Dx today

[greaterexp]

I was just given my diagnosis today after a positive MRI, so I'm just beginning this adventure. I'll be seeing a neurologist soon and wondered if anyone has suggestions for intelligent questions to ask, as well as ways to deal with the "spinal headache" I'm sure to get after the spinal puncture. Thanks so much in advance. I'm brand new to this forum, by the way.

[jimeka]

Hi, sorry about your dx, it takes a while for it to sink in, I am still trying to come to terms with it after 6 years. If you have a definite dx of ms, why are you having a spinal tap as well? I refused to have one, because I had back spine surgery, but my decoy or said it wasn't necessary, they could tell more from the MRI than what a spinal tap Dan tell you. Hope it goes ok. Cheers Jimeka

[greaterexp in reply to jimeka]

My primary family practice nurse practitioner thought it would be the next step. I can't imagine the need, given the positive MRI. I understand some tests will be done to establish a baseline, but I sure hope the neurologist will not order a spinal.

Thanks so much for your reply. I'm sorry that anyone deals with this, but it is comforting to hear about others' experiences and have a place to ask questions.

[StacyHayward in reply to greaterexp]

If your MRI is pretty definitive, the spinal tap won't change anything. Try to avoid it. My spinal was negative and my MRI inconclusive. Still have MS. 16 years later my MRI is classic MS. Sometimes the tests don't show MS early on.

[cassielynn71 in reply to greaterexp]

I too was reluctant about the spinal. In the end my Neuro said the spinal wasn't conclusive either way. That it may or may not give us MS as the answer even though she is sure I have MS. That they rely more on the info from the MRI's.

Best of luck to you. I'm also newly (June 2016) diagnosed...

[greaterexp in reply to cassielynn71]

Thank you for your responses. I'm still waiting for preauthorization to see the neurologist, but it gives me time to investigate things more. If a CSF test is needed to confirm something for whatever reason, I'll do it. I'd just rather not!

[Juleigh21]

I was diagnosed 2 years ago. My neurologist left in June and the new neurologist is making me go through all the same test again.😡 He wants to make 100% sure that I "only" have MS. I think all this is a waste of time and $. I get a LP next week. I'd like to refuse but I'm running out of FMLA and I need a definitive diagnosis to get disability. Best way to avoid the headache is to do NOTHING afterwards. Recline in a chair and lay down. That's it. I tried to transfer wash from the washer to the dryer and my head hurt. My advice to you regarding being newly diagnosed is read info ONLY from well know sites. MSSA, the National MS society, the Cleveland Clinic, the Mayo Clinic. (I live in PA). Those are my go to sites for info regarding MS. If you call the National MS society they will send you all kinds of info and they could guide you on the best questions to ask at your appt. Start building a strong support system. The people who truly care about you will be loyal. And you'll probably be surprised by who stays and who goes! These past 2 yrs. have been quite a ride. I'm on my third DMT b/c I've had a few relapses. I have a new respect for myself. I'm a tougher cookie than I thought I was. I no longer worry too much about trivial crap- quit sweating the small stuff. Good luck to you greaterexp! I'll look for you on this site.

[Shelly36 in reply to Juleigh21]

I agree with you. My go to for info is Msaa, ms foundation, above ms and ms news today. I subscribed to them and they email me great info. Read as much as possible and you'll be fine. At least you won't be walking in the doc office blind.

Best of luck and we are always here to help each other out.

She'll

[greaterexp in reply to Shelly36]

Thanks for the encouragement and the websites. Both are greatly needed.

[purpletustin]

Hi, tough day, but given time you will gain strength. I'm attending a lecture series by Scripps Hospital in San Diego. The subject of spinal taps in diagnosis of MS was discussed by Neurologist and several in audience. We were told that spinals are not part of diagnosing anylonger. I spoke to another doc and he said same thing??

After 35 years of no diagnosis, I was finally told MS. This was after my sibling died after being so I'll for so long. He had all the red flags, but received rotten care.

