It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


MS? Please, not me!
Jul 31, 2011
Finally decided to post on here as my worries are becoming more real every day.

This year started with huge amounts of stress, car accident,(son) relative dying and car theft. It was during this period in January that i first developed Trigeminal Neuralgia on the lower left side of my face. OMG!!! I have never felt pain like it. My attacks lasted about 12 hours and a week apart. Then they became more frequent and lasted longer until they tailed off. During the same period i started getting bad sciatica. I already know that my lower spine had DDD. This sciatica has been unlike any other i have ever experienced. I hadn't had it for a couple of years so it was odd it just came back
Classic pain, aching, burning and shocks. Previously i have had the pain all the way to my ankle but never unbearable pain, more of an annoyance but what i am going through is not the same. I have been unable to walk for the last 6 weeks as the burning/gnawing/shock type pain in my hip and leg is agonising.

Initially i was on Tegretol for the face pain(TN) but it did nothing to stop my leg pain which literally got worse day by day. I was getting pricking pains in my lower legs and feet, like i had been stung or burnt. These lasted a second each time. My foot kept feeling like it was hot too. For a few days my legs kept going from under me. No warning and only briefly. It felt like i had clown legs. They would go all jelly like from the hips and i would gently fall to the floor. I didn't get dizzy or anything, just my legs going. Also this is when my thumb started twitching. I could see and feel the skin moving, jumping.

Sooo, now i had TN, sciatic type pain, hot foot, stabbing pains in lower legs, skin twitching and pins and needles in my leg, foot and lightly affecting my fingers on both hands.

Then my sciatica got bad! The pain in my hip, (front and back is) is like a fire with claws that rip my skin on the inside. I cannot stand for long as the pain stops me. The outside of my lower leg is numb as is the foot. Bit by bit it feels like the numbness is creeping up my body. I get horrendous pain in the outer ankle bone, almost feels like the bone is exposed for want of a better description. The numbness and tingling is spreading in my leg. My fingers have now started tingling but its not uncomfortable.

My sciatica has changed and i no longer feel that it is that. My hip is so painful it makes me cry. I got referred to a London hospital and am now waiting for a MRI. On the notes it says that my affected leg/foot has a positive planter reflex. I googled this and found that this is called the Babinski sign or reflex which is not good.

The letter i have asks for lesions to be identified and there is no mention of my discs to be looked at or anything. It also says there is no frank nerve compression (does this mean that its not sciatica?) I am having to use a wheelchair to get about.
I am so worried. My aunt and my cousin(not related) both have MS and i am beginning to think its whats wrong with me.

Am i worrying for nothing? I don't feel like i am but its such a long process to get all the exams done and my symptoms continue to spread and change.
Thanks in advance, Sara
[QUOTE=MSJayhawk;4814055]I hope the heating pad helps. I know it was difficult for me to sit, stand, or lie down. You might want to get your muscles checked too. I have had similar problems with muscle weakness on one side which caused by body to become off-balance. This can result in pains too, though not as excruciating as the sciatica pain for me. It did cause pains in my hips. I walked with forearm crutches for over 2 years to remedy this.

Stretching muscles and muscle groups is very important.

Stay strong and keep being the best mom you can be. My 12 year old has only known me as disabled and we do what we can together. Being there for your daughter is, I believe, more important than doing things with your daughter. Both of my sons have long ago accepted my physical limitations as part of who I am. My being there has been important to them. Love your daughter each day. MS, if you have it, does not stop you from being mom. For most, even after promotion to grandma, the title of mom never goes away. :angel:[/QUOTE]

Luckily i have a big garden that is planted up with plants and lots of fruit and veg so i spend all my time lurching around groaning and crying. Its completely enclosed so i feel happier there than anywhere else. I can do bits and pieces and leave a bit of a mess when the pain gets too bad but the housework is another matter. Even making a sandwich is hard work as i cant keep still to do fiddly things because of the pain.
My daughter is partially sighted so i have been her carer all her life as she is registered disabled with different problems. I actually think she is enjoying me not being in control, she is becoming a mini mummy to me. My boys are in their 20's and i have 2 ikkle grandchildren. Like you, its become normal for them to be around me in this pain. When my TN struck it was horrible for the little ones. If you didnt know better you would think i was giving birth in my shed when i was having an attack because of the noises i made to cope with the pain. :)
I am very active but even though i cant get out the house i must do miles of shuffling about every day, i am very forgetfull so i have to do everything loads of times....great exercise!

