MS Suspected

[yellowrose]

OK got back from the neurologist and even though the MRI showed only one brain lesions, he said that with all the other symptoms I was having he feels that I need a lumbar puncture to test spinal fluid.

I am still trying to decide whether or not to have it done.

I should have asked the dr but I didn't think of the questions until I had already left.

1. What would be done differently if it was MS along with SLE & SS

2. If nothing then why ask for more dx'es?

Still having very bad tremors in hands it is really noticeable. My mental and memory problems are still there. It took me almost five minutes the other day to remember how to spell earlier. Have been on vacation this week so I have gotten much needed rest and go to the Rheumy on the 20th. I'll have to make a list of things I forget to ask.

Anyone have any ideas on this? Thanks for everyones support

[Lily]

(((((((((Yellowrose)))))))))

I've had a spinal and it was more to rule out MS and help rule in SLE.

However even with SLE they will do a spinal if you are having CNS related issues to make sure there's no underlying fungal or bacteria infection affecting things, because if there is they can treat it, rather than just pump you up with more Lupie drugs. Did he specifically say he suspected MS, do you know what he's ordered as far as them checking the spinal fluid? It may be that he's also looking at other things? It would be worth finding out.

If you do have MS then treatments are different to Lupus so that's something to consider. I dont know what the treatments are and how they would get along with your Lupus meds but I'm sure someone around here may know that.

The thought of a spinal was far worse than the actual procedure for me. The procedure was quick, painless after the numbing needle and that was just a sting, and in fact I had to ask him if that was it had he finished and was he kidding when he said yes, I'm done :D Drinking lots of water and lying flat afterwards for as long as possible is essential to abort a spinal headache. I'd even advise really taking it easy the next day as well because when I got up and started moving around I started to get a headache and it was relieved by going back to bed. I was fine in a couple days and suffered no ill effects.

I'm glad you managed to get some rest and had a break. Good luck and hugs to you Yellowrose.

love
Lily

[Melody2]

Hi Yellowrose,

They suspected MS for me as well before I was diagnosed with lupus...and my rheumy still thinks I may have lupoid sclerosis. Like Lily, I had a spinal tap as well and found the thought of it much more upsetting than the actual procedure. It was not a big deal in the end. As Lily said be sure to lay flat afterwards, I think they have you lay there after the procedure for at least a half hour. When you get home just remain lying down. I had to lie down for a few days as when I stood up I started to get a headache. But after a week I had no indication that any procedure had been done at all. And I can rest easier knowing definitively whether or not I have MS...it apperas I don't have multiple sclerosis after all, though possibly lupoid sclerosis which isn't supposed to be as bad, so I'm told. Just make sure you have a skilled doctor and then don't worry about it. Lupus and MS do have different treatments so it's good to determine which is the culprit.

Good luck,
Melody :luck:

[MariaK]

Hi Yellowrose,
Very good advice given already! Any infective cause in your CSF (cerebrospinal fluid) can be ruled out. They are also looking for a certain type of 'band' or protein which indicates MS (I work as a nurse on neuro so I help out with lumbar punctures a lot). One other thing not mentioned is that they actually check for 'opening pressures' at the beginning of the procedure. This means they are checking to see whether the lesion found is causing any problems with flow of your CSF flowing throughout your brain and spinal cord. CSF nourishes and hydrates the brain and spinal cord, as well as other things. Raised pressure can be treated if need be, and I am guessing your symptoms led the neurologist wanting to find out if your symptoms are pressure related.
I am also guessing that they want to get your treatment right as well.
I am sorry if this comes across as information overload! Please let me know how you get on.
Best wishes,
Maria :nurse:

[yellowrose]

Hi ALl,The results are in for the Spinal tap,One nurde salled and ar she was going over ut she foubd two thing that ws abnirnak IGG elevated and something lse, I asked fri the dr to call me back and to fax my results to ne. Needless to saly neither happened. Another nurse called and sakd all tests were normal.

