can anyone help me please!
 

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

WOW, sweetie, it sounds like you have been through it, and are scared to death and wandering the bad lands looking for a home. :hug:

There are more than 100 diseases that can mimic MS.

B12 def, lyme, lupus, sjogrens, devics, and so forth. many many to check out.

If you go to an MS MD, they tend to see MS things. MS is usually the culprit after the blood tests rule out things like vitamin stuff, and lyme. (btw the lyme test should be send to a special lab, as most labs come up with false positives on that one) If you go to a Rheumatologist, they will point out arthritis type things.

medicine isnt something that you walk, or get dragged into someone's office and they say..."hmm, i think you have xyz." what normally happens is they start to rule stuff out. Ok, your Vit B12 level looks great, so its not that. Your lyme titer was great, so its not that and you have both sided symptoms at the same time, so its not this...see where I am going? so, after being handed a bucket with 100 things in it, its the MDs job to sort out which one of those tags most closely fits YOUR profile, symptoms and blood work.

This is why so many get left on Limbo isle for so long. The MD only looks at HIS part of the puzzle. Ok, its not MS, so we are gonna send you back to yoru primary care MD. ok, its not devics, so we are sending you back to your primary care MD. This is why is uber/mega important to have a primary care MD do the quarter back stuff for you. Be the lead dog.

Could it be MS? well, sure, O Bands in spinal fluid dont normally show up unless you are in an ACTIVE period of flair. 3 lesions, normal Spinal, and I dont know about your blood, but normal VEP tends to make them want to look elsewhere. ASk your primary care person (PCP) to start with the easy stuff. lets do a full round of bloods and start knocking out some easily proved or disproved ones.

I know its not the perfect answer but I hope it helps you find directions and guidance. If you dont like/trust your PCP. please get a new one who will untangle the puzzle with you.

hang in there. :hug:

:hug: Sorry to hear about everything you're going through. The DX process can be long and frustrating.

My VEPs were normal, and my LP was inconclusive during the DX process - So they looked for everything under the sun that this could've been. My brain leisons are very typical of MS (Dawson's Finger Effect) and I have three MS plaques in my spine, but they still did a lot of testing to rule out the mimics. I had about 12 bloodtests. :eek:

In the end, with everything else ruled out, It took back to back flares to DX me. Changes between three brain MRIs and Changes in my clinical exams within a year's timeframe (Went from 4 leisons to 6 to finally 9).

Hang in there! Hoping you find the answers you need soon. :hug:

hi sunny,

i'm sorry for what you're going thru. and i'm sorry you're feeling so bad.
i would also go back to your pcp.
was your neuro exam abnormal?

after an abnormal neuro exam i was sent for brain mri in which i had several lesions. no vep's. no c-spine. no LP. i was dx'd by my exam, clinical picture and brain mri. then i sought a 2nd opinion just to be sure. this dr (MS specialist) wanted a c-spine mri (+) and an LP (+).

you might need a 3rd opinion. you might contact your local MS society for md referrals and for any MS specialists in your area. try to get copies of your records, or at least cd's of your mri's.

sit down with a notebook and make a timeline (dates) of the onset of your sx's (symptoms). this will all help any future drs you see.

i also think it's a good idea to do a c-spine mri. your pcp can order it, you don't need a neuro to do that. if you have some brain lesions it's best to cover all your bases.

try to bring a family member or friend with you to the appt as a 2nd pair of ears. or to write things down that are discussed.

you're your own best advocate. don't give up. this process is difficult i know.
keep pushing til you find answers.

please keep us posted.

Hi Sunny, nice to meet you.:) I hear you, loud and clear and understand your woes.:(

You have received great ideas and advise here and I have nothing to add, other than, you could use a less impatient, more understanding Neuro.:rolleyes:

I would like to especially ditto what Dejibo said..:)

Welcome home dearone..:hug:

Thanks everyone
 

thanks to you all for taking the time and trouble to write.
It really helps a lot to have the support of those who have been through it or are still going through it.

i know ive started to feel a little crazy with not knowing what is going on with me and ive felt even worse when what seemed like the 'main guys' the neurologists are not knowing, saying one thing then another, it is so confusing.
I'm researching a lot lately and it is taking a lot of my time, i'm usually so upbeat and positive but this has really knocked me down.

