fed up of waiting!!

[21angie]

Hi everybody i am quite new to this forum but am very pleased with the information which people have provided me with. I had a repeat mri 3 weeks ago and still i am waiting for results so FRUSTRATING thats the nhs for you even though i work for them.Why do theses results take so long has anybody else waited this long?? Anyway just a few questions that i hope you great people can answer .
* is burning/sore back pain common in ms ? currently taking high doses of codeine as nsaid do not work.
* i keep having painless muscle twitches thighs, eyelid, hip,calf
* big toes are numb/strange sensation, numb sole on right foot,fingertips sometimes numb but big toes numb for 11 months!!
*feet are often cold and blue and symptoms are even worse after a bath strange!! thanks xx

[uk2]

Hi

Thats ok you can talk to me any day and if you dont want to chat onn the forum you can private message me.

Its frustrating to think if i had had the money to go private i would of proberly been seen by the same neuro as he does private and NHS and i would of had the results by now and on proper treatment.

People act in the strangest ways people feel they should do something when they hear your not well!!

Take Care

Samantha x

[cherriepit]

I get totally frustrated too when I have to wait weeks and weeks for an answer. American health system is messed up by the core, even you wait 4-6 hours in the emergency room, then if you want an insurance you end up paying hundreds of dollars monthly or you end up with a hospital bill which makes you go bankrupt. Everyone knows but we can do little about it. So just hang on, it will come! I hope the bests for you!

[21angie]

thank you for your message i read your profile, do you have back problems as well or is it just your feet fingers??

[21angie]

yeah as a nhs employee i know how overloaded the system is, and yes in america there health system is private and they seem to have more control, and i agree we do pay for this health service through our wages so we to should have more say, but i think as usual this goes back to all the governments unforefilled promises!! thanks for your replies its nice to talk to people who truly understand what your going through, i feel like i am always boring my hubby and friends and i think they are more worried than me they have even sent me flowers, i am like im not dying!!! thanks angie xx

[21angie]

thanks a very helpful explanation of syrinx's here in the uk they think nothing of sending you out a letter which explains nothing!! Am awaiting results so fingers crossed thank you for your info, angiexx

[needanswers54]

Rather simply stated:  You have a central canal for CSF in your spinal cord.  If there is extra fluid in the center due to a cyst or flow impediment due to a structural abnormality (such as an orthopedic problem/disc protrusion, etc. or lesion, the central canal can dilate.  You can sometimes also have a high CSF pressure.  You can get various weird and painful symptoms.  You may get weakness and severe headaches.  Some syrinxes are idiopathic (of unknown cause) and not found to cause much problems.  But, they can also be indicative of a congenital, orthopedic, or disease process that needs attention.  Some people get them years after a car accident.  Those are called traumatic syrinxes.  

If there is an ongoing process causing the syrinx, it should be evaluated for possible treatment to prevent further spinal damage.  It is thought that obstruction can prevent the flow of the spinal fluid in the cord, causing a back pressure and eventual cyst or syrinx enlargment downward.  This can cause spinal cord damage.  I am not saying this to scare you. There are syrinxes that are self-contained within the cord (non-communicating) and there are communicating.  If the canal dilates enough from fluid, the spinal cord can eventually get larger in diameter and cause problems.  

Truly large problematic syrinxes are uncommon. however.

I would keep in touch with your doctor's office.  If you cannot get any feedback you can request a copy of your report and take it to another physician.  If I were having physical therapy I would probably let the therapist know.  I am not a doctor; this is just a basic outline of what I have been informed.  Hope this helps.  Have a great Thanksgiving!

[uk2]

Hi

I guess as you work for the NHS you must know how it works and frustrates you more i think for the rest of us it just seemed normal but being on here iv seen that the private and the american system through insurances seem to have more control over there notes and MRI and any treatment they have as i feel here we dont but we do pay for the NHS it comes out of our pay packet every month so we ought to be able to express are feelings.

Keep strong and take care x

[21angie]

thanks yes NHS is so busy hence thats why we wait so long its just so frustrating that you know your results will be listed on a computer somewhere and we the ones who are worried sick are last to know. Keep strong i am still fully mobile so i really feel for you thanks again, angie xx

[uk2]

Hi

I understand the waiting is awfull, iv been waiting nearly a year now for answers i went to the doctor in Jan with nerve pain and balance issues which i thought it was to do with a car crash i had last year, then in May i went to see the neuro he ordered a MRI ( NHS 12 week wait) i get worse go back to him he prescribes drugs as i cant walk by then he promises to essulate it goes on hloiday still really bad luckly my dovctor trys all sorts of meds and gets me back in shape but not enough to work i finaly have the MRI 3 week wait till i see him again so we are up to the 5th of september now get my results negative have bloods done and arranges to go up to st georges for the dfay for a LP and EMG that takes us up till now i have a repeat MRI of the pelvic region on friday and another three week wait so im looking at maybe seeing him in december if im lukey!!!

