Hi,
Just to keep my postings up to date I had my follow up MRI brain scan appointment with my neurologist on 4th August. My scan showed up what he termed as 'white areas'. Whether that is the same as lesions or scars I do not know perhaps someone may tell me. He said if I was 65 years old he would not be concerned as you get these white areas as part of the general ageing process. If I was 21 he would be extremely concerned, however as I am 45 he was moderatley concerned. He offered me the option of a Lumbar Puncture due to my recent episode of Transverse Myelitis as MS was an option.He did however stress if I did have MS it was a mild form and may never bother me again. But then followed that up with 'on the other hand you could have frequent attacks we will never know till it happens'!!!
He did however explain that an LP is not 100% guaranteed to say whether I have MS but 90% of people who do have MS show up some abnormalaties with a LP. However the 10% that are negative may still have MS. I have opted to have the test. The way I saw it was that if it comes back positive at least I know and if it it comes back negative I still could have it but there was less of a chance. Again I do not know if I am reading that right either. If it comes back posItive does it definately mean MS or could it be something else?
I have had a spinal block when I had a c section and he compared the process and pain to that. I asked him if he had ever had either and he said no so how can he tell me what it is like.
I now have to wait for the appointment for the LP.
He made an appointmet to see me in FOUR yes FOUR months time, as by then I would have had the LP and he would have the results. I am astonished at the length of time between appointments. Bloody NHS. I had to have a medical assessment at work today. This was done by a private doctor. She was astounded with the length of time between appointments.
As for my symptoms my right foot has still not returned to normal. The ball of my foot hurts like I have been shopping all day or I have been wearing high heels for far to long and my toes do not feel right. I have intense pins and needles randomly up my legs. I can be walking at the time and I have to do the breathing exercises I learnt when pregnant to get through the pain.
Anyway thats whats happening with me.
Hope everyone is well.
Thanks for the update. BTW, 15% of those who get LPs for MS testing are negative for abnormalities. I have had 2 LPs with 20 years between tests and I have never been positive for any abnormalities. I think it was wise of your doctor to tell you that the LP was not proof positive.
Have you had any evoked potential testing? I hope this is just a fluke. If it is MS, I pray that it is the mildest!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
To better answer your question, there is no proof that an LP will test positive for MS..it tests for antibodies, which are indicative of MS; however those same antibodies or Obands, as they are called (OligoClonal Bands) only show an infection is present, usually an autoimmune disease.
My mom has Obands and has Rhematoid Athritis. I do NOT have Obands, and I have a definative MS dx...by the way I was dx at the age of 38 and had many "white spots" which are usually lesions.....
However, lesions dont always mean MS,....lesions can come from migranes, prior infections, lots of things!
neither a positive LP or negative LP is conclusive....
Having had 2 of them, I can tell you that its very much like an epidural- and it really isnt all that horrible....the biggest difference is laying flat afterwards. You want to lay flat for at least 8 hours, totally flat- not on a pillow- in order to allow the fluid to redistribute and balance...and drinks lots of caffeine to ward off a headache!
More on LPs and MS if you search healthboards under those two words....
good luck!
Nikki
The neurologist I saw explained that if I had another attack like the one I just had lasting 12 - 13 weeks that I would automatically be dx with MS whether my LP was positive or negative.
He was impressed with my knowledge of the Mcdonald criteria. I explained I had been led to this message board when exploring my original symptoms when dx with pheripheral neuropathy which later turned out to be transverse myelitis. I had found a story from a lady who's symptoms were exactly the same as mine, she to was treated for PN before a MS dx was made. I think in my heart of hearts I was expecting him to mention MS and it did not come as such a shock as someone who perhaps would hear it out of the blue.
I also had an uncle with MS dx when he was 23 years of age. (My moms sister husband) Their daughter also has MS to. I watched my uncle go from being well and healthy to crutches, wheelchair, bed ridden, not being able to speak or feed himself. he eventually died at 57 from cancer as if he had not been through enough already. His daughter is now 50, she has what she describes as good days and bad days. She still works and leads a fairly active and normal life. therefor I know this disease is different for each person. I have seen at first hand two very different experiences.
When I look back at my own health issues. I have been normally very healthy. I have an underactive thyroid, it runs in the family, both my mom, sister and brother have it too. I had not had sick leave from work for 10 years and that is the gods honest truth. Quite alot of the things you can have with MS coincide with thyroid issues too. I also have quite bad headaches. usually over my left eye, I always felt as if my eye ball was about to explode. I have never been to the doctors about them I just take painkillers and lie in a dark room till its better. Perhaps they were MS related too.