I dont know what its like in the u.s but here in the u.k although it is national health service, it means a long wait inbetween appointments and scans, sometimes six months. I worry because my legs are weaker where i now use a stick and want to get on the right track for treatment.

Thanks for all your advice and suggestions,take care all and very best wishes.

Hi Sunny,

When I had my original attack, they first thought a virus too. In fact, it probably was a virus (that triggered the MS) . . . but only time would tell if MS was the underlying cause.

Whether it had been a virus which messed up my nervous system, or a MS-attack, the immediate reprocussions were the same. I was incapacitated, damage was done, and I had ongoing disability from that EVENT forward.

What I had to do then was sit back and wait for the disease to come out of hiding, or not. I was hoping not ...

I was left with deficits, which continued to plague me and worsen. It's kinda' like when you see a stroke victim who's i.e. arm continues to claw worse and worse as time goes on. Once the damage is done, it either improves, stays the same (not usually), or gets worse over time . . .

So, what they did with me (as it seems they have done with you), is tell me to sit back and wait for the next shoe to drop. In my case it did, but not for 12 yrs. Things became abundantly clear at that point. :rolleyes:

They are looking to see changes in your testing, and/or a sudden influx of new symptoms which should subside somewhat in time. This is basically how Relapsing Remitting MS unfolds.

On the other hand, if you had Primary Progressive MS, they would expect new symptoms to come on (generally in a diffferent neurological area of the body), and for them NOT to subside much over time.

It's a puzzle they piece together, as others have mentioned. Sometimes it takes a long time to do that.

Attached is information on what they are looking for to dx MS, and a list of other diseases/conditions that mimic MS:

http://www.neurology.wisc.edu/public...bs/Neuro_2.pdf

Good luck on getting to the bottom of your health issues. :hug:

Cherie

I don't think this is correct, Dejibo. From my understanding, O-bands found in MS are almost always permanent, and will not fully recover over time or with the use of drugs. That is not true with most other diseases that have O-bands though . . . .

Cherie

Hi Sunny! No need to apologize~ that's what wer'e here for. I can tell how frustrated you are- been there, done that. I think you've been given some great advice here and I hope you can get some answers from you Dr's soon. Not knowing what's going on, is very stressful.

Unfortunately, for some, the answers take longer to get. Please check out our forums here and make yourself at home. And, don't hesitate to ask for help/advice/ I'm glad to meet you and glad you found us.

http://dl7.glitter-graphics.net/pub/...f1zv5yez6v.gif

Hi Sweetie,

I'm sorry you're going through this. Being in limbo is a horrible place to be.

I've been dealing with similiar symptoms and problems as yours for over two years now and am no closer to finding answers, though I've seen several neurologists, rheumatologists, and other "-ologists" too numerous to mention, and none of them had the answers I need.

So, I've decided that sometimes there are no answers to be found. I'm currently on medications to help alleviate my worst symptoms and am not actively seeking a diagnosis at this time. I know that there's something bad wrong, but that something may never have a name.

Hang in there. Try to get medication for your symptoms so your quality of life can improve. And remember, you're not alone.

Hugs,

Lisa

Last I checked, peri ventricular lesions, and spinal lesions even in the face of negative spinal tap is enough diagnostic critera for dx.

Is your MD an MS specialist. If not, I would book an appointment, even if only once to see an MS specialist. Alot of neuro type people deal with migraines, strokes, and traumatic brain injuries, and leave the MS stuff to the big boys.

is there a center around? :hug:

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

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.

Hi Sunny, and Welcome to Neurotalk! :) :hug:

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...

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

I wish you the best and there is an answer
 

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

Thank you and more questions.
 

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:grouphug: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

me again, more questions in need of answers..if you dont mind
 

:grouphug: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

So sorry, Sunny. :hug: Let us know how your tests go, K?