I was misdiagnosed in August 1999 by a neurologist who was not an M.S. expert after having my first major attack at the age of 47 in June 1999. He diagnosed me with two herniated discs in my neck after two MRI's and called me at 8 PM one evening, stating I needed "immediate neurosurgery and be careful not to fall as one of his patients became a quadriplegic." Four days later I was under the knife, two discectomies, bone fusions from cadavers, and a titanium plate and screws to hold my spinal cord/neck together. The following May 2000 I had my second M.S. attack, went to the ER of the same HMO, they called my neurosurgeon and he thought it may be a ruptured disc below the ones that he replaced. A month later I was under the knife again and a third discectomy. Three months later I was experiencing pain everywhere. My primary care physician (HMO) said it was Fibromyalgia and move to a hot dry climate. I lived in Sonoma County California and moved to Palm Springs. I moved there in December of 2000, had another attack in January 2001, another attack in June of 2001, and a really major attack in June 2002. For a year I was seeing a world renowned neurologist who ruled out all of the M.S. mimics and said it was definitely M.S., get out of Palm Springs due to the heat. From there I moved to San Diego, saw a so-called M.S. notable expert at UCSD and that neurologist saw me in remission and diagnosed me with secondary symptoms due to the original herniated discs. In other words, a very incompetent published neurologist. I moved to Hawaii in 2006 and I just recently began seeing a wonderful M.S. neurologist here who has significant experience from the mainland. He couldn't believe the level of incompetence of doctors that I've been through especially since I'm the FIFTH MEMBER OF MY FAMILY TO COME DOWN WITH MULTIPLE SCLEROSIS. Fortunately my cousin (female-same age as me) and I have RRMS (relapsing-remitting). My other family members (deceased) all had Progressive M.S. My cousin and I had our first major attacks the same year and we're three weeks apart in age. THE BOTTOM LINE IS: find an M.S. specialist that uses a CLINICAL DIAGNOSIS and DOES NOT RELY ON MRI'S to rule out M.S. True experts as well as all of the research that I've done, and I've done tons of it, all stipulate that a clinical diagnosis takes precedence over an MRI. Lesions can be so microscopic that they don't show up on MRI's and that's the problem. In addition, be sure they using the latest standard for diagnosing M.S. which is the McDonald Criteria Diagnostic Criteria for Multiple Sclerosis. What it clearly states is that if after the first major attack there are at least nine lesions found on an MRI, then M.S. should be the diagnosis. After two or more M.S. attacks then a Clinical Diagnosis should be made. Apparently many of these so-called M.S. neurologists are not aware of this or forgot it. But my neck is sore almost daily from two unnecessary surgeries. I've reflected on my entire life and figured out those minor ruptured discs occurred when I was ten years old and when a heavy metal screen protecting a stain glass window in the church schoolyard fell straight down on top of my head, causing a minor concussion. Since the age of ten, I was extremely athletic and as an adult, snow skied, wind-surfed, ran three times per week, roller bladed, etc. I never had any serious injuries from those activities. And my first major attack happened while I was walking my dog. What caused it was an enormous amount of stress that I had been dealing with for the past two years. In summary, if you haven't had a major M.S. attack yet, you need to monitor your symptoms, avoid stress, and be sure to find a qualified neurologist that uses a CLINICAL DIAGNOSIS and does not rely on MRI's other than additional tools to help in the diagnostic process. I hope this information is very helpful to you and others. -Dave in Honolulu, Hawaii Addendum 3/14/09: I forgot to mention that my M.S. symptoms began at age 19 with neural hearing loss. From 19 through my 40's I gradually had many of the common symptoms leading to a first major M.S. attack. I thought this might be helpful to those that read my complete profile. -Sending Aloha from Hawaii Addendum 3/18/09: I thought I'd add the following from a posting reply on a topic I actually started, my first one, entitled "Does MS really suck?" What follows tells more about me and I decided to share it: BEGIN: Dear MS/DS teammates: I had a chance to watch Oprah yesterday with Montel Williams and I was expecting it to focus primarily on MS; it didn't. However, it really had a different theme and message. I posted the following thread on the "Montel Williams on Oprah" topic: "Initially I was disappointed with Oprah's show because it really didn't focus on MS. What it did focus on, in my opinion, was how seriously ill people deal with it on a daily basis. I think my point is evident by the number of other celebrities being interviewed about their respective diseases and how they cope, get support from their families, etc. Consequently, in that light, it was inspirational and enlightening, but nothing new about MS except Montel's personal story and how he copes. What I recommend to readers of this topic is to take a look at another topic "Does MS really suck?" I started that, shared my outlook on dealing with it, and what he and the other celebrities shared with their personal ways of dealing with their specific illnesses, resonated with me on how I deal with it, since I started that topic. I think between that show and the wonderful points of view that have been shared in the other topic, we can all come away with a lot to think about." The reason I'm sharing my posting thread is because I think it correlates significantly to all of the wonderful points of view shared by so many, and resonates with my personal story on how I cope MS on a daily basis. I also saw a few replies and received messages from some that talked about "young" people afflicted by MS and contracting MS at a young age. Many of us were diagnosed later in life and after enjoying a very long "normal" existence suddenly had to deal with the news, "You have MS." What I haven't shared either in my profile or with the group so far is that my MS is far worse than many of yours, I have to deal with at least 90% of the known symptoms. Fortunately, I only have RRMS (I think), it might be one of the sub-categories of RRMS, and since I'm entering my 10th year after the first major relapse, I have a 50% chance of going SP (Secondary Progressive). But I don't worry about it nor focus on it. Between relapses, I deal with very severe flare-ups and just move on. However, I've been dealing with the symptoms of MS since I was 19 years old, so I too was very young when the disease started taking away bits and pieces of my life to live normally. I joined the military when I was 18 and a year later, I was having trouble hearing others as well as receiving complaints from my sergeant and peers that they couldn't "hear" me when I spoke. I was sent for an auditory evaluation which turned came out normal. In MS terms, what I was dealing with was "neural hearing loss" and Dysarthria. Dysarthria affects the voice box, causing MS folks to speak extremely softly to the point of whispering. It took me time to conquer that one, but I never did. I would conscientiously try and avoid it, but kept slipping up even before my first major relapse in 1999. I did figure out a way to deal with the "neural hearing loss." So that you understand what that is since many may not, you hear voices but your brain can't process the words, you only hear sounds. But I'm a problem solver so I taught myself to read lips over the next few years and I can still do that today. Fortunately the last time I had a severe case of "neural hearing loss" was in 2003, and it lasted for the longest period that I can remember, at least a week. But I'm not complaining, I'll just read lips. However, the most inconvenient set of symptoms that manifested next when I was 20 years old were Detrusor Hyperreflexia and Detrusor External Sphincter Dyssynergia (DESD). Detrusor Hyperreflexia results in frequent urination or odd urination habits associated with bladder retention, like urinating for several minutes at a time. My ex-wife couldn't believe the latter one. Detrusor External Sphincter Dyssynergia (DESD) is the technical term for us MS folks that have to spend an hour or more daily at a time defecating because we never feel we're finished. I'm sure some of you deal with that. That was the "biggie" symptom for me that impacted my social life more than anything else. I cannot tell you how many times I was ridiculed about my "bathroom habits" by friends. I used to be an avid skier in the winter, sharing a rental house with other couples, and I'd have to schedule my bathroom time requirements so that I didn't impact their desire to get on the slopes. I didn't mine doing that, but I was always horribly embarrassed that it was an issue. Now for work, I'd have to get up three hours early before leaving, just to make sure I'd have enough time to "take care of business" and be able to leave so as not to be late. Not a very pleasant way to live one's life, but I did it all of my adult working life. Again, I had a problem, found a solution (get up early), and dealt with it. On these two specific problems I think I've finally found help. I'm a service connected disabled veteran and I'm fortunate enough to be able to use the V.A. besides my own private insurance. I live in Honolulu and have found this V.A. is better than most private hospitals and facilities, and have better doctors than I've ever experienced. In addition, our V.A. is connected to the Tripler Army Medical Center here which is absolutely stellar, the finest hospital and doctors I've also experienced to date. My Urologist, an U.S. Army Captain, put me on Detrol at the end of December. From my research, it takes Detrol a little time to kick in. Needless to say, the two annoying symptoms I'm discussing here have dramatically dissipated. So I doubt the problem is solved completely, but what an improvement. I no longer have to budget two hours a day for "library time" (sorry if this is TMI-too much information). Now on to the next "symptom." Severe headaches late twenties, early thirties. Next: optic neuritis-ON in 1984, age 32. Unfortunately my opthamologist didn't mention MS and I only knew about the main symptoms associated with MS. Since 1984, I get ON periodically and just deal with it. It's been isolated in my right eye, but last week the left one got it too. Next: depression. I started having bouts of depression about 5 years before my first major relapse which is another common indicator. That was my first journey with anti-depressants, Zoloft. Since my first major relapse in 1999, I eventually got the majority of the symptoms associated with MS but I won't bore you with the details, assuming I haven't bored you already with the post-reply. Which leads me back to my original posting topic and Oprah's show yesterday. I heard the same story from each of those celebrities dealing with a myriad of different serious illnesses. They turn to their faith in a Higher Power, do the research, are lucky enough to get a great deal of support from their loved ones, and attempt to accept their illness as a Gift from God and try and help others. The reason I found this so interesting and inspirational, is because that's exactly how I deal with it. In fact, in a private email a day before this show aired with a new friend I've made on DS, I shared my personal philosophy in more specifics which was almost identical to theirs. What I would add is that I believe MS has made me a better person, and inspired me to look for other ways to give back. Although my working career was mainly in Information Technology (computers etc.), my passion in life is writing. For the last several years, I've started several projects (books) and run into "writer's block." I did get a couple of short articles published locally, but that's about it. When my current relapse hit me in January, two things happened to me. I reconnected with my Spiritual side which I had been struggling