Ok so I was told last week that I have ms. My doctor will not treat me for it unless I get a spinal tap. Why is he insisting on doing one. I thought that the MRI showing my lesions would be all I needed. On July 12, I went numb and tingly all over my body, now it's more sporadic all over, but constant in my hands and fingers. The second week that I had this I lost muscle memory in my hands and fingers. I couldn't type or change my grandsons diapers. I have gotten it back but some days it's the same with not being able to do things. Is this normal with M.S.? Is a flare up suppose to last this long? I'm more scared of getting the tap done then living with the disease at this point in time. I need some advice from some one who has this, and some info on what are my options......
Going out on a limb, knowing very little about you.
Could be that this is your ONLY MRI and you need 2 sources to help Dx.
If you had 2 different MRI done about say 6 months apart with changes on them, then that would be enough.
That said.......ask him WHY he is insisting on the LP (spinal tap) when its only positive for about 75-80% of MS patients. There are many on here who are Dx but have no O bands (which is what they are looking for).
The tap is not as bad as the mind conjures it up to be. I didn't even know mine was done until they were done with it. It takes less than 20 minutes and can be done in your neuro's office, which mine was. I was Dx long before I had my LP. They are now using LP to detect antibodies for the MS drug that I take, so glad I got over my fear of it.
I would ask how long he wants to wait to do another MRi if you really don't want the LP only because it still may not make him happy. MS is a slow moving train so you are not going to curl up and die without meds right away.
You, if you have MS, will probably experience symptoms off and on, some have none, some have lots, it's so individual. Some last a long time, some go away the same day. Flares, of course, usually last more than 2 days in duration (see the "most viewed health pages" to the right of these posts, there is a ton of good information there you can read up on, plus the national ms org website has even more information for you. You'll wind up dreaming about it!
It very well could be that your health insurance is demanding a second diagnostic be run before they will agree to cover the cost of treatment. The fact that only 3/4 of patients having a lumbar puncture have positive results, does not deter insurance companies from wanting to know that enough other diseases have been ruled out before accepting this diagnosis. I got the nod confirming my MS despite a normal LP.
I would have a long talk with your neurologist, and ask him why he is insisting. His answer may be all you need to hear. Do not procrastinate, I deteriorated very quickly, and had progressed quite far before I began treatment. No one was stalling, but I had no definate flares until 2 years in, but had landed in a wheelchair less than a year after diagnose. It can progress with some speed. I mean not to frighten, but encourage you to learn as much as you can about your disease. Ask tons of questions as often as possible, and never take anything for granted. Your neurologist may just be a cautious one. As he gets to know you better he then can treat you with greater accuracy.
Ask him to have a VEP test instead of the spinal tap. Research has shown the VEP to be alot more accurate than the puncture and it cost less and they are not sticking a needle into your spine. MY VEP lead to my diagnosis and have been on meds for the last 3 years.
They can give you a valium IV for a spinal tap. That is the only way I would agree to one. I woke up after it was over. I am not sure why more Doctors do not offer it. They have sedation dentistry why not LPs? Mine would not diagnose me with out it and I had 4 positive MRIs, VEP, etc.
Every DR is different. My Neuro hates the LP test. It wasnt till I went to another DR for a 2nd opinion did I get a LP test. It came back normal and the test was very rough on my body. Took me days to recover fully. The stress of the test caused a short MS relapse with me.
In my opinion, if your doctor diagnosed you with MS as you said, he shouldn't have done so if all the testing wasn't completed. Talk about giving the patient more fear and worry! But even so, believe me, you want to be absolutely sure you're being treated for the right thing. There are many diseases out there that give lesions on the brain, in addition to other diseases mimicking MS, so it's best to do all and every test possible to rule out other diseases before MS treatment is given.
To get diagnosed with MS with just a brain MRI wouldnt be a wise decision and could possibly harm you. When looking for MS, get every test that is offered to you, if your insurance covers it or you can afford it. And the LP is nothing compared to living with this disease! You might have some pain in your lower spine and have a spinal headache for 4 days to a week, but I'd rather have that ANY DAY compared to living in chronic pain for the last 25 years like I have, on top of cognitive issues and other problems.