I tried the heat pad like you suggested but it relit the pain in my hip. :( if i want to sit down on my sofa i have to sit on my side curled up but i get horrendous pain for about 30 minutes until it settles but if i have to get up then the pain starts all over again. If i am on my feet, once the pain has subsided i can be ok for as long as i am upright, sort of.

My sciatica feels completely different. No more dull aching down the back of the thigh etc, its hip and ankle that is the worst. My lower leg feels ;ike it is being squeezed, not painfull just pressure. I dont ever remember anything like this before.

I still have this foot drop and the ball of my foot feels really fat. I cant stand on my heels but its not too bad its not painfull but i feel that i have a constant crampy pulling feeling in my foot. I did look up sciatica and foot drop but its not very common and it would normally be associated with cauda Equina. Again, ms came up in my search....a lot.
I get my lumbar result on the 12th and i have the brain mri on the 9th of this month.

What i would like to ask (if you know...) The brain mri is for the TN i developed this year, if the TN is as a result of MS, will the lesions be in the brain? Also, the Babinski reflex/sign i have in my foot is from high up the spine, do you know if it is the brain area again? Its definately nothing to do with sciatica, it is more commonly related to ms.

If i have got bits and pieces wrong, please correct me as i am a noob with all this medicle stuff. Everyone has told me to try not to think about it.yeah, right! LOL. I am on the think the worst and anything else is a bonus. I cant ignore the obvious and feel i am more prepared for a ms diagnosis. I cant step away from this, i am human and its in our nature. I do what makes me feel better.
Again, thank you for your time, it really helps. Its keeping me ticking over, Sara :wave:
[QUOTE=sara0;4814518]


What i would like to ask (if you know...) The brain mri is for the TN i developed this year, if the TN is as a result of MS, will the lesions be in the brain? Also, the Babinski reflex/sign i have in my foot is from high up the spine, do you know if it is the brain area again? Its definately nothing to do with sciatica, it is more commonly related to ms.

If i have got bits and pieces wrong, please correct me as i am a noob with all this medicle stuff. Everyone has told me to try not to think about it.yeah, right! LOL. I am on the think the worst and anything else is a bonus. I cant ignore the obvious and feel i am more prepared for a ms diagnosis. I cant step away from this, i am human and its in our nature. I do what makes me feel better.
Again, thank you for your time, it really helps. Its keeping me ticking over, Sara :wave:[/QUOTE]

Sorry to hear the heating pad did not work. It does not work for everyone. My neuro recommended my heat treatment to a few patients who were having similar pain. About half of them found relief.

When my MS worsened considerably in 2002, the doctors ran me through the MRI with and without contrast from my brain through my cervical spine. While lesions were present, none were active To explain my leg and hip problems. After the Visual Evoked Potential test, the indicators showed something was happening. This time they re-worked the MRI plan to include head through my thoracic spine. There were active lesions in my thoracic spine.

Lesion location can vary and it is or can be difficult to know where a lesion is and what it is affecting. Think about the number of meters of nerves running throughout your body. With the average body containing 72 kilometers of nerves and a lesion being quite small, it is difficult to find the lesions to begin with let alone to ascertain as to what is or is not being affected. Knowing what your symptoms are at the time of active lesions being found helps the neuro to know more about your condition. For me, most of my sciatica, leg, hip pains are more related to lesions on my thoracic spine, BUT a lesion higher up that is in the path that leads to my back and legs could also cause the pain. Each MSers conditions can vary.

I am glad you are there for your daughter and that you have obtained Grandmother status! Housework is always a bother. When I was alone at home I used my power chair and would hold the mop or vacuum wand between my feet and drive around the house to clean. There were some chores which I simply did not place on a high priority. You have to set your "bar" low some days.

If your daughter is full, clean, and safe- then you are doing well! When my mom developed Parkinson's and before I got really bad, I built raised beds in her garden. The beds are high enough that she can work on them from her power chair or from sitting on the edge of the bed. They make the garden easier to maintain and keep orderly.

You might look around your house and determine what requires the most energy from you and how a simple modification can help. For example, in my case lever handles on doors really help me as my grip is not good. They also allow my service dog to easily open the doors too! Though this is a small thing, after you spend 10 minutes trying to turn a standard doorknob, this small thing can become a big thing!

While it is difficult to not brood over MS or the possibility of MS, I believe that if you can take the focus off of self and focus on other people or tasks, our mind can relax. If you have MS, you need to learn a new lifestyle which allows you to embrace what is now normal for you. Grieving for what we lose can worsen our condition. I think that your daughter's growing independence will far surpass her physical limitations. The human effort can go as far as we allow it. There are physical limits with MS, but MS cannot limit our spirits. As long as we do not allow MS to imprison our spirit, we can go far.