All I know that that I an not normal, I back aches all the time along wit the ither normal thing s we go thru.

As you can see, my mind know that it wabts to say vut ny fingers win;t relate.

I cab't continue like this much longerm don't know if they are open on holdiday.

I didn't use spell check because I want someone to see what is happening ot me

Thanks

[Lily]

(((((((((((((Yellowrose)))))))))

I woudnt pay too much attention to what any nurse said until I heard it myself from the doctor, when is your follow-up with him?

I know how frustrating it is waiting for them to determine what's going on. One of my samples had to be sent away for testing and seemed to take forever to come back, it wasnt easy waiting :hugbetter: They also have to compare the spinal tap results with bloods taken at the time and take into consideration findings on your MRI - so it definitely needs an expert eye for that, not the opinion of a nurse reading one printout.

Hang in there. You are obviously unwell right now and I hope you get some answers and solutions soon.

Sending gentle hugs,

love
Lily

[yellowrose]

hi I seem better buy ard still hading probelms with coordinatioms. I g obakc to the NEU tomorroe at 10:30

The hoptsl that I had the tap done wanted me to coome cabe for anothe blood patch, no way will I ebe r go back there again. I drove myself ther and thisis what I AM like ever sence I letf

Any ideas? I need help, I can;t work oy anyrging

[Lily]

Hi Yellowrose,

Good luck with your appt tomorrow. Why do they want you to go back for <another> blood patch are you still leaking spinal fluid? If so then its an emergency and you need to get to a ER department NOW! Call 911 we are concerned about you.

I wasnt even aware you had a blood patch after the spinal in the first place? and you really need an ambulance if thats the case not driving yourself? Can a neighbour or someone take you, you should not be driving right now. Have you been taking it easy, because you really need to hun?

love
Lily

[yellowrose]

I think thay the dr that orfered the oringinal tip knows a mistahe was made snice I tefuse to go back to hi,. I am going to another one I saw last eek. The first one called after the 3nd callef for my records. They said if I was stll havingpain in my lower back and any headache them I needed another patch/

I have not driven since the b;oos patch. Either my mom or sone has been availablr for mt to lean pn.

Mu mom and my 25 yr old son lives with me so I zdon't really habe anythong yo do but rest.

My reg dr sent me ot a neuro and sd that he didn't thn=ink I was immediately going to havw a stroke but he wanted me seen immemdiatly

My bigggest problem next to my hralth id my job, I have been out for two weeks adn know I will be out longer. I am not finainally prepared for thid. My mom is on SS so my income is the only thing i have.

Sorry to rable on and apalogize for the sspelling. I takes all I have to get on the boars much less correcr mu midtakes.

Hope twomorrow goes ell

[Lily]

(((((((((((Yellowrose))))))))

Oh dear what a mess :hugbetter:

I'm glad you have someone there to drive you to your appointments etc. and that you are able to get some rest, but I understand your wanting to get this sorted out. Not only for going back to work but because you really need to know what's going on so they can treat it.

I'll try and get one of the other mods to look in on your work situation and possibly offer some suggestions, as you are in the States I presume? Besides that I dont know a lot about the system over there.

And stop apologising :P I understand your need and we will try and support you through this.

Good luck tomorrow and for now take care :flowers: :hugbetter:

love
Lily

[yellowrose]

Thanks Lillyy, II just got back from the neuro and he did amother blood patch and, told me thst O wa taking too mny meds and has so far added 2 more to th elist. Keppra and Klonapam(sp).

He keeps telling me that a;; O have to dp is get a good nigt sleep and wake up withouy any pain and feel good. Yeahrighy I haven't done thay in yeares. I wouldn't know what to do if i fif.

I'm not real comfortablw with him. I am trying to get my primary care, rh and neuro to work together and fix me. Everything was fine untuil I had the initial lumbar puncture and now I can't do anything, type (as you cal all see) drive, take cared of the bills wjcih are probably going to send me to bankruptcy court soon.

