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MS Question
Hi Doctor. I have posted here before. Sx in September started 3 weeks after birth of third child, tingling in both feet/legs, back pain. MRI brain and entire spine, normal, all bloodwork normal, neuro exam normal. Sx resolved spontaneously after 4 weeks. November same sx returned, another normal neuro exam. Sx lasted 2 weeks. In the end of December, same sx returned, another normal neuro exam. Sx have now lasted 5 weeks with a progression to periods during the day where both ankles tingle and feel numb. (They are not actually numb, I still can feel pokes,etc.) Also, wrists feel numb and tingle, especially typing at the computer and sometimes carrying my baby. Ankles and wrists crack all the time now and sometimes ache. I was originally diagnosed with a "mild" TM (no inflammation or demyelination on MRI) and now my neuro believes this is some sort of benign process that will resolve eventually. I have had 2 brain MRIs and a spine MRI in 2000 (I had spontaneous intracranial hypotension, a bleed & a craniotomy.)and in last 5 months 2 MRIs, CT, 2 physicals, bloodwork and 5 neuro exams all normal. I have a follow up with the neuro in April, unless sx worsen.
Do these symptoms sound like the beginning of MS?
I've read in other posts that ten percent of MS cases present with a normal initial MRI. Do you have any idea how many cases where people have neuro symptoms and a normal MRI they do NOT go on to develop MS?
After approximately how many years of neuro symptoms with no MRI changes would you think about ruling out MS?
Thanks so much for your time.
Do these symptoms sound like the beginning of MS?
I've read in other posts that ten percent of MS cases present with a normal initial MRI. Do you have any idea how many cases where people have neuro symptoms and a normal MRI they do NOT go on to develop MS?
After approximately how many years of neuro symptoms with no MRI changes would you think about ruling out MS?
Thanks so much for your time.
Thank you Magnet - your positivity is infectious, bless you.
Annabel - Never give up hope! MS is not the killer; the potential side affects are! Whether you have received the positive diagnosis or not, live your life everyday believing you have MS and knowing that you are in the driver's seat. Positivity with your life is the way to survival. The advice about the MS Society is important. They have a view that is much more extensive than any view that an individual has. As far as someone being diagnosed at an older age, I questioned my care provider once about the fact that it seemed the older someone was when they got MS the more debilitating the disease was for them. He told me that they generally had been experiencing MS attacks for many years but the diagnosis came at a point in time when the disease was quite advanced. Again, never give up. Just like the woman whose boyfriend committed himself to her knowing the future was uncertain, acceptance can lead to success of the disease. My husband and I will celebrate our 11th anniversary next month. He married me know that someday he might have to put me in bed or give me a bath or even feed me. 11 years later none of this has happened and I firmly believe it is because of the will to not become a victim of MS. KEEP THE FAITH!!! Good luck.
You should look at the MS association websites. (Do a search for MS through Google or Yahoo) It might give you a better perspective. According to the FAQ on the National MS website, only 25% of people with MS end up in wheel chairs. Most people with MS live a normal lifespan as well. It might just make you feel a little more positive/less anxious if you had some additional information. I am sorry to hear that your friends MS is so serious and debilitating.
I love you're positivity, I can't help feeling that it is the search for the diagnosis which is the most debilitating and stressful part of all illness, once diagnosed we can decided what we will do, how we will live our lives, it can completely turn us around to live in the here and now the way we choose to because we now know there is something wrong, and had it confirmed, and are not left thinking we are nuts! I am still in the pit pre-diagnosis, but hope after my first MRI this week (Fri) that I will be on the road to finding out exactly what is wrong.
My friend with MS started with muscle spasms and weakness in the limbs, her eyesight suffered and her balance. It was still a lengthy business being diagnosed and I believe it was on only one MRI that, along with her other symptoms showed MS, as the MRI showed a problem with myelin. Over here in the UK we wait a long time to get an MRI, it was 2 years before she had hers, and I have waited a year and a half before being offered one, yet it will only be on the cervical area-not the brain, as they only seem to scan one particular area, that I find hard to understand, it seems more sensible to do as much as possible when they have the patient there, but they have to go by what the hospital doctor has asked for. We don't have any MRI scan machines in our hospitals here, and we are sent to a private hospital to have the MRI's done. This means I have to travel 200 miles to have this scan done.