After 33 years, I can tell you that there are bad days and really worse days, but when you average things out, my blessings still overflow. I wish this for you. :angel:
[QUOTE=MSJayhawk;4814849]Sorry to hear the heating pad did not work. It does not work for everyone. My neuro recommended my heat treatment to a few patients who were having similar pain. About half of them found relief.

When my MS worsened considerably in 2002, the doctors ran me through the MRI with and without contrast from my brain through my cervical spine. While lesions were present, none were active To explain my leg and hip problems. After the Visual Evoked Potential test, the indicators showed something was happening. This time they re-worked the MRI plan to include head through my thoracic spine. There were active lesions in my thoracic spine.

Lesion location can vary and it is or can be difficult to know where a lesion is and what it is affecting. Think about the number of meters of nerves running throughout your body. With the average body containing 72 kilometers of nerves and a lesion being quite small, it is difficult to find the lesions to begin with let alone to ascertain as to what is or is not being affected. Knowing what your symptoms are at the time of active lesions being found helps the neuro to know more about your condition. For me, most of my sciatica, leg, hip pains are more related to lesions on my thoracic spine, BUT a lesion higher up that is in the path that leads to my back and legs could also cause the pain. Each MSers conditions can vary.

I am glad you are there for your daughter and that you have obtained Grandmother status! Housework is always a bother. When I was alone at home I used my power chair and would hold the mop or vacuum wand between my feet and drive around the house to clean. There were some chores which I simply did not place on a high priority. You have to set your "bar" low some days.

If your daughter is full, clean, and safe- then you are doing well! When my mom developed Parkinson's and before I got really bad, I built raised beds in her garden. The beds are high enough that she can work on them from her power chair or from sitting on the edge of the bed. They make the garden easier to maintain and keep orderly.

You might look around your house and determine what requires the most energy from you and how a simple modification can help. For example, in my case lever handles on doors really help me as my grip is not good. They also allow my service dog to easily open the doors too! Though this is a small thing, after you spend 10 minutes trying to turn a standard doorknob, this small thing can become a big thing!

While it is difficult to not brood over MS or the possibility of MS, I believe that if you can take the focus off of self and focus on other people or tasks, our mind can relax. If you have MS, you need to learn a new lifestyle which allows you to embrace what is now normal for you. Grieving for what we lose can worsen our condition. I think that your daughter's growing independence will far surpass her physical limitations. The human effort can go as far as we allow it. There are physical limits with MS, but MS cannot limit our spirits. As long as we do not allow MS to imprison our spirit, we can go far.

After 33 years, I can tell you that there are bad days and really worse days, but when you average things out, my blessings still overflow. I wish this for you. :angel:[/QUOTE]

Sorry i didnt get back, i had a bad day yesterday, just couldn't get on top of pain. When i wake up in morning, if i don't walk about and sit at table i can last longer without the sharp shooting pain in my hip. I was using a small pc chair on wheels to get about downstairs. (till my son sat on it and it broke)If i stay sitting and i can do more. Its having to get up from sitting that gives me flashes of constant stinging pain.

I cant remember what sciatica pain feels like now. Hip, shin and ankle sharp pain is what i have. This week i have really suffered. Its been about 30 degrees here. Very muggy, YUK! Lovely and cool today and no rain. This morning my toes on the right are pulled apart with invisible fingers. Feels strange but not painful. The top of my foot is numb and the ankle feels like it is gripped tight with the invisible hand, again not painful.

I went shopping using a disability scooter and feel down. The battery never gets me round the store and i always end up having to change it, complete with all the shopping. Everyone looks and i feel so embarrassed. People look at you, then your legs and you feel them wondering whats wrong with you.

Yep, nerves and what they do is so complex!! I have understood the basics but there is so much to take in. From what i can gather, if i do have ms then a lesion would be present in my brain if i have TN from ms. My foot is a different story i think.

I was told i needed my lower spine to be fused because of my discs when i was 41 but after googling till i was numb i realised it was too risky and not a good op for my age group and as my sciatica came back in Feb i asked to get referred to The Royal Free in London as i knew they did disc replacement and felt this was a better option. When i went to my initial appointment i sort of had sciatica pain to the ankle and numbness, tingling in lower leg and foot, and mostly the appointment was about that. I mentioned that i had developed TN a few months earlier as they only knew about the leg pain. This is where the babinski reflex was picked up. I am waiting for the scan result which i get on 12th this month. I have had so many other symptoms since then that they dont know about hopefully i will get the spine mri.