I had spinal 7 years ago to help diagnose it. I never had the headache and was fine.

If you do indeed get spinal, assume you'll be fine! Avoid a self fulfilling prophecy of becoming ill.

Re questions...read learn understand all the 13 or so disease modifying drugs and therapies available. There's a wealth of knowledge in the group

Best to u.

[Judi4 in reply to purpletustin]

This is example what my MS specialist said last month when I saw him.

[erash]

I was lucky. No spinal headache. Stay lying flat as instructed. LPs aren't always done anymore. Are you certain you are having one? Anyway I hope no headaches for you.

[Fancy1959]

Greaterex, hello I'm Fancy1959. I would like to welcome you to this wonderful chat room. As you start this journey down MS's bumpy path I would like you to remember two things. Number 1, information is your friend. Number 2 , when it all becomes much, we are pnly a shout away.l

First of all in a quiet spot set down with the paper and pen handy listen to your body. Only you can make up a list how MS is affecting you personally. Do your hands tingle and feel numb. What about your feet, how do they feel? What about your walking and your balance, your eyes, etc? This first step is very personalized as MS attacks each of us differently

Now onto the spinal tap headache do everything you can to avoid this vicious little beast. Follow the doctors and techs advice very, very strictky. , if you have already been diagnosed do you really need to do a spinal tap? If they say yes, get ready.

Flat on your back for at least 24 hours. You are allowed to get up is to go to the bathroom. I had a laptop next to me and TV remote.ane I was a very good patient and even ate in a prone postion. It did not help or matter at all, the headache came. I couldn't do anything sitting or standing up . If I tried do anything up right I really got sick. My stomach was queasy and it ,felt like my head was going to explode. This lss/ed over 4 days. Yuck!

You are now part of our MS family. If you ask a question we will give you many different perspectives and answers to the same question. Therein lies the beauty of our chat room. One of the perspective be sure to hit home with you. So welcome and we would like to remind you that together we are stronger and invite you to become an MS warrior with us. Fight on MS Warrior your fight has just begun. Fight on!

[Eileeng]

I have been diagnosed for 6 years now with rrms. I've had ms for 58 yrs. I have never had a spinal tap. One doc in my mid thirties said he might've done it but I was getting better and didn't want me to go thru "it". Remember it's always your decision. It's your body.

[Jesmcd2 CommunityAmbassador]

Welcome to this monster they call MS that no one wants to be part of greaterexp . I was dx last Mar and they never did a spinal tap on me. The MRI'S were enough to see what they needed to see. And that was scary enough. My Dr said it was unnecessary. If you haven't had one, you have the right to ask if you really need it. We talk about pretty much anything and everything here so please feel free to jump in and ask. My very first post was how angry l am that this thing took over my life... but the anger is fading knowing l can reach out to friends here.

Also find an MS support group in your town they can be a wonderful help and have very supportive support system.

[greaterexp in reply to Jesmcd2]

Thank you for the reminder about the local support group. I wondered if that would be helpful or not, but I'm sure folks there could steer me in the right direction with local doctors and resources.

[1RiskyRich]

After my diagnosis I went on Techfidera and that failed. I switched to what the neurologist stated was the strongest and most aggressive Tysabri. That failed also. After following Dr. Burt's (Chicago, Illinois) results on HSCT, I went ahead it did it. BEST decision I ever made for myself in my 44 years on earth. My progression has stopped. Some of my symptoms have reversed, some are reversing & all have found relief. I was diagnosed April of 2014. I did HSCT 25 months after diagnosis. I wish I would have done it much sooner before the symptoms accumulated.

[Foots in reply to 1RiskyRich]

What's HSC?