My friend, like me started with shaking, she takes Parkinsons type drugs for her MS. I think the mistake at the beginning was to give her these high doses of Steroids, eventually she ended up with a perforated stomach, which was'nt immediately picked up by the nursing staff, when she complained in the hospital of pain, she was told by nursing staff that it was probably her period pains or something she'd eaten. It was'nt until her husband arrived that her pain was taken seriously and an operation to repair her stomach came about.
I have to tell you that my friend has an extremely bad case of MS, she has had to have a tube surgically attached to her stomach as she is unable to swallow liquids, and eats a soft diet very slowly, and has to be fed as she cannot control her arms and shakes perfusely. I have known others with MS who had a very slow MS with long good periods in between attacks, also many ladies who MS came about in later life. They all came to have to use a wheelchair at some point, one lady not until her 60's, my friend was in a wheelchair at the point of finally diagnoses. The amazing thing is that she was extremely athletic, she was a sportsperson and played at a semi-professional level, but I remember she always had muscular pain and was forever taking askit powders or other painkillers. I have often wondered if there was anything in the askit powders which may now have been proved to have been a nerve destroyer or could have been responsible or partially so for her MS. It was a daily occurence to see her taking these askit powders, it makes me wonder, especially in light of the controversy over people taking aspirin and ibuproven together and how they recently said that it causes heart problems.
Also, there has been some controversy over if MS is genetic, though my friend is the only person in her family to have it. Because she was struck done young and badly so early she could'nt have children when she married. She was living with her boyfriend when she eventually was diagnosed, with the diagnoses was the prognosis, she was told she would only have 5 years to live, this was 12 years ago, her boyfriend married her immediately because he believed the doctors assessment of her only having 5 years to live. He looks after her very well.
So, it just shows how being positive and having a caring person looking after you can achieve much.
My friend with MS started with muscle spasms and weakness in the limbs, her eyesight suffered and her balance. It was still a lengthy business being diagnosed and I believe it was on only one MRI that, along with her other symptoms showed MS, as the MRI showed a problem with myelin. Over here in the UK we wait a long time to get an MRI, it was 2 years before she had hers, and I have waited a year and a half before being offered one, yet it will only be on the cervical area-not the brain, as they only seem to scan one particular area, that I find hard to understand, it seems more sensible to do as much as possible when they have the patient there, but they have to go by what the hospital doctor has asked for. We don't have any MRI scan machines in our hospitals here, and we are sent to a private hospital to have the MRI's done. This means I have to travel 200 miles to have this scan done.
My friend, like me started with shaking, she takes Parkinsons type drugs for her MS. I think the mistake at the beginning was to give her these high doses of Steroids, eventually she ended up with a perforated stomach, which was'nt immediately picked up by the nursing staff, when she complained in the hospital of pain, she was told by nursing staff that it was probably her period pains or something she'd eaten. It was'nt until her husband arrived that her pain was taken seriously and an operation to repair her stomach came about.
I have to tell you that my friend has an extremely bad case of MS, she has had to have a tube surgically attached to her stomach as she is unable to swallow liquids, and eats a soft diet very slowly, and has to be fed as she cannot control her arms and shakes perfusely. I have known others with MS who had a very slow MS with long good periods in between attacks, also many ladies who MS came about in later life. They all came to have to use a wheelchair at some point, one lady not until her 60's, my friend was in a wheelchair at the point of finally diagnoses. The amazing thing is that she was extremely athletic, she was a sportsperson and played at a semi-professional level, but I remember she always had muscular pain and was forever taking askit powders or other painkillers. I have often wondered if there was anything in the askit powders which may now have been proved to have been a nerve destroyer or could have been responsible or partially so for her MS. It was a daily occurence to see her taking these askit powders, it makes me wonder, especially in light of the controversy over people taking aspirin and ibuproven together and how they recently said that it causes heart problems.
