mix. there is an extremely high risk in patients with rsd having surgery because the percentage of the disease showing up in the surgical sight is very high. i would say there is a great risk of surgery initiating the pain of rsd. of course, i am not a doctor, but in my experience, both personally and with others i know with rsd, this is more likely to happen than not. it is not a given that it will definitely bring on the pain associated with rsd, but there is a high risk.
however, there does come a time when due to health or pain, a surgery has to be done regardless of that risk. if your pain or health is to a point where you absolutely have to have surgery, you need to talk to your doc about doing a nerve block during and immediately following surgery.
i have been hospitalized 18 times in the last 13 years and every time, regardless of the reason if there is any sort of evasive procedure or surgery, i have had a nerve block. there are several types and they always put in either an continuous epidural or a newer type where they put in a catheter and the block is aimed directly to the surgical sight. three times i have come home with one of those type wearing a pump to keep the meds directed to the sight to keep the block going post surgically.
since i am not a medical person, the only way i can explain the reason for the blocks is in the laymans terms my doc explained them to me. the purpose of the block is to try to "trick" your body into not knowing that surgery has occurred. the hope is to block the area during the initial trauma of surgery so that the rsd gets fooled and doesnt realize your body has suffered any sort of injury...which is what rsd recognizes surgery as in the body.
these blocks are successful with some with rsd, but unfortunately for me, they have not served their purpose and i have developed rsd post surgically in areas that i did not have it prior. for this reason, my doctors never allow any surgery that is not absolutely necessary.
unfortunately, there is not a lot known about rsd. no one knows why some get it and others do not, what the cause is, other than a trauma, and there is no definitive treatment and no cure. with so many unknowns, it is very difficult to try to foresee what the outcome will be for any type of surgery or procedure.
i do not want to discourage you in any way, or cause you any more anxiety or worry than i am sure you are already experiencing; however, if you need this surgery, i want you to have as much information as possible. to be well informed before surgery and talking to your doctor regarding nerve blocks with rsd, is to your advantage. hopefully the doctor who treats you for the rsd is also the one who would so the surgery for the spur? if not, then the surgeon definitely should conference with the rsd doctor and get his opinions and suggestions for the safest possible manner of performing your surgery.
thank you for your suggestions for my situation. if i can answer any more questions about rsd or surgery, from my personal experience, i would be more than happy to do so. i always feel like, if i can offer some support or help to someone else who is battling rsd, then my situation is not entirely in vain.
thank you for your thoughts. it is interesting to me to hear about gastric difficulties and ms. i have very severe GERD and i had to have a nisson flundoplacation done a few years ago, along with a hiatal hernia repair. the nisson has come undone and the hernia has returned as well. i have such gastric problems that i have to severely restrict my diet along with taking nexeum twice a day. i have also developed an ulcer due to the reflux. so you have given me more information that shows even more symptoms for my situation.
i wish you the best as you strive to find a diagonosis. i hope you can get that quickly so you can begin treatment for the ms, or whatever it turns out to be causing your symptoms.
thank you for your comments. i am going to take all of the information i am gathering here from each of you and present them to my doc and ask for his opinion and suggestions. i have friends with ms..believe it or not, she was diagnosed and about 10 years later, her husband was diagnosed with ms as well. both of them had a devil of a time getting a diagnosis. she was told her was psychosymatic and he was told he had had a stroke. so, i am familiar with the problems of diagnosing ms and that is one reason i am trying to be proactive in my own research and not rely soley on what the doctors think.
thank you again for your thoughts and for the bump!
Thank you so much for your thoughts on the RDS. I agree that the lack of pain in what is known to be a "Pain" syndrome is weird. But, I have had multiple doctors who have treated RSD tell me the limb is identical to what they have seen. The condition did start with a severe stubbing of my toe that fractured it. I can only think that, because I have MS, and the sensation in that limb is decreased overall - maybe, somehow, this has blocked out the chronic pain that is so characteristic of the condition. And I do have the short spurts of unbelieveable, white-hot pain with slight trauma (ie. stubbing my toes). MS does weird things.
Perhaps RSD is the wrong thing to call it, but none of these docs had a better explanation. That is why they called it RSD and not CRPS. I, myself, am a physician, and I understand the oddness of it.
Thank you for your thoughts about surgery and your description about fooling the body into not know that the surgery was done makes TOTAL sense, from a pain "gate theory" standpoint.