[1RiskyRich in reply to Foots]

HSCT is Hematopoietic stem cell transplantation. I did it only because I followed Dr. Burt's results. The exact procedure he's been doing for over 10 years is finally getting approved in 2022. He started in 1996. The same exact procedure is already been approved in other countries & is now a standard for recently diagnosed people. For some reason some countries are having a hard time getting it FDA approved. It needs to be quick. I belong to quite a few social media sites that are MS related like this one & I can't seem to find members from any of the countries that use this as a standard protocol after diagnosis. You've just been diagnosed. It stops the progression & if done early enough, will reverse symptoms. I have a progress page on Facebook under Richie's MS Journey Check it out, like it for updates & definitely look into HSCT. Living is great but only when it's quality living.

[greaterexp in reply to 1RiskyRich]

Thank you for sharing your information. All this is so new and a bit bewildering. I have yet to see the neurologist, but want to be armed with as much info as I can going in for the first time. I'm so grateful for those who are willing to their stories so I can feel empowered to face doctors and the MS.

[Jesmcd2 CommunityAmbassador in reply to greaterexp]

The thing about this roller coaster ride greaterexp is that it affects everyone differently. Except the being exhausted on some days. l think that kicks everyone's butt. but as l found out from new friends on here, my MS support group and my Dr there are medications for that.l was dx Mar 15 and lm still learning all the in and outs of this monster. So plz feel free to ask or say what your feeling anytime.

[SepFromWisco in reply to 1RiskyRich]

Thanks for sharing your info Richie, looking forward to reading about your journey on FB as I am also considering HSCT. May be a little too early for someone just diagnosed unless theres definitive moderate-severe disease activity.

[lauranell2u]

As long as you lay down for a few days after, you won't get a headache. Those are the worst!! Unlike anything I've ever had, but as soon as I layed down, it quit hurting. Hang in there, we all just keep living. Good and bad days, just like "normal" people, our bad is just a little different. 😎

[akfunguy in reply to lauranell2u]

Amen

[greaterexp]

Thanks to you all! What a lovely bunch of people! I appreciate you taking your time to send reassurance.

I had what was apparently a CIS about 19 years ago. The MRI and CSF were negative at that time, but the symptoms took about 18 months to go away. I had a nasty headache following that LP, so though I try hard to never "borrow trouble," as my dad used to say, I reason that it may be likely. I followed the advice of the neurologist then and lay down for about 18 hours after that as much as possible (I had five kids!), but the headache happened anyway.

Thanks for the suggestion about the blood patch. I will certainly ask for it if needed. How long did wait to request the blood patch following the LP?

[CalfeeChick CommunityAmbassador]

That's good to hear, I will have LP on Oct 13 with fluoroscopy because of lower back fusion. I just changed to new neurologist after August 2 diagnosis. This new doctor said he would not of diagnosed MS based on my prior MRI, saying the MRI was pretty fuzzy. also having contrast MRI next Monday afternoon. Still having a hard time believing I really have the diagnosis of MS but willing to except it. New neurologist says my symptoms are in line with them in so I'm pretty sure I have it

[CalfeeChick CommunityAmbassador]

Welcome to our club. I'm fairly new here also having been here less than a month. Questions I asked my neurologist I was told were layperson questions. I just wanted to know about what medications I could get started on and how long it would take to try and have a remission if that was possible. Wanted to know if he was able to quantify which stage of MS I am at. He just told me about the lesions and said I should do more research on the computer. He is no longer my neurologist and have switch to one that I feel much more confident in.

[johnMSAA Partner]

Welcome to this My MSAA Community forum, greaterexp . Just know that everyone on here is with you at the start of your MS journey.

To answer your question about "intelligent questions to ask" your neurologist as someone who is newly diagnosed, the best place to start would be with MSAA's memory aid acronym and program, S.E.A.R.C.H.! Standing for Safety / Effectiveness / Access / Risks / Convenience / Health Outcomes, with the SEARCH toolkit you get a wallet-sized reference card and workbook to bring with you to any doc appointment.

We also have a brand-new free webinar on How To Search For the Right MS Therapy For You that is open for registration now (direct link is on the homepage of this My MSAA Community!).

To download or order these and many more SEARCH resources and to register for our upcoming free SEARCH webinar, go to:

mymsaa.org/search

Hope this and the great replies to your post help get you started!

