Thank you so very much for your reply. Even as I typed all of that I was thinking, good grief, that sounds ridiculous and I'm the one having the symptoms!
I did have a physical for my insurance at the beginning of the year and I was told everything was normal. No issues with blood sugar (although diabetes does run in my family) and my cholesterol was good. I am also within the appropriate weight range for my height and age.
I have always been an active person, and was determined even with my neck issues that I was going to stay fit and not let it get me down. I am really nervous about bringing up these symptoms because I recall when I told my PCP about my neck issues, he kept saying it was due to stress. It took an act of Congress to get a referral.
The pain management I receive is actually through a spine, joint and neuromuscular center. I really like the doctor I see there, yet I am still afraid of telling her all of this for fear of being considered a hypochondriac. Like I said, it sounds unbelievable even to me! I guess what I will do is tell her about these things when I see her next, unless something else very scary happens. I almost went to the ER when I had the #26 episode, but then once it was over I didn't see the point in going.
Thank you again for taking the time to respond, I really appreciate it!
you're welcome!
ask someone in your family to test you to the Romberg's test, it will take a minute. stand up straight looking forward , feet joined together toe to toe and your arms leaned forward palms up. then close your eyes, if you wobble, you can't stand still, there's something wrong. There are videos on Youtube to show how it's done!
let me know!
also if your last blood tests were 4-5 months ago preceding the symptoms you should repeat Complete Blood Count + ESR and liver function !
I also wanted to say that I realize that there are either people who are diagnosed or searching for answers here, not medical professionals. I wanted to post because I was wondering if anyone had symptoms similar to mine. Get info from the horse's mouth, if you will ;) The more I read, though, the more I realize how complex MS is. I am definitely going to tell my doctor what is going on with me. I probably should have said something a long time ago, but I am famous for the ostrich approach--bury your head in the sand until it goes away! Hey, it worked for a little while!
Thanks again,
Minnie
Thank you! I am getting ready to go to physical therapy, and will get look up the Romberg test. I'll let you all know what happens.
You guys are so nice, thank you for your messages and your responses here on the board!
I would make sure you get tested for your thyroid also.
Try L-argimine for the improved circulation. Try glutamine powder for pain. I think a lot of our problems are nutritional deficiencies, so take a multivitamin with minerals too, just in case you have a vitamin B deficiency or something.
We do believe you. I hope the docs aren't lazy with your case. I really think they insult people to make them take their tough cases away.
Thank you, I will definitely check into those supplements. I already take a women's multivitamin, Vitamin D and Calcium, Potassium, and Glucosamine and Chondroitin, and Omega 3.
Well, I didn't do so hot with the Romberg test. There were several variations and we tried a couple of them and I wobbled pretty bad, didn't fall through. I have a feeling I'm in for a long ride. I guess I will just take it as it comes, which is what I've been doing anyway.
Thanks again, everyone :)
Minnie
Oh, can I Identify with #25 - my husband and I had a habit of reaching overto the other while we are driving and touching each other's thigh with a tap. I got to the point before my diagnosis that I had to tell him to not touch me - talk about an awkward moment. It was painful and at times it still is.
One thing you don't mention is if you have seen a neurologist - sorry if I overlooked that. You should ask your PMD for the referral and have a neurological workup.
keep in touch,
Lulu
Hi Minnie,
I totally agree with Lulu. You definately should see a neurologist. You have already done the hard work of clearly detailing all of you symptoms. I would show the doctor this comprehensive list.
I wish you the best of luck. Keep us updated on how things turn out.
Good luck,
Deb
Hi, Lulu, I initially saw a neurologist who is with the spine and neuromuscular center back when I was diagnosed with the degenerating vertebrae, compressed disc and calcification in my neck. My PMD knows I am serious about following instructions regarding my treatment and I get along with her very well, so I don't know why I am so nervous about bringing up my symptoms. I guess part of it is because of how my PCP acted a few years ago. I am not even going to bother seeing him about it. Come to think about it, I don't know why he is even still my PCP. I guess because I only go to him if I am sick, and I don't get sick very often.
By reading here on this forum, I have learned that it is a good idea to document symptoms so I will have facts and timelines to present. I have had symptoms in the past but never really tracked them.
I guess a part of me is terrified that once I mention what has been going on, the wheels will be in motion. I don't mind MRIs much, yet the thought of a spinal tap scares the heck out of me. I have read that it is possible to get a diagnosis one way or another without one. Funny, I recall when I was expecting my now 26 year old daughter, I was more afraid of the IV than the actual labor (I had both of my children naturally). From what I've read on spinal taps, I would almost rather go through childbirth again! ;)
Wow, I am so glad I found you all. You are amazing and kind and I so appreciate it!
