Hi All,
In the middle of testing
Awaiting blood test results
Booked in for : MRI brain and spine,nerve conduction study,EVP(somatosensory)
General consensus by all my medical professionals(including neurosurgeon and neurologist) at this point is that is probably MS. Had many many wrong diagnosis previously
What do you think?does it fit MS well??
MS is personally my worst case scenario and never entered my thinking till 6 weeks ago when neurosurgeon requested LP to test for the bugger.Hoping to disprove their theory even if only in my mind.
These are my personal symptoms to date,don't know correct terminology for most of them sorry
spasms and tremors (both hands,many Emergency visits cause if i over do things that spasms can last hours,but tremors are just everyday they dont leave it seems)
Right leg paralysed/numb (ankle weird as a result-since dec 2013)
Burning hands and feet after walking,standing still too long,hot sun or daily tasks(since 2008)
Extreme fatigue/ridiculous fatigue levels
Encopresis(diagnosis:8 yrs old- severe constipation)
back pain
partial faints from heat any heat(blurred vision incoherent,dizzy etc-since yr 4 primary)
Choking on stuff constantly including my own saliva which is embarrassing
Entire right arm numbness(resolved a lot just weakness now)
Loss of function and strength in general,problems gripping,walking etc
memory issues/mind blanks(really frequent now over the last year and a half)
Urinary issues(laughing or coughing means leakage basically time to change knickers also embarrassing)
Odd flickering feeling/pain in my left eye particuarly with heat
Balance is awful(mostly due to r leg being so numb I think)
I think that's it. Most of these have gotten worse over the last 7 yrs but some I had as a child were never investigated cause our family didn't believe in illness or doctors "to be sick is to be weak"
I know i'm awfully young to have all these things going on but like I said nothing was ever looked into cause I had trouble convincing my family that something was badly wrong up till 2-3 yrs ago,let alone friends or doctors.It is what it is but just want some opinions as to whether these doctors are on the right track.Welcome to just say yes or no if you don't want to fully reply but the more opinions the better.
It's destroying my life and my work life whatever it is,need to get it sorted
Welcome to my life
Thank you in advance
Kitty
Just want an opinion from actual patients ,could this be MS?
Re: Just want an opinion from actual patients ,could this be
no opinions?..lot of views no replies?
Did I post in the wrong place? I'm very new here so still learning the ropes
Did I post in the wrong place? I'm very new here so still learning the ropes
Re: Just want an opinion from actual patients ,could this be
Hi,
You posted in the right place.
Don't think of MS as a worst outcome, think of it as a chance to identify your symptoms so you can take appropriate action. It would be worse if it is not diagnosed as anything at all. The symptoms may be MS but they occur in lots of conditions.
Whether or not its MS, you have a lot of individual symptoms to address. Diet, nutrition, possible infections, exercise and lifestyle are all things to start to look at.
Good luck with the tests. Either way an answer is better than no answer.
Regards
You posted in the right place.
Don't think of MS as a worst outcome, think of it as a chance to identify your symptoms so you can take appropriate action. It would be worse if it is not diagnosed as anything at all. The symptoms may be MS but they occur in lots of conditions.
Whether or not its MS, you have a lot of individual symptoms to address. Diet, nutrition, possible infections, exercise and lifestyle are all things to start to look at.
Good luck with the tests. Either way an answer is better than no answer.
Regards
Re: Just want an opinion from actual patients ,could this be
Good points um exercise and lifestyle...I used to dance 3 days a week(only stopped in 2011) till all this happened so old eating habits die hard. I live for healthy food and salads by choice and fruit,especially love mandarins.Exercise wise hydro once a week and try to stretch of a night time to keep my figure. I also do my best to catch public transport to keep up my walking and make the leg move that doesn't. Stretching doesn't really work anymore but I'm trying still
Actually really proud of how healthy I am except for the nerve stuff I don't drink except once in a blue moon and never smoked thank goodness.So basically I love my body and look after it but the medical issues are making it hard.
Hehehe feel really proud reading this I even taught myself to walk again without feeling and balance lol ,took 5 months but I did it.
If there's one thing I'm sure of its that my lifestyle is great even if my body isn't
Unfortunately I only know the history on my mums side but nothing major in that either.
Actually really proud of how healthy I am except for the nerve stuff I don't drink except once in a blue moon and never smoked thank goodness.So basically I love my body and look after it but the medical issues are making it hard.
Hehehe feel really proud reading this I even taught myself to walk again without feeling and balance lol ,took 5 months but I did it.
If there's one thing I'm sure of its that my lifestyle is great even if my body isn't
Unfortunately I only know the history on my mums side but nothing major in that either.
Re: Just want an opinion from actual patients ,could this be
Hi,
I'm very impressed by your attitude. If it is MS then you will need to bring that approach to dealing with it.