with since 1994. The second thing that happened to me is that my "writer's block" had taken a "vacation." I was able to get back into working on two of my projects (books) that I want to finish this year. When it was challenging for me to use the computer over the last couple of months, I would just dictate my notes into my iPhone voice recorder application. I have tons of notes which are going to help me finish these projects. In addition, I now have the last chapter and section to one of those books that I started back in 2003. These two books are "self-help" books, and one of them is a system and a set of tools to help with one particular symptom most MS people share with others that have different neurological diseases. Other than that, I don't want to expand on either of these projects. My goal with both books is to help others, not to make money. I live frugally but I'm comfortable financially. Consequently, for me personally, MS has made me a better person and definitely made me more productive. And if what I end up producing and am successful in getting one or both published, help just one person, I'll be totally satisfied and feel fulfilled. What a great pleasure in life it is to give back to others by helping. And that's what all of you MS DS members have done for me so far. I thank all of you for sharing your diversity of view points to a topic that has inspired a lot of thought, including me. Sending Aloha from Honolulu. -Dave
I was misdiagnosed in August 1999 by a neurologist who was not an M.S. expert after having my first major attack at the age of 47 in June 1999. He diagnosed me with two herniated discs in my neck after two MRI's and called me at 8 PM one evening, stating I needed "immediate neurosurgery and be careful not to fall as one of his patients became a quadriplegic." Four days later I was under the knife, two discectomies, bone fusions from cadavers, and a titanium plate and screws to hold my spinal cord/neck
Writing, writing, writing. That's my passion in life. Also volunteering with the GLBT community when I'm up for it. I operate a virtual GLBT community center on the web so that keeps me busy as well. My other passion is playing Bridge on the computer. I've tried the internet Bridge games with others, but it gets too testy and stressful. Therefore it's more fun to play against the computer. I'm also a political junky but avoid the news and political shows when I'm not feeling well; too much stress and stress is the worse thing for M.S. besides heat.
Writing, writing, writing. That's my passion in life. Also volunteering with the GLBT community when
alohamsguy wrote a journal entry: My one month anniversary as an ex-smoker (now a non-smoker) 3:41pm
I read a great article a couple of months ago in Neuroscience about how smoking accelerates the progression…
alohamsguy gave dihenry a chocolate 3:09pm
Thx for the hug and I'm doing great. I finally quit smoking one month ago yesterday and feel terrific.…
November 12, 2009 3:41pm
I read a great article a couple of months ago in Neuroscience about how smoking accelerates the progression of M.S. Consequently that was the final …
October 12, 2009 4:58pm
I've been rather lax in journal entries; I just noticed my last one was in July. Health wise I'm doing rather well since my major relapse …
July 14, 2009 5:23pm
So far so good. I'm back to walking with a cane, out of my wheelchair as of mid-April, although there was a week or two of migrating with the …
June 10, 2009 2:44pm
I'm feeling great today but...
I thought this was a good starting line. Over the past two weeks I've received several Hugs and good …
May 31, 2009 12:44am
I'm truly grateful for all of the well wishers that added comments about my recovery from my relapse. You folks are my main friends and …
Congrats on quitting smoking Dave! I remember I smoked for a short time early in college and it was tough to quit... I can only imagine how tough it would be after all those years to quit so kudos to you.
Thanks... Things will look up I think I had my best two mental days the past two days despite my stomach issues... Things will improve.. They have to... I give it no other option... Life is too good to miss out on and I have too many things to accomplish before I die in 70plus years I got left... Ok so I dont know for sure whether its 70 plus years or not, but theres definitely too much out there to miss out on being cooped up sick in my apartment so therefore I give it no other option!
so aloha and take care of yourself from Iowa... Diane
hello how have you been!
Hi Aloha...OK...what happened in '01 that stopped a 22 yr old quit??? I will wake up every morning for the rest of my life saying my 'mantra'...Smoking is no longer an option..I'm a great listener and have been told my shoulder is comfy...Hang loose and keep NOPEing.
Hiya
You are doing great at your quit. I liked the 5 D,s too they really helped me
Hugsssssssssssss Deb
Aloha Aloha, we are a very close group in the Smoking recovery and I wanted to also extend a greeting and wish you loads of luck on your journey.We have much in common. I too had a spinal fusion after the neuro said "a rear end collision could paralize me" Scary stuff. I am also a mom of a 23 yr old Bipolar daughter.
hang tuff, it will get easier.
Hugs, Mayberry
Formally diagnosed with bipolar disorder in 2003, however after getting past the denial for two years, I realized that I've suffered from this since I was a small child. In my particular case, I just get severe anxiety attacks. I've never been manically depressed. I have had bouts of depression, but none lasting more than a week or two at the most. And for the past ten years, I associate the depression with my primary illness which is Multiple Sclerosis (M.S.).
My first major M.S. attack occurred in June 1999. It took four more attacks before they officially diagnosed me with M.S. I think I've now graduated to secondary-progressive M.S. not officially, just a suspicion based on symptoms. Hopefully, it'll be a very long time if I ever move on to progressive.
I just can't stop smoking yet, and it's only because of boredom!