Im now walking with a stick and use a wheelchair for shopping as i cant walk more then a few feet now without pain.

I guess you are UK based.? Its so different then the private sector and the USA.

I pray you get some results soon.

Take Care

[Hope75]

yeah, I'm waiting on my MRI too.  Check out my profile on My Medhelp.  Anyway, I have been at this thing for over a year and now a new MRI may shed some light - we'll see!  DO NOT let them jerk you around.  I don't know how the health system is where you are, but just let them know you are going to go to the emergency room if you don't get the results today!  Sometimes, the squeaky wheel gets the oil:)

TAke care

[pins_n_needles]

That is ridiculous that you are having to wait so long, I would be climbing the walls. Call them everyday and throw a fit! Don't doubt your symptoms. Trust your self and stand up for your right to prompt medical attention.

[pins_n_needles]

That is ridiculous that you are having to wait so long, I would be climbing the walls. Call them everyday and throw a fit! Don't doubt your symptoms. Trust your self and stand up for your right to prompt medical attention.

[21angie]

thanks, i do get help my hubby is really helpful but i feel so guilty!! Wish you luck with your results i will post when i get my results you do the same  big hugs to you . angie xx

[mikemolly]

I hope you find out the results soon! I'm sorry your having so much pain.  :(  

Do you have any help with the children? My two notice when mummy's not feeling well and help out. The girls are 5 and 14 years old...quite a pair! My hubby works/lives in another state, so it's just us girls 4-5 days a week.

I'm waiting for my doctor to call with results. It's been over a month since my hours of office testing, about three weeks since the MRI and no call from them. I don't have a diagnosis yet- my symptoms started in 2001. Waiting is for the birds.

Big hugs...I hope you find some relief very soon.

Your in my thoughts and prayers,
Bethany

[21angie]

forgot to mention shaky fingers especially when i am trying to use computer mouse!!!

[21angie]

Thanks for your reply, i initially went to docs  dec 2006 with numb left big toe and lower back pain, suspected slipped disc had 6 weeks physio made back pain worse got referred for mri, mri showed ?syrinx,lesion ,dilation of central canal whatever that means!!  jan 2007 numbness now on both big toes oct2007 numbness on soles of feet.Had repeat mri brain and spine with contrast awaiting results. Get a lot of pins and needles at one point had right sided footdrop this has now corrected get strange sensation around right eye and have had a couple of cramps which made my toes go into strange positions but then self corrected. Sometimes i think i am imagining symptoms i am moody depressed but i have been off work since july, i am an picu nurse so they wont let me operate the machines on codeine. I tire easily but have 2 children my back pain is the worst symptom i have it grinds away at me. I have seen a nhs neuro who said i have right sided weakness and some sensory loss i am due to go back in jan2008 hopefully i will have mri results by then !!! thanks for listening kind regards angie x

[BondyinOz]

No worries :-)  I'm up late here in Australia due to, well you know hehe so many reasons, and saw your post. Well I hope your results come quickly and that they help you get a diagnosis.

Mel :-)

[21angie]

Thank you for your speedy reply, i have had back pain for a year now but i wasn't sure if this was a common symptom of ms or not, i am not diagnosed either i have had one scan without contrast which showed something but docs not sure what i am now awaiting results of last scan ,thanks again kind regards angie x

[Heather3418]

Yes...I waited for the results of my first brain MRI for a month.  I called the doctor's office almost everyday and asked for the results.  The doctor nurse said the results hadn't come back yet.  Guess where they were?  Underneath her piles and piles of paperwork.  Needless to say, I stopped going to that Neuro as soon as I received my diagnosis of MS.  I swear this is a true story.  I could not believe the torment this doctor's office put me through.  By the fourth week of calling, I was crying each time I called....

Now, your twitches can be a sign of MS, the burning and sore back can be from back problems not MS.  The numbness in your toes and coldness of your feet can be a number of things, certainly from uncontrolled blood sugar, resulting in poor curculation or other causes.  It does sound like a circulation problem in your feet.

I would really really push for the results of that MRI.  Do like I did, call up crying and upset.  Tell them you can't sleep and you fear that you are becoming depressed.  Maybe that will kick them in the butt, to get you the answers that you deserve.  That waiting is awful.  I've been where you are.

What is the reason your doctor did the MRI?  Are you having other symptoms that you didn't post here?  I am interested.  I want to be of some help, if I can be.  When is your next appointment with your Neuro?

Heather

[BondyinOz]

I'm still undiagnosed myself but I get the following of your symptoms:
* burning/sore back pain
* painless muscle twitches thighs, eyelid, hip,calf - I get them pretty much anywhere there's a muscle hehe (have even had a couple in my butt, although that's only happened on one or two occasions)

Some of my fingers and toes have been numb and also tingling at times. I've also gotten burning sensations on the soles of my feet.

Mel