There are different things you can do for different symptoms. Just don't search for a thing called MS because you will never find it.
When you stretch, do you stretch the psoas muscle? That will be key. As it is hard to work a lot of people overlook it. (A good pilates instructor won't miss it.)
How do you deal with the constipation? Tight muscles and bowel problems often occur together. I found the muscles were helped by a tiny dose (5mg , no more) of Baclofen and that also helps the bowel as all the medication affects is a receptor called GABA beta receptor which influences skeletal muscles and is also found in the small intestine. Too much (ie 10mg) has the wrong effect on me. I'm sure you have effective ways of dealing with the problem but I found three fresh figs for breakfast or a fresh pear makes a difference.
If it is MS, then you might find how I dealt with it of use - http://www.thisisms.com/forum/regimens- ... 24019.html
Regards
I'm very impressed by your attitude. If it is MS then you will need to bring that approach to dealing with it.
There are different things you can do for different symptoms. Just don't search for a thing called MS because you will never find it.
When you stretch, do you stretch the psoas muscle? That will be key. As it is hard to work a lot of people overlook it. (A good pilates instructor won't miss it.)
How do you deal with the constipation? Tight muscles and bowel problems often occur together. I found the muscles were helped by a tiny dose (5mg , no more) of Baclofen and that also helps the bowel as all the medication affects is a receptor called GABA beta receptor which influences skeletal muscles and is also found in the small intestine. Too much (ie 10mg) has the wrong effect on me. I'm sure you have effective ways of dealing with the problem but I found three fresh figs for breakfast or a fresh pear makes a difference.
If it is MS, then you might find how I dealt with it of use - http://www.thisisms.com/forum/regimens- ... 24019.html
Regards
Re: Just want an opinion from actual patients ,could this be
that's really helpful Scott thank you
My stretching these days involves trying to move legs off the bed and rotating my arms and stuff, I did try yoga for a while but between dizziness and feet collapsing underneath me I had to stop.I only have function in one leg now so do my best to flex the ankles and hips etc. but i back it up by stretching properly in the hydro pool,still attempt do my ballet stretches in warm water when I can.. like I said old habits die hard.
I'm on dulcolax, and massage my tummy and warm soaks in the bathtub all help and apart from that the healthier I eat the less blocked I get realistically. Prunes and an orange make a good breakfast
My stretching these days involves trying to move legs off the bed and rotating my arms and stuff, I did try yoga for a while but between dizziness and feet collapsing underneath me I had to stop.I only have function in one leg now so do my best to flex the ankles and hips etc. but i back it up by stretching properly in the hydro pool,still attempt do my ballet stretches in warm water when I can.. like I said old habits die hard.
I'm on dulcolax, and massage my tummy and warm soaks in the bathtub all help and apart from that the healthier I eat the less blocked I get realistically. Prunes and an orange make a good breakfast
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lyndacarol
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Re: Just want an opinion from actual patients ,could this be
Hi again, Kitty. As I have posted my opinion elsewhere: Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"kitty2015 wrote:In the middle of testing
Awaiting blood test results
Booked in for : MRI brain and spine,nerve conduction study,EVP(somatosensory)
General consensus by all my medical professionals(including neurosurgeon and neurologist) at this point is that is probably MS. Had many many wrong diagnosis previously
What do you think?does it fit MS well??
MS is personally my worst case scenario and never entered my thinking till 6 weeks ago when neurosurgeon requested LP to test for the bugger.Hoping to disprove their theory even if only in my mind.
These are my personal symptoms to date,don't know correct terminology for most of them sorry
spasms and tremors (both hands,many Emergency visits cause if i over do things that spasms can last hours,but tremors are just everyday they dont leave it seems)
Right leg paralysed/numb (ankle weird as a result-since dec 2013)
Burning hands and feet after walking,standing still too long,hot sun or daily tasks(since 2008)
Extreme fatigue/ridiculous fatigue levels
Encopresis(diagnosis:8 yrs old- severe constipation)
back pain
partial faints from heat any heat(blurred vision incoherent,dizzy etc-since yr 4 primary)
Choking on stuff constantly including my own saliva which is embarrassing
Entire right arm numbness(resolved a lot just weakness now)
Loss of function and strength in general,problems gripping,walking etc
memory issues/mind blanks(really frequent now over the last year and a half)
Urinary issues(laughing or coughing means leakage basically time to change knickers also embarrassing)
Odd flickering feeling/pain in my left eye particuarly with heat
Balance is awful(mostly due to r leg being so numb I think)
I think that's it. Most of these have gotten worse over the last 7 yrs but some I had as a child were never investigated cause our family didn't believe in illness or doctors "to be sick is to be weak"
I know i'm awfully young to have all these things going on but like I said nothing was ever looked into cause I had trouble convincing my family that something was badly wrong up till 2-3 yrs ago,let alone friends or doctors.It is what it is but just want some opinions as to whether these doctors are on the right track.Welcome to just say yes or no if you don't want to fully reply but the more opinions the better.