Also, there has been some controversy over if MS is genetic, though my friend is the only person in her family to have it. Because she was struck done young and badly so early she could'nt have children when she married. She was living with her boyfriend when she eventually was diagnosed, with the diagnoses was the prognosis, she was told she would only have 5 years to live, this was 12 years ago, her boyfriend married her immediately because he believed the doctors assessment of her only having 5 years to live. He looks after her very well.
So, it just shows how being positive and having a caring person looking after you can achieve much.
In March 1974 I experienced my first optic neuritis which subsided in @2 wks. In October 1979 I had my second occurance, this time last @1 month. A couple of years later was having some extreme pain in my right leg and buttocks. I had to have spinal surgery and the Neurosurgeon I had in CHeyenne, WY acknowledged the herniated disk as a problem, but he did not believe it was the true problem. He ran all the tests available at that time (CT Scan, Milogram, EMG, EEG, etc.) and came up with no positive diagnosis. At that time he told me that he believed I had MS and to live my life knowing that. Then in June 1984 I had the third occurance. Again I was hospitalized and provided every possible test. The Neurosurgeon I now had (Denver, CO) said he saw no signs of MS. However, once the nerve specialist looked at the EMG he came back and said the abnormalities were so consistent that he overlooked them and told me that he made an appointment at the Colorado Cancer Center to have a "Nuclear Magnetic Resonence Imagery" done. Needless to say, any of us who have had an MRI like that name better with the 'Nuclear' taken out!!! I called the Center and asked them what the test was for and they said it diagnosed Cancer, but it also identified MS plaque. That was much easier to take! The attack once again subsided, but I began have various symptoms (besides sight) generally on an annual basis. Spasticity and fatigue became an issue on an ongoing basis. Finally in 1989 I had an attack that provided the necessary data for an MRI. It's so strange ~ although I was totally prepared for the result, I fell apart immediately after hearing it. I rattled on for one reason. After 29 years with MS life is wonderful. I generally feel "GREAT" and occasionally feel "GOOD." There's no room in my vocabulary for "BAD" or "POOR" or "SICKLY." The Betaseron and now the Avonex have helped me sustain a quality life ~ that and the fact that STRESS is not allowed in my life. IF I CAN'T FIX IT I DON'T WORRY ABOUT IT!!! I hope you can believe me when I say that you can continue to enjoy life after MS. Probably the most convincing evidence I can provide is that my 25 year old daughter had her first bout with Optic Neuritis last June and the MRI showed appearnace of some plaque. When her friends and co-workers asked her about how she could handle the news that she potentially had MS she said it was no big deal~she'd lived around it for her entire life and knew that there is always hope when you continue to believe. My thoughts and prayers!
How did your friends symptoms 1st start? How did the doctors diagnose her w/ MS? Did it show up on an MRI with her first inital symptoms?
Hi - you seem so positive for one with MS, I was wondering if you could tell me how your symptoms started and developed. I have a friend with S, she was struck down with it in her 20's and went very quickly to a wheelchair, she has very bad shaking, like a pneumatic drill, they said they could operate to stop the shaking but it would mean she would'nt be able to make the normal movement she was still able to achieve. I take my hat off to her because I don't think I could be so strong. In the beginning she was put onto high dosage steroid, but taken off them too quickly, she then went totally into spasm, her whole body, the doctor came and gave her enough painkiller, morphine I think but not sure this was many years ago, enough to put a horse out he said, but she only slept for a short while and woke up in agony, she was taken to hospital where some stupid consultant told her that it was a reaction to sex and sexual abuse in childhood. How do these fathead consultants get away with these things. Unfortunately her consultant was on holiday but when he returned he had plenty to say to his jumped up consultant. I would like to say this was a one-off incident, however in my 20's I had a diarrhoea problem and went to see a doctor who told me I was abused in childhood and that was why I was having bowel problems, to make an evening appointment for psychotherapy. I went home wondering if this was all true, it took a friend to tell me it was all a lot of rot, I rang the surgery and cancelled and changed my doctors surgery. I wonder how many people are made to think they are crazy or have been abused, suppose it shifts there job away from having to provide good quality doctoring, sorry to sound angry but I often want to shout out 'we are human beings'. Well, I have my first MRI scan at the end of this week and looking forward to it, I have waited a long time to get this far, its a cervical scan, I was hoping they would do the brain while they were about it. Can they see myelin detachment on a cervical or is it the brain scan that shows it. I would refuse a lumbar puncture I don't see the point of putting people through that agony when there are other method as good for testing.
