I know about MS through my family. I'm not too sure Dr Google is the place to consult. Information from those who have been there should be more reliable.
I'm concerned that I may be experiencing very mild MS symptoms. Having just discovered some of my problems could be related to MS. I'm possibly over thinking the problem, combined with vague memory of previous events that at the time meant little.
I know it is rarer for males than females to contract MS.
Even rarer for two cases in the same immediate family, my elder sister and brother, both succumbed to MS.
I hope three in one family is above all odds, but know it is not impossible.
I will be raising my concern with my Dr if I can't find another reason for the symptom similarities.
Everybody is different. What initially sent me to the doctor was migraines which led to an MRI...then a spinal tap. I had tingling and some numbness in one hand but had it for so long I’d never thought much of it. I hope your doctor is able to give you answers but, truly, any one or more of the common MS symptoms...or even not common ones...can be the first sign for somebody. It truly is a crazy and varied illness. What are your symptoms?
Unrelenting migraines were also my most pronounced symptoms. I agree with Tinker-Belle , MS symptoms vary from person to person and also mimic many other diseases.
There are no reliable "first signs" for MS as every person's MS presentation will be slightly different. If you have concerns and you have other family members with confirmed MS then your first port of call should be your doctor - you are right to bypass Dr Google - there are always people posting here because their conversations with Dr Google have convinced them of a diagnosis which may well be completely incorrect. If you really need to consult the internet then the best place to to look would be at at information on recognised and reputable MS Society websites around the world.
If your symptoms are mild then keep a symptom diary for some weeks so that when you go to the doctor you have something substantial and evidence-based to back up your concerns - much better than only being able to make vague comments such as having had a few occasions of (say) weak legs and problems walking - far better to be able to say that on X, Y, and Z date you had difficulties walking and it lasted for A/B/C period of time and seemed to be triggered by P/Q/R.
Mine was vision issues. The eye Dr. said that the problem was not my eyes and sent me to a Neurologist where they gave me a MRI and a lumbar puncture and confirmed that it was MS. I think that vision issues are quite often the first signs - but not always.
For me it was occasionally missing a step. It felt like I was on stairs when walking on a flat surface. It slowly worsened to the point I knew, just new it was going to be big. Also, my late sister had PPMS . I never thought at age 57 I would be diagnosed with not only MS but PPMS.
I also presented with vision issues. What I first described as what seemed like floaters turned out to be Optic Neuritis which led to my diagnosis. That was in October 1995 and I was a young, unmarried, childless 22 year old with my whole life ahead of me. I had a birthday in July and turned 47. Now I have a son who is the same age I was at diagnosis. And I have a wonderful husband who I’ve been married to for 24 years (together total of 28 years). We were engaged when I was diagnosed. Our son will be 23 in January. Sorry to share my whole life story but I’m so blessed that I like to share about my family, and my MS diagnosis, whenever I can. I wish you the best of luck and I hope you’ll get some answers soon!
Very much like my sister, except she was hospitalised from her late 30's locked inside a body that no longer worked for 20 years. No medication back then. Interestingly it all turned to custard when her husband started beating her, she got worse quickly. Funnily enough that stopped when it was pointed out he would be subjected to the same medicine if it happened again! He did change, overnight, and stood by her for the rest of her life.
My brother was diagnosed in is late 40's and died within 5 years.
I realise MS is not fatal but the effects of MS can be instrumental. The brain gets to the point with MS that there is nothing left to fight for or with, in end stages. What I would call giving up the will to live but more likely the body just shutting down systematically until the brain can no longer function. It may well be different today with drugs available that weren't some years ago.
Both succumbed in the same manor. Unless my health changes that is how I will die as well, but from a very different cause. I'm ok with it but will fight until the end anyway, that's my nature.
I was always impressed with how her eyes were alive and you could see the frustration of not being able to move or talk. Pretty much the opposite to being a "vegetable". In her prime she was absolutely brilliant, tops academically followed closely by my brother and 2 younger remaining sisters. I'm the odd one out with all the mechanical, physical and dexterity abilities to design or fix anything. Except myself.
Not diagnosed yet and only became aware that my symptoms could be those of MS days ago. Hadn't really giving it much thought as possible MS. The chances of 3 in the immediate family would have to be extremely rare although not impossible. I'm thinking no and have my fingers crossed for no. I'm on a shortened life regardless, MS isn't going to make any difference to me, it would be nice to know what is causing these events.