It's destroying my life and my work life whatever it is,need to get it sorted
Welcome to my life
Thank you in advance
Kitty
I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).
@25:50 The statement appears on the screen: "It is medically negligent not to rule out B12 malabsorption in symptomatic patients."
There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.
If one of your doctors will screen you for a possible B12 deficiency, the initial testing should include:
#1 a serum B12 (this test is considered outdated by many, but the newer, more reliable HoloTc test may not yet be available in your area – just ask)
#2 a serum (or RBC) folate test
#3 a serum homocysteine test
#4 a methylmalonic acid test (either the serum or urinary form)
Request your own copy of your test results.
Do not take vitamin B supplements before testing, as doing so will skew test results.
Any person at any age can develop a B12 deficiency. There are now so many pediatric cases of MS in the US that 6 pediatric MS clinics have been established across the US (I have even read of a case in a two-year-old!) . B12 deficiency and MS look the same, have the same symptoms; testing is needed to tell them apart.
Re: Just want an opinion from actual patients ,could this be
Hi again,
It sounds like the problems with dizziness and heat could relate to vasodilation. They could also suggest some nerve damage but you could try what I do and see if it helps.
On diet, my only rule is to stay away from things are known to promote inflammatory reactions. Gluten and diary can both cause that and you probably have a few things you know of that don't agree with you. For breakfast I like boiled eggs and fruit. Some people cant have eggs but they are a pretty complete meal. Always eat a breakfast, don't skip it.
I do take some supplements; before bed I take coenzyeme Q10, acetyl-L-carnitine. The right dose of Q10 is hard to establish. I would start at 150mg and two days later increase it to 300mg. If you don't notice anything take up to 450mg and stay on that for a while. The right dose for acetyl-L-carnitine is around 1000mg morning and night. The Q10 is a critical part of the electron transport chain that enables energy to made in the mitochondria. The carnitine is the transport agent that ferries the ADP and ATP across the mitochondrial wall. They should help your cells respire better so you can make energy and spend it.
To assist with vasodilation, try L-arginine. Just a teaspoon in a glass of water. It tastes disgusting but it does help.
Did you ever have glandular fever? Many of us look at the virus behind that (Epstein-Barr virus) as strongly associated. You should be tested for it and we have ideas on that. Also look for mycoplasmas, chlamydia's and, if you are in the right area, the infections related to Lyme disease. Most of them can be treated and they are all debilitating. If you can find out if you have them there is a lot of advice we can suggest.
I found a simple glass of freshly squeezed carrot juice was also beneficial on a number of levels both as an antiviral and as a way to restore normal gut function.
At this point you are probably better of finding out what the tests say as its important to be evidence based. What I've suggested cant hurt you anyway.
Regards
It sounds like the problems with dizziness and heat could relate to vasodilation. They could also suggest some nerve damage but you could try what I do and see if it helps.
On diet, my only rule is to stay away from things are known to promote inflammatory reactions. Gluten and diary can both cause that and you probably have a few things you know of that don't agree with you. For breakfast I like boiled eggs and fruit. Some people cant have eggs but they are a pretty complete meal. Always eat a breakfast, don't skip it.
I do take some supplements; before bed I take coenzyeme Q10, acetyl-L-carnitine. The right dose of Q10 is hard to establish. I would start at 150mg and two days later increase it to 300mg. If you don't notice anything take up to 450mg and stay on that for a while. The right dose for acetyl-L-carnitine is around 1000mg morning and night. The Q10 is a critical part of the electron transport chain that enables energy to made in the mitochondria. The carnitine is the transport agent that ferries the ADP and ATP across the mitochondrial wall. They should help your cells respire better so you can make energy and spend it.
To assist with vasodilation, try L-arginine. Just a teaspoon in a glass of water. It tastes disgusting but it does help.
Did you ever have glandular fever? Many of us look at the virus behind that (Epstein-Barr virus) as strongly associated. You should be tested for it and we have ideas on that. Also look for mycoplasmas, chlamydia's and, if you are in the right area, the infections related to Lyme disease. Most of them can be treated and they are all debilitating. If you can find out if you have them there is a lot of advice we can suggest.
I found a simple glass of freshly squeezed carrot juice was also beneficial on a number of levels both as an antiviral and as a way to restore normal gut function.
At this point you are probably better of finding out what the tests say as its important to be evidence based. What I've suggested cant hurt you anyway.
Regards