I am going to caall the disablity agency and see what I need to start doing and also thinkiong bour a lawyer for the hospital that has messed me up. I was sin euntul I went to see them and got the LP

I am in th eUS I live in Nashville Tenneessee and have got to get som einfo about this as they can't hold my job foever

Thanks for everyone prayers and support I rea;;y appreciate it
Barb

[raggedyann1]

Yellowrose,

I am going to try and help you with the job financial part of things. I have been following your posts but knew Lily is far more expert in this type of medical treatment/testing.

If you want to file medical malpractice against the doctor/hospital that caused your problem do some research to find a top-notch attorney that specializes in malpractice. The consultation is usually free in this area of law and most of the time they will work for a % of your award. Because of this they are picky about clients they will accept but the flip side is they work very hard for you when they take you on as a client.

First of all how many people are employed by the company you work for?
Do you have private disability insurance thru your job?
Does your state have a short term disability insurance program? I know that California does but I think there are only a couple other states that do.

The type of programs and help will partly depend on your answers to the above so I will wait for your response before diving in with more information.

Take care,
Karen

[yellowrose]

Thanky You TaggedyAnn

Th company I work for is under100 employees, I was initaiily offered short and long term disability aat time od hire but declined due to cist.

We also don't have a shor term disability in Tennessee. unfirtunately.


Thanks for anyhelp

[raggedyann1]

Yellowrose,

There are enough employees that you qualify for FMLA. This means if you tell your employer you are using your FMLA time they cannot fire you for absentism. You may take up to 13 weeks per year and it doesn't need to be all at once. This doesn't help with money but it helps to save your job.

You are also eligible for Cobra, which costs money, but is usually worth it if you can squeeze it out. That would be if your doctor determines that you should no longer be working. But from the sounds of it medicaid may be the better route for you. Also check all the food banks in your area and find out what other govt and private programs you are eligible for. These can help you survive while waiting for ssi or ssdi. you may even be able to get food stamps and medicaid straight away it depends how your state runs the programs.

Like I already suggested find a malpractice attorney for your bungled lumbar tap.

Any other questions feel free to pm me and I will try to help the best I can.

Take care,
Karen

[yellowrose]

Thank you so much for th e help. This gives me a starting poiny. I feel very comfortable with my job beiing held as they have agreed to continue to pay me while i am out. I am not usre about what attorney ti contact since the hospotat is one of Nashville's finest teachinng facailities here, Vanderbilt.

I hav been adviised to wait and see if I do get better but I feek the longer I wait the worst it will get and if I ttry to work part time that will work against me

ANy ideas?

:blink:

[raggedyann1]

Yellowrose,

Even the best doctors and hospitals bungle things. Often in a case like this once an attorney contacts them they get their malpractice insurance to pay what they consider a reasonable amount. Very few malpractice cases actually end up in a court room. It won't hurt to call some attorneys listed in your phone book under malpractice.

Karen

[yellowrose]

Thanks, I am feeling better now, I went back and had another blood patch that I thik has stopped all the leakage. I am working hard on my motor skills, practicing typing and checking and rechecking. I go back to Neuo Tues. He says all I need is to get a good nights sleep and wake up without soreness and rested. I don't think I have done that in over 10 years.

I contacted an attorney Fridau but was told that was medical negligence and not malpractice and only certain atty's do those. I am starting Mondya to try and fin one.

Thanks so much for everyones help and support

[Lily]

((((((((((Yellowrose))))))))

Well your typing has improved and I'm glad that you will be seeing the Neuro next week - good luck.

:( 10 yrs is a long time to feel like this and not get a good nights sleep - it has profound effects on me not being rested, it really makes me so much worse. Functioning when rested is becoming more and more of a challenge these days but if I dont sleep then everyone knows about it.

Hang in there and lets hope this final blood patch actually does the trick :flowers: :hugbetter:

love
Lily