I have not had evoked potential tests. I have read up on them and will ask neurologist at next appointment.
What I have had is a back x ray. A MRI of spine and an MRI of brain. I had a full neurological assessment too.
Anyway I have rambled on for long enough.
Hope everyone is well.
Its boiling hot in England today, always a pick you up when you are used to so much rain.
Best of the best to you.....
Just remember, a relapse can last only a few days up to a few months...so if you have any real issues, dont wait 10+ weeks to be diagnosed....get another opinon.
Its very possible that your eye problems could be MS related- and a good opthamologist should be able to determine if you have any swelling of the optic nerve...just something to look into.
Sounds like you are in good hands....stay cool!
Nikki
Next appointment came to see neurologist - 4th December 2009 !!!!!
Hopefully LP appointment will come soon.
Nikki your reply interested me when you mentioned the possible length of relapses. This Transverse myelitis episode literally knocked me of my feet for almost three months. In my head I pressumed they would always be that way - I never thought about them possibly lasting a matter of days - I always thought relapses were pretty awful and long. That actually cheers me up in a strange way.
However still have not got a definate dx yet so better not run before I can walk hopefully I will NEVER have anything like this again.
Hopefully you wont have anything like this again, Suzie. Yes, relapses can last only a few days....the definition of a relapse is a new, or reoccuring symtom which lasts more then 24 hours without stopping...
That means, you might have something happen, which you have had before- or you might have an entirely new symtom....but a symtom, usually only lasts a few hours or even minutes! And, its usually intermittent with MS...as in, it comes and goes.....a relapse does NOT come and go, and usually gets worse as the day goes on...usually resulting in having to call the Neuro and sometimes a round of IVSM (IV Steroids). Sometimes, though, the doctor wont order the steroids until it has persisted for a matter of days....
So, yes, relapses can be short and sweet and they can linger for months.
Keep us posted on your Specialist appt!
Nikki
Finally got my LP appointment through yesterday Sept 5th - for friday 11th September...talk about short notice. Not happy as it is the day of my brothers 40th birthday party, but if I cancel it I go back to the bottom of the waiting list. Thats how its done in England.
I was suprised to read in the NHS leaflet that came with my appointment that I should eat and drink normally before LP. It says the test takes 15 - 30 mins and I will be required to lie flat for 30 mins after then I am free to go. It advises to increase fluid intake after to decrease the chance of LP headache. Does this mean I am going to be fine to go to work on Monday 14th?
I though it was going to be a lot rougher ride than the leaflet makes out.
I had read some people had to lie flat for eight hours after !
After departing your Dr.'s office, I would go home and sit in a recliner or lie in bed just to be sure no LP Headaches started. I do not think you should be "out and about" after only 30 minutes. I would be sure to have some caffeine after the LP. I would also inquire about blood patches. (Ask them where you can get it done nearest to your home if needed.) Good Luck!!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Suzie, you should be fine to return to work the next day- BUT, I would lie flat most of the day after the test. If you read the stories here on healthboards, you will see that almost everyone who HAD to get the blood patch, or wound up with the headache, did too much after the test.
Having had 2 LPs, both times they made me lay flat for 1/2 hour before leaving the hospital, but then I was told to go home, drink caffeinated beverages, and stay flat on my back the rest of the day...
Both times I did what I was told and neither time did I have any problems. I went to work the next day with nothing more then a sore spot where the needle was inserted!
The test does only take 15-20 minutes....its over quickly. The anxiety of this test is so much worse then the actual test itself!
Mind you bearing in mind I had asked if I could change appointment as it was my brothers birthday party and being told I would have to go back to the bottom of waiting list if i did, after checking in at hospital and waiting half an hour was told the doctors secretary had not informed the doctor of my LP appointment and could I come back tuesday. I said no as both me and my partner had taken the day off work to be there and I was not happy. I had to wait from 11 o clock till 3:15 before another most apologetic doctor appeared to do it!
I lay on my side curled up into a ball. I was given a needle to numb the area, which did make me screw my eyes up a little bit as it did sting. Then a tube was inserted which I felt the pressure off but was not pain. I went all hot and felt a bit sick so I did my breathing exercises. In through the nose and out through the mouth. Great relaxation exercise to cope with pain learn't at childbirth. Felt nothing after that. Just lay there as still as possible. The doctor put a plaster on the needle area and I had to lie flat on my back for an hour after. I was advised to keep plaster on and keep area dry for twenty four hours, to rest and increase my fluid intake. Area is a bit sore and this morning I feel like I have been kicked in the back by a horse. Going to chill on sofa all day today.