Also, to prepare you for the spinal tap (LP), without going into a deep explanation, drink plenty of caffeinated drinks the day before and the day after the procedure. Many people will agree and tell you the same. In addition, after the procedure is over, lay flat on your back for at least 8 hours and definitely listen to the aftercare instructions, no matter how good you feel. I felt great and regretted what I did later, and I'm sure the reason why is because I never felt the needle, so I figured everything would be fine and boy was I wrong! Rest as much as you can, flat on your back, and make sure your head is flat as well. You want a pillow? Sure thing! Hug one, but don't put it underneath your body! :-)
Last but not least, as far as flare-ups are concerned, they can last months! The longest one I ever had was 3.5 months, but I know many people who had them much longer. They can also only last a few days as well, so it's not always going to be the same for every flare-up. The best thing you can do during that time is to rest, have someone prepare you healthy meals, depending on how bad you feel, and hoping you have someone to do so, and take a multivitamin which I always recommend everyone to take everyday, anyway. Also, call your MS Specialist/Neuro and never assume it's an MS flare-up. Remember, many things mimic this disease and if you experience numbness out of the blue, we should never assume anything, because it could be even worse such as a heart attack or stroke.
Would have sworn I left a response here over the weekend…. Apparently I’m not a reliable witness for myself.
You commented, “I have gotten it back but some days it's the same with not being able to do things.”
And asked, “Is this normal with M.S.?”
That is entirely possible - even probable - with MS. After the inflammation of a flare subsides your body works to repair damage to the myelin. The detour cones for this construction project will sometimes stay up for a long time.
Even when the job is ‘finished’ it isn’t like sending signals down a brand spanking new road. It’s more like extensive patching was done to repair major pothole damage. Bumps, dips and seams exist even when traffic starts moving again. Heavy load demands (fatigue or stress) and temperature changes (environmental, exercise induced or from fevers) can disrupt the repairs and jam up traffic. You know how quickly having just one lane down can back things up.
You asked, “Is a flare up suppose to last this long?”
If we were allowed to cast votes, mine would be NO! - but we can’t…… so sadly,
I have to suggest that ‘supposed to’ doesn’t mean a lot to individuals with MS and a flare certainly CAN last this long (for the reason given above). Sadder still, lingering flare symptoms must sometimes be incorporated into what becomes known as the ‘new normal’. I don’t suggest you go there just yet!
There are drugs that can help diminish the sensations you describe and carefully paced therapy from a PT familiar with MS might help you become less encumbered by these hanger-on symptoms. Learning to pace your activity and being aware of the things that raise you core body temperature should also help even things out. I hope your neuro’s refusal to treat hasn’t extended to this type of help.
Frankly, none of us HAVE time for MS. The disease is capable of demanding we MAKE time for it though and when it does, it uses language that is loud and strong and takes a person by surprise. In fact, that uncertainty is the most frustrating (even fear producing) aspect of the disease for many people. That’s one reason so many of us here are proactive about making the changes we can toward living a healthier lifestyle.
You state, “I'm more scared of getting the tap done then living with the disease at this point in time. I need some advice from some one who has this, and some info on what are my options.”
This has been covered by others very well so I don’t really have much to add. Please listen to what everyone has shared.
I have a question for you though. You don’t sound real convinced of the diagnosis yourself. Are you? It could be that you’d benefit more from a second opinion than a LP. At the very least it seems you need to ask for a sit-down-talk-it-out with your doc to be sure you each understand what the other is thinking. Otherwise, I don’t see how it’s possible to proceed in any direction with confidence.
I don’t want to forget to add a welcome to our MedHelp MS community. There’s always someone here willing to share the experience of living with MS - even on weekends when an empty nest feeling can start to creep in. I hope you’ll choose to stick around, ask questions and share the experiences this journey brings your way.
As of the flare ups lasting a long time.....they vary from person to person. Part of mine have become the new normal. Nureo told me that I will probably always have numbness, pain, fatigue, ect and that I will have to learn to deal with it the symptoms the best I can. I tried pain and fatigue drugs. They got to the point where they did not work very well and made me feel off. So I stopped taking them.(Only on Avonex now). Somedays are better than others. I have learned to to be able to do what I can, but not over doing it and making my symptoms worse. Figuring out what my body could do and NOT do was the most important aspect for me.
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