I had an interview with the regional coordinator for our local branch of the MS Society the other day (to sign up as a client and see what services I may have access to) and something he said has been bugging me ever since.
He seemed of the opinion that the reason my MS has been described as "not typical" is because almost all of my symptoms are sensory rather than motor. The only exception was a relapse recently that affected my leg for a few weeks, which has now resolved fully.
Is there anyone else that has had only the paraesthesias and pains rather than motor issues?
My dx isn't in question at all but I'm starting to feel like they're saying I don't have 'proper' MS because for me it's only a sensory thing.
There's something we often say round here and its "MS is a MySterious disease!" I dont quite get why "mainly" having sensory sx's, would fall under atypical, when no two people with MS are thought to be alike, so each have a unique combo of sx's.
I wonder if its got anything to do with sensory being more of a secondary sx and things like visual, motor etc are classed as primary sx's and its pretty typical for one of the primary sx's to precede or lead to the dx of MS, total guess though.
I wouldn't let it bug you, cause you're not going to be the only one with mainly sensory sx's and i'm sure your not going to be the last!
PS I saw a neurologist once who said "visual issues had nothing to do with MS" and yet visual is one of the most common sx, you'd think a neuro would know that but alas he was a tool. lol :o)
I have had MS for 47 years and still have mostly sensory or symptoms no one can see. I sometimes almost feel guilty saying I have MS but I do. Every MS is different. My MS Specialist only sees me every 16 months and just does a look see. I have some spasticty now going into my 48th year with MS but until now only my tests and double vision showed me to have MS.
It's definitely different for everyone. I have absolutely NO visual disturbances. (knock on wood) and in fact have 20/15 vision. Most of my symptoms are fatigue, tingling, etc. I do have some left side weakness, but I am really the only person who notices it. Sometimes I question if I even have MS. (Reading many of posts on the forum, I guess that's kind of common too.)
Wow!! you must have been reading my mind!! I have to go for my first MS protocol MRI tomorrow. (I have had many regular brain/cervical MRI's.) I was worried I was going to get thrown back into LIMBO-LAND because of my not "typical" MS symptoms!
I have been dx with PROBABLE MS/demyelinating disease. (By my MS specialist) So this MS protocol MRI should help with the dx..maybe...ANYWAY.. I was thinking..my "MS" symptoms are not like all the others I read on the forum...my symtoms are more sensory too.
You are the one who helped me with my leg/groin 'numb feeling' symptom..(the elastic stocking on leg feeling!) I have never had body part (except toes on my right foot) go completely NUMB. I have never had a body part paralyzed (THANK GOD)
My symptoms too...are mostly invisible to others....I just had 2 days of being a weeble....(you know...weebles wobble but they don't fall down....)
I CONSTANTLY drop things, balance issues, weird transient (lasting minutes or hours) buzzing, tingling, vibrating, shakiness, weak feelings, tripping over my own two feet, dizziness....feeling like something is crawling on my arm/leg ect....feelings like something is stuck on the bottom of my foot or between my toes, I can go on and on and ON! All mostly not lasting for long....AND LOTS and LOTS of Pain!
I notice after walking any length of time I start to limp slightly...always my left leg. I will concentrate and make my left leg walk normal only for it to happen again as soon as I am not 'thinking' about it...what is that???
I do have double vision ONLY looking left or right, up and to the sides...which makes driving scary sometimes when I have to change lanes. Sitting next to someone and trying to have a conversation is annoying! ;)
Loud noises and bright lights bother me...I have also lost my ability to filter out noises...(like when having a conversation in a 'noisy' room) It is very hard to understand what the person is saying even thought I hear them fine.
Of course I could go on forever....but again these are symptoms I only see and or feel. OH and the FATIGUE!! How can I forget that one!! lol!
Needless to say, I OFTEN wonder if I REALLY have MS. It is not that I WANT MS....but SOMETHING is causing these things to happen... ALL other tests and blood work has ruled out everything else....soooo...I am scared to be thrown back to limbo-land like so many others I have read on here.....
No offence, but it is nice to know someone else that has been dx with MS has the same "kind" of stuff going on!
I have a lot of the same types of symptoms. The scariest is my right arm and hand always being numb to a certain extent. It always feels like varying degrees of being "asleep." One morning I woke up and my entire right side was "asleep." I was gradually able to get up and go to work, butthe ffeeling was there again, in varying degrees on my whole side, for three days.
I am not diagnosed. I am being sent to an MS specialist by my nneurologist.
I have had MRIs of the brain, c and t spine. Two lesions in brain, anda ssuspected one in t-spine.
My vision went bad suddenly this past Summer, I was told by my neurologist to see an Ophthalmologist. She found that I have convergence insufficiency X (T) and refractive diplopia and recommended my neurologist evaluate me for Multiple Sclerosis and Myasthenia Gravis.