Minnie
Deb, shows how slow I am at posting from my phone, haha! Your post wasn't there when I began. I have copied and pasted my original post into a Word document and will add information as needed. Thank you very much for replying and I will definitely be on here reading and learning and keep everyone updated.
Thanks again,
Minnie
Lulu, I understand what you mean about telling your husband not to touch you! My poor DH was offended at first when this started happening because he thought I was recoiling from his touch. I had to explain that it is a reflex type thing and has nothing to do with my not wanting him to touch me. Not that I am wanting anyone to go through this, yet it is a bit reassuring to know that I'm not the only one who has had this happen.
Positive Romberg's test happens in different conditions that cause problems in the dorsal spinal cord or the brain.
B12 deficiency or problems in the spinal cord.
There aren't signs in you of severe B12 deficiency and the orthopedic problem your Neurologist diagnosed is not enough to explain the majority of your symptoms if not all.
As you know I'm not a Doc. but in my opinion the only way to explain all the symptoms 1-26 and positive Romberg's is some auto-immune syndrome, reaction!
I think you're right about spinal tap it isn't necessary so far. It is a crucial test I think only in case of direct infections of the central nervous system. In case of auto-immune it doesn't give definitive answers.
Last question, I believe: by chance were you given the vaccine shot recently and when?
Hi Gio,
Are you referring to the flu shot? If so, I haven't had one.
I believe deep down I know something isn't right and hasn't been for a while. In a joking way, my DH calls me Grace, and it doesn't refer to my Godliness ;) I have developed a reputation for being clumsy, and somehow I manage to bump into doorknobs a lot (I guess my hips are at the right height and I end up with bruises on them all the time). I joke a lot about getting old and forgetting things, trying to make light of it. In reality I don't consider 46 as old at all! Of course, when I was in my twenties I thought the forties were ancient. I suppose it is all relative.
Thank you for answering my posts and talking to me. I appreciate yours and everyone's responses and suggestions.
Minnie
well 46 year old is not meant to have memory issues or clumsiness. you figure our President of the Republic will turn 87 this year.
when exactly did these symptoms begin?
clumsiness
lack of short term memory and difficulty to concentrate
blurred vision
I would say all of those symptoms become more pronounced in the last year. Up until then, I would have isolated incidents that I would just shrug off. The clumsiness in particular is my longest lasting symptom, and I really don't know exactly when it started, but it has worsened in the last year, and now it is the worst it has ever been. The short-term memory started getting more noticeable about a couple of years ago and has gotten progressively worse and I have had a lot of those "blank" moments or fumbling for the right word moments in the last three or four months. In terms of vision, would notice little things here and there, like blurring or amoebas (what I call them) in my eye, or a flashing in my peripheral vision like the headlights of a car pulling into the driveway at night. These would last a while and then just go away. I have been noticing the blurring and eye-tiredness more in the last month.
alternative and more common terms for "amoebas" could be floaters, spots, flashers, flashes.
flashers in eyes sound more like neurological, floaters and spots can be due to eye-related issues.
Hi Gio,
Lol, I just called them amoebas because they remind me of looking at things through a microscope in biology class, but yes, those would be the floaters. The amoebas are different from the blurring. They just drift along, sometimes floating back and forth, other times floating from one side of my vision to the other, and sometimes they move in an up-and-down yet side-to-side pattern, kind of like the little blip in the old Atari "Pong"game. They are small. I will have periods of time when I get them a lot, then they just go away for a while.
The blurriness happens, for example, if I am reading and momentarily the words get fuzzy, or sometimes I will see two of the same line of text, or the same letters next to each other. Then, it rights itself after a few seconds.
Overall, I have been experiencing the flashes and blurries more often than the amoebas,
I have MANY of the same symptoms you do. My PCP blew me off and told me to "get a job" so I didn't focus on my symptoms. I felt so low that I was afraid to talk to anyone else about what was going on. I found another doctor, but was still nervous about talking to her about it. Six years later I had a flair that was impossible to ignore. Looking back, I wish I would have said something because I am left with symptoms that may very well be permanent. I met enough of the criteria that I only had an MRI following MS protocol for a positive diagnosis and not a spinal tap.
I had to laugh at #23 because I've never heard anyone else describe the tape feeling on your foot so perfectly! I can't tell you how many times I've checked my foot for tape.