Thanks for the information. Wow, you've really given me something to worry about. However, I will say that my neurologist has been really great, patient and pretty thorough. It is actually much more likely given my symptoms and their distribution, etc. that it's a peripheral neuropathy. I've had several MRIs and lots of other tests and everything is normal. I'm also healthy and never fatigued, in spite of having three kids (4, 2 & 6 mos. old). So maybe I'm just trying to convince myself, but the doctors seem to think it's not MS. I guess time will tell. Glad to hear you've done well with your MS.
Just wanted you to know that I've had the electric shock sensation you mentioned (with bare feet) when I was first diagnosed with MS, 18 years ago. I have done very well in the interim time (still walking, etc) but I distinctly remember complaining of that same symptom. It particularly hurt when my foot would hit a cold floor (like tile) but it did resolve spontaneously, w/o the use of steroids. I went 12 years without an obvious relapse, although there were cognitive changes during that time along with the ever-present fatigue. I would hasten to say that this, on it's own, would not be enough for a definitive diagnosis but it helps to have all the information you can gather to present to your doctor. You may have heard from others that MS can be infamously hard to diagnose but keep after your doctor and if you don't feel you are getting his/her attention don't hesitate to look for someone who will give you the time you need and will take all these things into consideration. I should mention that my own diagnosis was pretty straight forward as I also had numbness, tingling, optic neuritis and positive evoked potentials. Good luck and keep your chin up.
Could be, but the persistently normal results of serial MRIs of the brain and spine as well as several neurological exams make MS a less likely possibility. As suggested in previous posts, a peripheral neuropathy is a consideration with the history of numbness and tingling in your hands and feet. An EMG or even evoked potential studies could be helpful in documenting objective nerve abnormalities. As for the percentage question, there are so many things that factor into it like what kind of neuro symptoms, the possibility of other neruological diseases, etc... that I'm afraid I couldn't give you an accurate answer.
Finally, there's no set time that I would use to say, "well it's been exactly this long and the MRIs are all normal, therefore you definitely don't have MS." Rather, it depends on the patient's symptoms and clinical picture. If the symptoms are vague and there's no objective evidence of neurological deficits on exam or by diagnostic testing, then it's unlikely to be MS. But if there's something like a history of optic neuritis, then we are more vigilant and follow the patient carefully with exams and MRIs as needed, even if everything's initially normal. Unfortunately, there's no test that says yes you absolutely have MS or no it's definitely not a possibility. The diagnosis depends on your history, exam and diagnostic testing. Good luck.
Finally, there's no set time that I would use to say, "well it's been exactly this long and the MRIs are all normal, therefore you definitely don't have MS." Rather, it depends on the patient's symptoms and clinical picture. If the symptoms are vague and there's no objective evidence of neurological deficits on exam or by diagnostic testing, then it's unlikely to be MS. But if there's something like a history of optic neuritis, then we are more vigilant and follow the patient carefully with exams and MRIs as needed, even if everything's initially normal. Unfortunately, there's no test that says yes you absolutely have MS or no it's definitely not a possibility. The diagnosis depends on your history, exam and diagnostic testing. Good luck.
I`ve had the exact same problems! We wrote each other before I think. They started after my daughter`s birth. Email me for comparison: t_anunson***@****
I forgot to include that I have an electric shock sensation in my right foot. This happens when my heel strikes the floor, a shock goes from my heel right to the end of my toes. It happens many times a day and only when I'm not wearing shoes. Also, my tingling, etc. occurs near and seems to worsen with menstrual cycles. Thanks for your time and advice, I'm trying not to drive you (or my neurologist) crazy, but it's hard not to worry.
I would also be interested in hearing about the last--I seem too have the same happen with a swelling in my low back and the normal not nice symptoms seem too get MUCH worse then. Good Luck in finding your answers--hope you feel better soon (((((HUGS)))))) eloridas
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