What is confusing me is they ordered a lumbar spine asking for lesions to be identified. The Dr i am seeing is a spinal and brain bloke/bones, so doubtfull if he is very knowledgeable with ms. Do you think he was looking for ms lesions(not found in lumbar) or just lesions not related to that? Why look for lesions at all? I have the brain MRI on the 9th.

I spose you can not remember life without ms as you have had it for so long. You seem like a strong person and it humbles me. I feel like a whinging fruitcake who can gurn for England. Us women are meant to be able to deal with pain better than men. :o

Today i am waiting for a call from the neuro that saw my TN to ask if they can get the brain mri changed so it looks at the right place. Fingers crossed they do as it will cut down loads of faffing about.

Thanks again for your reply and advise. My daughter has taken to being my helper like a duck to water. She said she doesnt want to have children, just wants to look after me. She said she cant push a wheelchair and a baby lol. I feel blessed to have a daughter. My mum told me that she was special and i had her for a reason when she was born 3 months early. I never understood it but when my mum was dying 5 years ago she said one day i would reap the rewards. I think the time has come.
Sara
[QUOTE=sara0;4816308]
I went shopping using a disability scooter and feel down. The battery never gets me round the store and i always end up having to change it, complete with all the shopping. Everyone looks and i feel so embarrassed. People look at you, then your legs and you feel them wondering whats wrong with you.

Yep, nerves and what they do is so complex!! I have understood the basics but there is so much to take in. From what i can gather, if i do have ms then a lesion would be present in my brain if i have TN from ms. My foot is a different story i think.

I was told i needed my lower spine to be fused because of my discs when i was 41 but after googling till i was numb i realised it was too risky and not a good op for my age group and as my sciatica came back in Feb i asked to get referred to The Royal Free in London as i knew they did disc replacement and felt this was a better option. When i went to my initial appointment i sort of had sciatica pain to the ankle and numbness, tingling in lower leg and foot, and mostly the appointment was about that. I mentioned that i had developed TN a few months earlier as they only knew about the leg pain. This is where the babinski reflex was picked up. I am waiting for the scan result which i get on 12th this month. I have had so many other symptoms since then that they dont know about hopefully i will get the spine mri.

What is confusing me is they ordered a lumbar spine asking for lesions to be identified. The Dr i am seeing is a spinal and brain bloke/bones, so doubtfull if he is very knowledgeable with ms. Do you think he was looking for ms lesions(not found in lumbar) or just lesions not related to that? Why look for lesions at all? I have the brain MRI on the 9th.

I spose you can not remember life without ms as you have had it for so long. You seem like a strong person and it humbles me. I feel like a whinging fruitcake who can gurn for England. Us women are meant to be able to deal with pain better than men. :o

Today i am waiting for a call from the neuro that saw my TN to ask if they can get the brain mri changed so it looks at the right place. Fingers crossed they do as it will cut down loads of faffing about.

Thanks again for your reply and advise. My daughter has taken to being my helper like a duck to water. She said she doesnt want to have children, just wants to look after me. She said she cant push a wheelchair and a baby lol. I feel blessed to have a daughter. My mum told me that she was special and i had her for a reason when she was born 3 months early. I never understood it but when my mum was dying 5 years ago she said one day i would reap the rewards. I think the time has come.
Sara[/QUOTE]

Sorry to hear of your pain. As for the stares while using a shopping scooter, ignore them. I would recommend a power chair over a scooter as it is more maneuverable.

As to the lumbar scan, I would suspect that it was a matter of your discs rather than MS as I do not recall lesions found that far "south". If something makes you question a procedure, always ask. I think that most doctors would appreciate the interpersonal relationship rather than a one-sided one. If you do get your back fused, please be aware that additional back surgeries will likely follow. Disc replacement is certainly getting better and I hope it works for you. Still, do what you have to do for yourself!

As most of my life has been spent with MS, it is simply part of me. While I do remember life before MS, It is difficult to know when my MS actually started, so it is simply not something I dwell upon. My life's blessings and good memories have, for the most part, been enjoyed while I have had MS. I certainly do not have any regrets. God blesses me each day and my walk, though physically difficult, spiritually it seems to get easier.

When they do your brain MRI, make sure they do with and without contrast and see if they can include your cervical spine.

You are blessed to have such a caring daughter. You are in my prayers.:angel:





All times are GMT -7. The time now is 03:58 PM.





© 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!