Not being able to remember the names of things or enjoy my family's touch are the worst. My kids are all very touchy and sometimes it just hurts. It's hard when they touch my left side and I have to ask them to move to the right.
You have a good list of symptoms, so don't let fear stop you from seeking help. If your PCP won't listen, find a new one.
Best wishes and keep us informed!!
Chris
Ugh, your PCP sounds like mine. I mean, even if they can't figure it out, they should at least refer you. It took me over two years to get a referral from him for my neck stuff. According to him, my problem was "stress." I am not even going to tell him, I am going to talk to my PMD when I go back next month.
I am glad that you finally were diagnosed (not glad that you have MS, glad you have answers and can now deal with it) and it is encouraging that you were diagnosed without a spinal tap. I consider myself a pretty tough person but those things scare me to death!
Thank you for replying,
Minnie
Hi,
I am sorry to hear of your neurological problems.
I agree with Lulu (she is very knowledgeable). I think you need to make another appointment with your neurologist. I do not know if you have had a brain MRI or not, but sometimes even those are not conclusive.
I understand that you do have cervical spine problems, but some of the symptoms you describe sound more (brain/neurological in etiology).
Just as an example, I myself have been still awaiting my MS diagnosis. Per my neurologist, it can take sometimes over 10 years for some to be diagnosed and I am that example, for sure.
Best of luck....
terri
Hi Terri,
I have had a couple of MRIs done on my neck, but nothing of the brain.
I am discovering that diagnosis is very complex unless one is a "textbook" case, and at this point I'm not even sure exactly what that means. From what I understand, apparently lesions are supposed to be in the areas that are associated with the symptoms, yet I have also learned that there is so much we don't know about the brain and that a person can have MS and not have the lesions in those areas, but somewhere else, and even some don't have any visible lesions at all. Also, I have read that the Tesla 3 is better at detecting the lesions, yet the 1.5 is the one most commonly used, so it is possible that there are lesions that just aren't picked up. I will have to find out what type of MRI machine will be used when I get one.
I am leaning toward thinking I have MS the more I research, yet I realize there are mimics out there, so I guess they will have to rule out the other stuff first. And who knows, maybe I will have one of those other things. In many cases it appears it is more like a process of elimination than anything else. It has reached the point where now I need to at least begin the quest of finding out what it is, MS or not, Merely reporting the symptoms is only the beginning. I, too, may be one of those people who befuddles the doctors or doesn't fit any mold, and have to go through lots of tests and wait years before I am diagnosed. If ever.
Ah well, as they say, One day at a time.
Thank you,
Minnie
I am new to this forum thing and wanted you to know that I consider all of your answers as "best answers." I want to thank everyone for responding and messaging me. Regardless of what I end up being diagnosed with, it is very comforting knowing there are complete strangers who are willing to take the time to reply. I will continue to read and lurk here and let you all know how things go with my PMD.
Hugs and prayers,
Minnie
Please make sure that you ask for a Western Blot, an antibody test for Lyme Disease. Everything you describe could be caused by Lyme. Ithas a ridiculously long list of symptoms that it can cause, and it mimics many other diseases and disorders. Mine mimiced MS. I had many of the symptoms you describe.
Note: A negative blood test does not exclude Lyme Disease. Between 30-50% of Lyme patients test false negative on blood tests.
You are welcome to post on the Lyme Forum to get others' thoughts.
in the past few months I have been having almost all of your symptoms including the memory and concentration issues. For me I think it was some sort of "auto-immune" reaction that followed to an infection maybe viral, probably in September. I had no eye symptoms, not much balance issues, but the rest is all there including weak bladder.
The coordination problems you have when you walk I think is called Ataxia.
The strange sensations on your skin like electric and similar are called Paresthesia.
20. you say you are weak rather than debilitated that is probably due to a Myasthenic syndrome, the muscles aren't 100%.
26. don't know what that is, sounds like a MS specific symptom I read called "MS hug"
22. Bladder doesn't empty completely. This is sometimes due to infections or neurological problems
"Micturition Reflexes
Normal urination is completely dependent on neural pathways in the central nervous system. These pathways perform 3 major functions: amplification, coordination, and timing."
9. blurred vision and pain in the eyes that is probably due to something affecting the optical nerves. Ask someone to test you for the Romberg's test, look it up on Youtube to see how it's done, it's related with eye symptoms and auto-immune diseases.
Did you have blood tests recently?
was there anything out of range?
you should do Complete Blood Count, liver function and ESR at least for now then eventually see a Neurologist probably they'll have you do MRI Brain/Spine.