can anyone help me please!

sassy · 08-04-2008, 08:49 AM

Quote:

Therefore, CSF analysis by itself cannot confirm or rule out a diagnosis of MS. It must be part of the total clinical picture that takes into account the findings on the person’s history and neurologic exam, other diagnostic procedures such as evoked potentials and magnetic resonance imaging (MRI).

http://www.nationalmssociety.org/abo...-ms/index.aspx

Quote:

At this time, there are no symptoms, physical findings or laboratory tests that can, by themselves, determine if a person has MS. The doctor uses several strategies to determine if a person meets the long-established criteria for a diagnosis of MS and to rule out other possible causes of whatever symptoms the person is experiencing. These strategies include a careful medical history, a neurologic exam and various tests, including magnetic resonance imaging (MRI), evoked potentials (EP) and spinal fluid analysis

MS is one of the most difficult diseases to prove or disprove. I tell people to rely on their gut, if they are not happy with one neurologist's dx then ask for another opinion. But, please do not let it consume you.

ewizabeth · 08-04-2008, 09:13 AM

Hi Sunny, and Welcome to Neurotalk!

I'm so sorry for what you've been through. Unfortunately we hear this all too often, with patients being stuck in limbo and doctors who don't seem to listen well or comprehend what you're going through.

I hope you'll get answers soon. Maybe there is something on the spine that they'll see on the MRI? Keep us posted and take care...

sunnyday · 08-04-2008, 10:06 AM

Thanks for all of this valuble info and for the support, it's such a comfort to know i am understood and not alone once again thank you from the bottom of my heart.

I will check into seeing an ms specialist person as i haven't seen one thus far and i will look at getting help will keeping the awful symptoms at bay (if anything can do that)
so i can at least try and get on with it all.

love to you all xxx

Jetty · 08-04-2008, 10:50 AM

Quote:

Originally Posted by sunnyday

Hello to everyone and thank you for looking at this.I am really in need of answers as I am getting worse and need a dx so i can then do what i need to do to stop getting any worse than this.

I am female aged 43, 3 years ago I suffered an episode after a virus had put me in bed,then i woke one morning after a popping head pain and was unable to walk as normal.I could not co ordinate my hand movements and i saw my doctor who reffered me to the hospital. I had a brain mri which showed three lessions and the neurologist told me they were not looking at anything other than ms.

I picked myself up from that after the initial shock and tried to carry on as best i could.

I have had various symptoms since including, heavy, weak legs.The left leg being weaker with a vibration feeling left knee when touched. My left arm is numb and i can not feel the needle when having blood taken. My face is numb and most parts of my body, some more than others. I limp and find my left leg needs lifting when i walk.

I have other symptoms which include piercing head pain on one side, piercing ear pain, eye pain and brain fog with a spaced out feeling. I can only walk or stand for 10 minutes then heavy legs. I get tired making my bed but some days are better than others.I have learned to do less and pace myself.

I am told i dont have ms now since lumbar puncture results normal and evp normal, also second brain mri unchanged.I have seen 2 neurologists had ana bloods done and for hughes syndrome, diabetes, thyroid a little abnormal but all normal.The neurologist all but said this is all in my mind, even though i am not an anxious person or one that wishes to be like this (does anyone) i just want to be normal, or at least know how to treat my problems and get on with life.

I went back to neurologist with the hope of getting help for my increasing symptoms and legs but find that the 2nd neurologist now thinks me not a neurology case, so what am i? at least the 1st neurologist said he thought i had fybromyalgia and had ms symptoms (although he no longer thought ms), so i could see him again.

I am sorry to go on, i am so confused and feeling ill with what seems like no help.My doctor is good but has no idea what to do with me now.I feel anxious only because of interegation type interview with 2nd neurologist, which only makes me feel worse.(i saw 2nd neurologist for another opinion)

I am awaithing mri of the spine although 2nd neuro thinks nothing will be found (he must be physicic)

Thank you so much to all who read this very long report, which i apologise for but i hope you understand and can offer any help.