So, that's the (haha) short version of my story.
Other than the numbness in my right arm, vision issues, and stumbling over my own two feet (often veering to the right when I walk) and some pinpricks (or sometimes needle jabs) and of course fatigue, I guess I'm not doing horrible right now. Do have some stomach issues but they may or may not berrelated.
Did your neuro describe your MS as "not typical"? If so, what did (s)he mean? That would be good to know. Then you would be able to share specifically with the MS Society coordinator. BTW, where did the co-coordinator get the term?
Anyway, I would guess many people sign up for services only after they have significant motor disabilities - at least here in the states. I'm not sure how the services might differ in Australia. This rep should know about MS in it's totality but sometimes people only remember the faces of MS that they see most often - or those that are most visible. It's like the public believing that everyone with MS is (or will soon be) wheelchair bound. Seems so but NOT so.
Most of us entertain these types of doubts from time to time - especially if we encounter a group of people with MS who have more visible disabilities. We can even experience a degree of guilt that we included ourselves among people who are "really sick". Comparisons happen naturally. Just try not to linger with feelings that aren’t based on fact.
You are diagnosed with MS. You are fortunate to have limited symptoms today. No apologies needed for that!! In fact, please allow me to offer my congratulations as well as my hope that you continue without relapse for a very, very long time! (Really, the MS Society guy should have done that.)
You're doing a good job of self-advocating by investigating all areas of assistance that are available to you as a PwMS. You're a proper as the queen dear.
It boggles my mind how ignorant some neurologists are. Of course your mainly sensory symptoms are "normal". There IS no normal!! As was stated, the doctor says vision problems aren't usually MS. When often they are the FIRST sign. My ex-tool-of a neuro told me, when I asked about a couple weird cognitive things that had happened to me, said "no, that really couldn't be MS related." NOW he must have looked into it and is doing lectures on cognitive issues and MS. I'm tempted to tell him off at one of his lectures!
I only had tingling and numbness for years and years also. Twenty? Now it is up and over my lips - but also have major cognitive issues. Didn't really have too much trouble w/ fatigue until about year ago. Another invisible symptom. They are tough too - I'm always afraid people will think I'm "faking it".
So hang in there! You know yourself better than anyone else!
I'm not sure I recall MS symptoms being referred to as primary or secondary. Are you talking about sensory symptoms usually being subjective (felt by us and reported by us) while motor symptoms are more likely to be objective (observable by others, especially the physician)? Of course both are real and co-exist in many disease states.
Keep in mind this is the same thing as signs and symptoms.
Nausea is a symptom. It's subjective. Yet a doc usually believes a patient who reports it and prescribes treatment.
Vomiting is a sign. It's objective (and messy). Some docs might prefer this but the smartest ones know you don't always have to have everything.
Neuro make plenty of blunders that can't be defended but in all fairness Marcia, cognitive changes as a result of MS weren't really recognized until the last few years. Even now I wouldn't be surprised to hear of neuros who deny it occurs.
I'm actually surprised "primary and secondary" are not uncommon terms used by researchers or the MS organisations eg http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/index.aspx
"In multiple sclerosis , damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred.......
“Secondary” Symptoms of MS
While the primary symptoms described on this page are the direct result of damage to the myelin and nerve fibers in the CNS, the secondary symptoms are the complications that can arise as a result of the primary symptoms.
Bladder dysfunction can cause repeated urinary tract infections."
The above describes what they mean better than my brain can at the moment, oh and http://www.msfocus.org/article-details.aspx?articleID=343 is a good one to read because it gives a few examples of a primary sx vs secondary.
Boy do I feel so much better after reading all your responses. :)
Both of the neuro's I've seen have called my MS "atypical". The first one (who wasn't an MS specialist) said "it looks like MS, but it's all a bit atypical" and referred me to the second one, who is a MS specialist. The second one said "It doesn't look like MS to me" and "Well, it could be, but it's not typical" right up until she saw the big fat enhancing lesion that coincided with my recent relapse.
The way it works here is that once you have a diagnosis you get referred to the MS Society who show you how to use your medication, and then someone comes to your house to talk to you about how it affects your life and they fill out a huge questionnaire to get a baseline of where your MS is at and what services or info you might need now or in the future.
We talked about eating, mobility, bathing, working, driving etc etc etc and the whole time I'm going "No, that's all fine.... I just have numb and prickly bits" and told him my history of symptoms and that they were all paraesthesias of one kind or another until the relapse at Christmas. That was when the coordinator said it's probably why the neuro's kept saying it wasn't typical.
I've thought about it some more and now I think I know where he was coming from.