I get bouts of blurred vision, memory loss, problems with hand eye coordination, problem controlling my fingers, sudden bouts of vertigo and tinnitus, balance issues, poor comprehension, difficulty starting to urinate then inability to stop, pain issues through the back of the waist in the shoulders down to my fingers, extreme migraine to the rear right side of the brain regularly. Not attributed to my high BP, BP always lower with the migraine. Nausea but this is likely the kidney disease I have. This has only been happening over the last 7 years since I met death for the second time and was turned back! First time as a child I was resuscitated. Made me feel bullet proof but not prepared to push it for a third time.
I have been tested for stroke, heart problems, scanned, lumbar punctured and xrayed but never with a view to MS and always came back negative. Prostate checked, diabetic and controlled by diet. CKD and on a kidney based diet, high BP, extreme
cholesterol and to top it all off IBS with an intolerance for oral medication. Only ever found osteoporosis in the fingers and one hip. I'm doing better this year than last but have since stopped refined and man made foods for a preference to natural fresh foods and only drink water and eat little red meat. There is no logic to what I do or don't remember. Recent or historic, all the same and only short term, thankfully. I had one occasion I could not remember what the letter J looked like and was not able to write it.
Unable to take pain killers, only opioids are applicable and I'm not to the point of mitigating kidney function for pain relief, yet.
I was poisoned in Detroit with PBB, polybrominated Bi-fennel, but don't believe that has any bearing on the current situation, I hope. Now back in New Zealand the mecca for MS. The risk factor for MS is greater for me in view of the statistics for MS contraction.
I monitor my heart, BP, exercise, sleep patterns and weight daily, have blood test 3 monthly all so I'm informed and not caught short. Constantly checking for any unexpected change. For the most part all is stable if no desirable.
Clearly your "MS-ey" symptoms are not so mild, but you have already been tested from NZ to Vanuatu and back again for a multitude of things. I'd suggest seeing your GP and discussing a referral to a neurologist to get any further relevant tests for possible MS (presumably your B12 has been checked as part of your ongoing cycle of blood tests). As you've spent time in the USA in the past - have you ever been tested for Lyme disease - it can cause a lot of symptoms similar to MS? You mention high cholesterol - there is a Cholesterol Support group on this board which has some interesting perspectives put forward on occasions.
Could also be worth checking out FODMAPS diet in relation to relieving some of your IBS issues - although with managing diabetes and CKD it might be a bit tricky to juggle all the competing food priorities.
Juggling CKD with Diabetes and IBS is almost impossible, I have had to do it alone and learn to cook my own dietary requirements. I don't expect my wife to cook 2 separate meals. I'm fortunate that going on a kidney friendly diet has lowered my cholesterol a little but it remains high, was 9.8 consistently, now 6.5. All medication for BP and Cholesterol have caused me reactive problems, so have been terminated.
I had thought my symptoms were mild, but then I have become accustomed to them and deal with them anyway I have to. Trouble is I become irritable, irrational and can be aggressive during these periods. Even I don't like being around me.
My diet is B12 rich so no worries there. D3 is the one that is low but I react to that medication as well.
I have to do my own research and then take the Dr to task to get what I believe should be happening for me. They are not proactive here, but all to willing to send the ambulance to the bottom of the cliff to meet you. Only the obvious cause is looked for and anything else goes undetected.
There is no clear reason for the kidney disease, it could be hereditary, it could be self induced or just dumb luck. My mother died in front of me with kidney failure. I managed to get through 18 hour of kidney failure until I crawled into hospital believing my blood sugars were screwed up. A rude shock to be rushed into ICU and being isolated. I was told and given a choice, they could try medicating me not knowing what was causing the kidney failure, which could work or kill me if they guessed wrong, alternately I could do nothing and I will die within the next few hours. I had the choice. Kind of wondered what part was the choice! That is when my health took a dive, left not being able to eat or drink with IBS. Being told I had to live with it was not an option. I was starving and lost a large amount of weight over the ensuing weeks. Seven years later I can eat one small meal per day and one bland sandwich for lunch, with many cups of water. The brain has been re-educated into not craving sugar or salt and I don't use manmade substitutes. I generally feel better for it and am making steady but slow progress.
Your diet may theoretically be rich in B12 but you note that you don't actually eat much and that what you do eat is limited by your IBS, so if it hasn't been checked recently that could be worth doing. Presumably, amongst all the myriad tests you've in the past had you've been checked for pernicious anaemia? It can cause a lot of MS-like symptoms. The risk of developing PA is increased with digestive problems such as Crohns et al and with diabetes. This is a reasonable plain language article from a reputable source.