You made it through! Congratulations. Yes, a day of couch napping will help you. By tomorrow you should feel yourself again. You might add some caffeine to your fluid intake. Some nice hot tea and some dark chocolates will help! (Well, for me- )
Stay positive. 08 December is not far off.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Hi everyone,
Just a quick update - I am still lurking around but have not posted.
I was supposed to see Neurologist on 8th December for any news on my LP. Received a letter today to cancel it - a new appointment to be made in 2010 !!!. I would have then waited 4 months between LP and seeing him. Lets hope no news is good news only that was not the case with brain scan. Still got numb right foot and toes but other than that I feel quite well, a couple of bad headaches and a bit buzzy now and again. Will let you know how I get on with appointment.
Susie.x.
Today I finally got my results from the LP I had in September 09.
My CSF was positive for oligoclonal bands, however they could not find the results from my blood which are also needed in the diagnosis. Either they have gone missing or they were not requested. I could have a repeat LP if I want but I am not going to bother. Now I just have to wait and see if I get another seperate episode that would confirm a def DX. I was rather hoping that the result would be negative then the transverse myelitis could be a one off. Now I feel as if there is a big cloud hanging over my head and I am just waiting for it to burst. I know it is possible for another attack to never occur.
Sorry to hear that Susie. Being positive for Obands, in the grand scheme of things, means absolutely nothing. You already know that....most everyone tests positive for them. ITs rare not to, actually.
All that means is that there is autoimmune disease present..and that, can be anything! LPs just dont tell us enough about MS. Ive had two- one to rule out meningitis and another to see if I have the Obands. Guess what? I dont have them, and yet I have over 50 lesions and all the symptoms and a positive MS dx. You cant win sometimes...
This disease is so individual, with everyone presenting differently, its a wait and see game. Try not to stress and worry yourself into an excaberation because you are right- you might never have another attack! And, that would be a good thing...
Keep us posted.
Hugs,
Nikki
In my 32 years of MS I have had 2 LPs 20 years apart. I have never had a positive LP. 15% of MSers do not have positive LPs. Consider that there are about 419,507 MSers in the US, that puts negative reports of LP at over 60,000 people and many MSers were diagnosed without a LP. The LP is not the final diagnosis, just another pit stop on the road to a diagnosis.
I hope you can muddle through to the next one. Keep up with your journal to track your health. I am sure you can handle whatever life throws your way!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
I know I now have to carry on and live my life otherwise worrying about something that may never happen could totally spoil it. It's the not knowing that is the difficult thing and I have read that on so many peoples posts on here. I guess there are alot of us in the same boat. Really I should feel as I did leading up to Christmas because nothing has really changed other than that I have the bands in my CSF. It's just that each little time I get a bit of numbness or pins and needles you think to yourself is it all about to start again? I got quite upset yesterday, perhaps I have been putting a brave face on for the last nine months. What I am most annoyed about is the NHS not doing the LP properly by not requesting or losing my blood results. Now I wish I had not had the procedure at all. I suppose I have to be thankful that I have only been left with numb toes on my right foot, as the neurologist explained yesterday some people do not make such a recovery; but then that set me off thinking if I get TM again perhaps I will not have such a good recovery.
Oh its just a vicious circle - too many things going around in my head.
Well I have just received my copy of a letter that the Neurologist has sent to my GP.
Here it is word for word.
I reviewed this lady in clinic today. She has pretty much fully recovered from her episode of Transverse Myelitis and is left with some numbness in her right foot. She has had no further episodes. Her lumbar puncture showed oligo-clonal bands in the CSF but unfortunately a matched serum sample was not sent with it. I have explained the results to Mrs C******** today. I have explained to her that stricltly speaking as she has had only one episode she does not fully fufill the diagnostic criteria for multiple sclerosis. however in light of her abnormal MRI brain scan which shows many lesions, the oligo-clonal bands in the CSF, despite no serum sample being sent and the TM, it is probable that she does have a mild form of MS and her risk of a second episode is great. I have arranged for Mrs C******** to be seen in clinic in 9 months time following a repeat MRI brain scan. (Unless of course she has another episode) I have also refered her case to the MS nurses.
Now I know alot of you are just going to love the word MILD.
I was a bit upset to read it in black and white but what will be will be and I will just have to see what happens, if anything, next.
(Well, for me-
)