From what I've read, MS over here often presents first with optic neuritis or fatigue as the first symptoms, so maybe the fact that I noticed all the weird semi-numb bits, went to the doctor and was prepared to pay for MRI's over two years to find the cause, is what makes mine odd to them? Perhaps most people here don't bother going that far until they have more "concrete" symptoms so, although they might have a similar course to mine, it's not diagnosed this early?
I'm surely grateful (and yes, feeling just a little bit guilty) that so far the going has been easy for me. I am humbled by understanding you have all shown and hope that my friends and family can show even half the compassion I've seen in this community.
And one more thing.... Twopack, your comment "You're a proper as the queen dear" had me laughing my head off for AGES! I totally needed that laugh today. :)
Hmmm for the record :o) our system in Australia really ***** sometimes, we have so few dx MSers compare to other countries that statistically speaking, a lot of our general or none MS specialising neuro's, would hardly of seen a person with MS, let alone dx-ed someone with it.
Last time I checked we had around 23,000 in the entire country of over 23.8 million ( that's only 0.1%) and only 1000 per year are being dx-ed lol so I suspect a lot of our GP's probably dont even consider MS until after one or more of the big sx's are at play, only then referring them on.
ooooh oooh you could be onto something, maybe your atypical because our neuro's maybe wouldn't "typically" get to see a pwMS until after things like visual or motor issues have turned up, (which is kind of like shutting the barn door after the horse has bolted lol) you by passed the system and found it early.
ps I too laughed my head off, at the queen comment :o)
Now I understand where you were going JJ. I'm familiar with the terms but still don't think sensory symptoms are secondary - at least not in MS. Sensory symptoms that are a reflection of demyelination in the CNS are still primary symptoms of MS.
Footsie, you are no doubt right about the use of "atypical" to describe your MS. Docs here tend to tell a person like you that their case "isn't classic MS". You received a mixed blessing for sure when your symptoms and enhanced lesion coincided. At least you suffered minimal consequence to 'prove' your diagnosis. Many, many PwMS are never able to match lesions with symptoms.
Thanks for explaining how the MS Society works there. It is quite different than the charitable fund-raising and general educational organizations we have here. Ours do offer special services to PwMS but we often have to stumble upon those services on their own.
Sorry to say but I can't imagine the government wants it to be any easier to diagnose MS. After all, once a citizen is diagnosed the government gets the bill for a lifetime of treatment that is extremely expensive yet offers no cure. No government in the world wants to come right out and tell it's citizens there isn't enough money in the treasury to guarantee something as seemingly basic as good health in the prime of life.
Glad I gave you both a laugh earlier. Sadly, humor fails me at the moment.
I am not surprised by by your doctor calling your MS as atypical because most of these doctors are fairly ignorant! I too have been told my MS is atypical because my symptoms are all motor (left sided weakness, difficulty walking, left hand fine motor) and extreme fatigue but I have none of the "invisible" MS symptoms such as vision, speech, cognitive, sesory or memory problems (knock wood)
As we all know MS is truly the MYsterious disease because it presents itself in so many different forms.
However the demyelination of the CNS is the true common denominator for all of us with MS. Because this demyelination affects us all so differently, I am not really sure what is considered "typical" MS.
Laurie, how did you remember all of that? That was very good. Even when I am asked a question, I have to look it up even when it is about myself. All they have to do is ask me how I felt yesterday and I really have to think about it and then I am lucky to come up with the words.
Yes in MS sensory (paresthesia) would be a primary sx but at the same time it can also be secondary too, it can be both because its not always as clear, as some of the other main sx's of MS, like visual or motor.
I'll explain what I was thinking... Um ok think about the main visual issues - Optic Neuritis, Nystagmus and even Diplopia they are each on there own, separate diagnosable disorders/conditions with there own set of sx's and thought to be primary conditions that are also common indicators of neurological/central nervous system issues.
How ever, Paresthesia/sensory is not a diagnosable disorder/condition, it is a sx (an umbrella term for a set of sx's) and in the main it is thought to be secondary to.... something and that something could be many different things. So in general and even statistically, paresthesia isn't as strong an indicator of the causation being central nervous system (MS) when compared to the visual sx's.
ps these thoughts, just sparked a fun two hour debate with DS lol
I strongly disagree with supermum’s interpretation of the linked information but see no reason to continue this discussion about primary and secondary symptoms.
Footsie has told us she now understands why her neuro described her MS as atypical. She also clearly understands that the pairing of sensory symptoms with specific MRI findings gives her docs a solid basis for a valid MS diagnosis.
Anyone wanting clarification about what the National MS Society has to say about MS symptoms can review their website statements by using the URL supermum posted above.
I offer my sincere apologies for sidetracking this discussion.
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