If you have problems with taking D3 to keep your levels up - have you tried taking sublingual D3 instead of the usual oil filled "footballs"? Sublingual D3 is more tolerable for some people because it bypasses the digestive tract and is absorbed directly through the mucous membranes in your mouth. Another issue some people have with tolerating D3 is that they are taking it in isolation, and not getting enough of the other requirements that should accompany it - magnesium, Vit K2 and some trace elements such as selenium and boron. You appear to be a capable researcher who is not led up the garden paths of various bits of "fake medicine" - perhaps doing some investigation on these lines might shed some light for you.
I am recently diagnosed (5 months ago) and numbness in my right hand was the first symptom I had followed by significant balance issues. MRIs first with my GP and then my Neurologist led to my diagnosis. Not the news you want to hear from your doctors, but that also led to starting treatment. IV Steroids got rid of 90% of my balance issues and on Ocrevus after that. Feeling pretty good at this point, so I would say don't wait to see your Dr. I haven't posted a lot on here, but I find it so helpful to see what other have gone through and to help understand that the symptoms I have had are normal. Good luck!
Hello, I've heard over the years that some had experienced Vertigo. I remember complaining of those symptoms I would say 3 years prior getting diagnosed. I had never heard of Vertigo at the time until friends told me that it seemed to be what I was experiencing. 3 years later I experienced numbness in both feet and within a couple day rose to my legs and eventually up to my chest. This was through a duration of 2 weeks. I called my doctor who sent me to a neurologist who ordered an MRI. Which determined it was MS. While there are no people alike, early detection and therapy is important in my opinion. Usually a major stressful event is what may bring it into view. Mine was suffering a lose of a family member and grieving. Good luck and hope this was helpful.
My first attack of vertigo like all my attacks was sudden and long. I fell over at the Dr's and was given pills to stop the nausea and told to wait it out. Been living with it off and on ever since. No amount of manipulating the head has never eased the vertigo. I have had incidents caused by vertigo striking me randomly and suddenly. The most serious hit me when I was 8 foot up in the air atop a ladder, seconds to decide to jump or fall in the ladder. I jumped trying to protect vital organs and shattering my heel. Very lucky I had heavy rubber soles on which took a lot of the shock and saved my ankles as I tried to role hitting the concrete. I see the damage others have done jumping from shorter distances and really appreciate just how lucky I was to crawl away from it. Could have shattered the pelvic bone and damaged the spine.
I’ve had many first signs over the 15 years of being undiagnosed. When I was misdiagnosed, I had Lhermitte’s. When I was finally diagnosed I had optic neuritis.
When I had memory loss and syncope, my MD concluded that my diet and work schedule were to blame. Now I know it was only adding fuel to the MS fire, as it happened again later on with those things fixed. I hope you get worked up soon and find out what the problem is.
Trigeminal Neuralgia (Look it up) on the left side, go see a neuroligist and do not mention your siblings having ms as it may not be. Good luck and stop looking at dr google, he does lie to you. NmsS msAA is all you need to look at, go see a neuro
You have missed some very important facts. I stated I do not rely on Dr Google and my siblings did have MS. Let me be clear, diagnosed not imagined. This is why I don't believe everything I read!
It was not taken as anything but a miss read, I'm not immune to this either. No harm done.
Cheers
A lot of my symptoms can be accounted for with CKD but not all and why they come in swarms rather than being constantly present, eludes me. My vertigo is not your typical vertigo, which led me to start looking into why and how. I have always had MS in the back of my mind because of the family incidence and the heightened risk factor, but the realisation that it could be real has started a snowball effect, getting bigger by the turn.
There is no doubt that there have been reactions to medications mixed in along the way, but as they all were stopped earlier this year combined with a shift in dietary focus last year, time will tell if the symptoms are repeating. I have just been through another massive episode of vertigo which would suggest the status quo remains. But two symptoms, Tinnitus as well, of an arsenal of symptoms does not make it so. I wait to see what the next few months bring while researching the possibilities.
There has been some interesting input which leaves me with yet more research to be done. I thank you all and wish you well on your journeys. I can't stop until my questions are answered, it no my nature to leave anything half done.
Have you gotten an MRI or spinal tap? Because my symptoms were so strange, those were the only way to determine what was ACTUALLY happening to my body! It took UCLA a while before coming up with my diagnosis. Initially it was ADEMS (one time occurrence of symptoms but they go away) but proved not to be the case.
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