I think I will just continue to lunge and lurch and leave the bone spur alone. I may just have to have special shoes made.
to those of you who were kind enough to answer my post and try to help me make sense of my symptoms, i wanted to let you know that i spoke with my doc today. he doesnt feel it is hypoglocemia now and he does think that i have more symptoms of ms than anything else. he says what i have told him points to ms, but of course, there have to be tests tests tests. he has made a referal to a neurologist but the first available appointment is march 22. seems like a long time to wait in limbo but he said that was the fastest appointment he could get.
he says he does not like mri's for diagnosis of ms, but prefers a spinal tap which he explained what they would be looking for and since i had no idea what any of the words meant, i can not explain what they are searching to find. i am sure those of you here will know anyway. i havent had to have a spinal tap before so this will be something new for me.
he said there is only one endocrine problem that would give similar symptoms and that is an adrenal tumor. he says they are rare but he feels he should rule it out before he lets me go on to another doc because if it were to be there we wouldnt want to miss it. for that, you take a 24 hour urine test and if you have that type of tumor, there will be certain components in your urine to point to that diagnosis. he is strongly feeling that it is not an adrenal tumor so that is a good thing.
unfortunately, he did think there is a strong possiblity it is going to ms, especially since it was suspected some years ago and not found. so i will have no answers at all for 3 months....wont that be fun to wait all that time??? lol
i hope to hang around here and read your posts and learn as much as i can so that i can have as much knowledge as possible when i finally see the neuro. i hope you guys dont mind that. i dont think i will have much to contribute back which i hate, but if anyone wants any information about rsd, maybe i can help in that way.
thank you to each one who took time to post back to me. i greatly appreciate it.
Hey, Spinky, that is interesting. So, the autonomic connection and the rsd connection are being made by your doc. Yes, I agree that a three month wait is very long for the US. Let's hope it is because the doc they want you to see is VERY good.
First - NEVER feel intimidated in explaining things to me! I hope I am always appraochable. Besides I was a general pediatrician, not a neurologist.
You clearly have a lot to offer us. Your extensive experience with pain and its treatment is priceless. You also have lived life and can offer all of those experiences. You are intelligent and write superbly well.
Well, now you belong to us. We have lots of info for you.
The tumor that your doc is looking for is probably Pheochromocytoma. That's a good thought and is fairly easily ruled out.
I am concerned about your doc's emphasis on the spinal tap findings. He is looking for the presence of things called Oligoclonal Banding. When these are found and there are 2 or more ones that are "unique to the CSF" (not appearing also in the serum) it points heavily toward MS. HOWEVER, if they are absent it does not rule out MS - contrary to the belief of many neurologists. About 5% or so of people with RRMS are negaive for O-Bands and about 40% of people with PPMS are negative for them.
We have an article we wrote up on O-Bands in the Health Pages:
thank you for all of the info. and for your kind words as they mean so much. i have been trying to read through it all, but it is a lot to absorb!
i have done some checking on the neuro i am to see in march and he is an MS specialist so i guess that is the reason for the long wait. i did call his office and request to be put on the cancellation list and my referring doctor already had me there.
as i have been researching ms, i am finding that i have ms symptoms that i did not even know pointed to this disease. i have been talking to my opthamologist for a couple of years now about seeing flashing lights and he did not know what to make of them. his theory was silent migraines since i do suffer from that type of headache. i found this to be an ms symtom in some of my reading.
i have also been so fatigued that i have had problems getting anything done. i had pnuemonia in june and have been like this since, so i attributed the fatigue to just taking a long time to recover.
in addition, i have been suffering from severe...SEVERE..back pain for 8 months to a year. i did have an mri in preparation for the spinal cord stimulator and the pain specialist says my mri is fine. no problems were reported at all.
according to all i can read, these can also be symptoms of ms? i was wondering if the spinal mri could be clear and there still be ms present? they did use contrast for the mri, but i do not know the strength rating of the mri machine. of course, when i had the mri, no one was looking for ms so maybe something could have been overlooked? that mri was about 6 weeks or so ago.
the spinal tap suggestion was made by the endocrinologist not the neuro, so when i see the ms specialist, he may not be as sold on the tap. i have no idea what to expect because once again, i am seeing a brand new doctor for a brand new suspicion.
i have also had one other bothersome symptom that i have not found but wonder if this could be indicative of ms or if it is just something else going on. when i am trying to speak or write, i dont seem to be able to find my words. for example, i could be asking do you know where the scissors are, and i can visualize scissors but i can not call the word to my lips. this happens all the time, several times a day. i am not on strong meds for the rsd because i refuse to take them, so i can not blame that on a medication side effect. i was wondering if anyone knows if this can be attributed to ms or if it is just my brain marching to its own beat. lol
i hate to ask so many questions, but at this point, i have no other resource to turn to for reliable information. i do appreciate anyone who takes time to write, and hopefully at some point, i might be more of a contributing member of this community. if anyone ever has questions regarding pain or pain management, then maybe i can give the benefit of my experience.
i have very severe GERD and i had to have a nisson flundoplacation done a few years ago, along with a hiatal hernia repair.
i have such gastric problems that i have to severely restrict my diet....
i have also developed an ulcer due to the reflux.
NO ULCER, BUT I HAVE DEVELOPED BARRETT'S ESOPHAGUS
i wish you the best as you strive to find a diagonosis. i hope you can get that quicklY
THANKS SPINKY AND BACK AT YA. I TOO AM WAITING FOR MY APPOINTMENT WITH THE MS SPECIALIST. IT WAS SET UP LAST MONTH AND THE EARLIEST AVAILABLE IS IN FEBRUARY. THEY SAY IT'S A TWO HOUR APPOINTMENT. WOW, NO MATTER WHATEVER HAPPENS, I SHOULD FEEL HEARD AFTER THAT.
Didn't mean to yell folks. Just wanted the questions and answers to show clearl
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