Best wishes

SUNNY:

My dear "Just MS" is a load in and of itself! We have a 40yr old son whose symptoms started ALMOST like yours--only got worse and mimicked a stroke. One MD At a Tufts U hosp felt he needed a heart transplant as his heart had enlarged!

I can't go into all of it with you but one thing I know is that the BEST thing that you can do for yourself is get into a support group. I really think that you should consider going to to a large and prestious hospital, such as the Cleveland Clinic, Mayos, Harvard Med.school--one that has a pristine reputation. YOu can ask your primary doctor about it--no , TELL him you wish a 2nd opinion and he can set it up for you. Try to find one that isn't TOO far from your home as it makes it easer.. OUr son lives in MA and is 2 hours from Boston and now is in a research MS group at Harvard.THAT is what you need. He goes there every 90 days or so and is checked out and they have all his previous papers from other MDs on hand. They evaluate what is the BEST medical regimen for you and then follow up on it to see how you do! You will feel much better as you know you're doing the best you can--and that helps. YOu might also have an MS Support group in your area.Talk to your Dr.'s office to see if they have a list of different support groups. Another option is to call a local hospital to see if they have such a list. Some people swear by them, others are lukewarm, but you won't know if it's for you unless you try. The symptoms for MS vary a LOT. There are several kinds and one is treated differently depending on what kind you have. (Steve has what is called "relapsing-remitting MS". Steve give himself a daily shot of Copaxone (done like a diabetes shot). There are meds that are done by IV once a month. Good luck--go try. Don't give up!! JETTY

sunnyday · 08-05-2008, 03:14 AM

[LIST=1]

Thank you for all the good advice. I dont know if i said i am in the u.k and i think it is done differently here.

I will go back to my doctor and ask her to send me somewhere else and to a specialist ms neurologist if she can, but on the national health service i doubt there is anywhere else left to go, so i will have to foot the bill to see some one privately, which of course i will in order of getting somewhere better than this state i'm in now (when i can get the funds together).

Ive heard there are university places which look into all this, but are they available to see patients?

and could anyone tell me if they know, can you get lessions on the brain from other things, i believe a stroke would do it but i dont know of other things. (I believe i have three white matter- whatever that signifies i dont know) the first neurologist i saw said it was 'only' so he thinks at least it not too significant.

Also please, would i need to see a specialist in another field, as the second neuro said he thinks i might not even be a neurology case?
the confusion mounts, made worse by these proffesionals..not forgetting three years ago after an episode which landed me in hospital, the neurologist there said it wasn't anything other than ms.

Thank you in advance once again for all the help and support.
Much love xx

sunnyday · 08-05-2008, 03:31 AM

Hi again,

forgot to say, i have numbness pretty much all over body, which seems worse on left side (but may be same?) left leg is weaker, especially fuzzy viration feeling in left knee.I have numbness in face where it is strange when i stretch face muscles, as i know i'm doing it but it's weird! also my head, when touched its no feeling and almost annoying in the hairdressers as that too is a weird feeling. To top it off i cant feel my 'pelvic floor muscles' either and haven't done since the episode three years ago.

Will this get worse if left untreated? i'm worried without the right treatment i will get worse and maybe end up not walking and worse.

Ive started using a stick now which i didn't need not so long ago, the second neuro i saw questioned my need to use a stick and said i should see physio incase i'm not using my legs as i should be and believe me if i could run, dance, ski all the things i love, i would in an instant so what is he thinking!

He is sending me for mri of spine and evoked potential i think its called,
of legs, although he said he doubted to find anything,but might it show anything if i am so numb, surely that is to do with nerves and would that not show up on these tests?,

Thank you, xx

Twinkletoes · 08-05-2008, 12:25 PM

So sorry, Sunny.

Let us know how your tests go, K?

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