- John, MSAA

[greaterexp in reply to johnMSAA]

Thanks, John, for you reply. It's overwhelming to have to suddenly make so many decisions, and being armed with information is comforting. I'll continue to utilize the MSAA website for help.

[beadowns in reply to greaterexp]

Hi, Greaterexp ~ I only signed up, after being with MSAA since about 1989. Yeah, long time. I read all the posts to get a feel for the site, and agree wholeheartedly with most of what was written: List your symptoms, listen to instructions (my LP took moments, I kept on my back for the 1/2 hr. until the nurse came in and told me it was O.K. to get up and no headache!), read all MS-approved info (.org and .edu are most reliable sources). Some of my two-cents-worth: Take time making decisions since MS is a lifetime commitment, and not as nearly as devastating as some, such as Lupus and Fibromyalgia, both of which can have debilitating pain; just as there are numerous headache relievers available such as aspirin, acetemynophen (Tylenol), Aleve, etc., one size does not fit all; what works for one may not work for you, but there are oodles of choices in your Dr.'s magic bag and be sure to give feedback to your Dr. when you are put on one; as symptoms change/go away/intensify, note all that to show your Dr., NOT ALL ISSUES are MS-related. There are other symptoms that could be easily explained or relieved by other means. I was dx'd with primary progressive multiple sclerosis, and in 1989 there were no DMT (disease modifying treatment) for either RRMS or PPMS. Today, it's a different story for RRMS, only a few for PPMS. I've never had a remission, but then I've never had an exacerbation, either. My "ride" has been a slow slide downward since my hysterectomy in 1984 which is what began my MS dx. Prior to being put under general anesthesia (known by some to dampen the CNS, where the MS resides, as well as the spinal cord, which is why an LP is often used to confirm spinal involvement). It took five years of my going to Dr.s telling them, "I can left my left knee this high, right knee only this high," "Why?" None could give me an answer until my chiropractor saw me walking and swinging my right leg due to having foot drop and not wanting to catch my shoe on carpet. After numerous adjustments, he sent me to a neurosurgeon who dx'd me with PPMS. Looking back over my original symptoms - hand numbness, balance, inability to walk, hearing impairment, lack of bladder/bowel control, among others, the symptoms have become more intense, but still not painful, just sorta there in my muscles. Bottom line for me is, "If I have to have a progressive, chronic disease, I'm grateful it's MS!"

Best of luck to you, Greaterexp, and may God Bless,

Bea

[Lucille3]

Listen to the dr and stay flat in ur back after the spinal tap. Have someone w you to bring u drinks ice food ect...for me the third day was the worst almost a week before I started to feel a bit better. I received a massage 2 weeks after the spinal it was so helpful.

[greaterexp in reply to Lucille3]

Thanks for the suggestions. I have the name of an excellent massage therapist and can try that if needed.

[akfunguy]

Good Luck and find ways to enjoy the ride!!! I was diagnosed with MS in 2009 and my wife was diagnosed in 1999 (seems we bought the wrong lottery ticket). Be honest with your doctor and find someone you can talk to on bad days. After that just live and enjoy your life. And remember, Remember, they call it Practicing Medicine because the doctors don't all understand MS any better than the rest of us...

[greaterexp in reply to akfunguy]

My goodness! What are the odds that two in the same family could have MS?! Thank you taking time to respond. I do so very much enjoy life and plan to continue. Getting the diagnosis was more relief than anything; once we have that, we can start treating it and learning ways to adapt. I'm really not worried, and am grateful that it's "just MS"!

[Foots]

Hi I'm foots and I found out that my back pain meds help with my headaches. It also helped with my toothache. The Doctor said not a word when I spoke on it.

[greaterexp in reply to Foots]

I'm not sure what meds you use for your back, but I have Excedrin-type tabs and muscle relaxers, though I still pray I don't have to have the LP.

[Kj9681]

I join all of the others when I say that I'm sorry to be hearing about your dx.

Believing in God, Jesus, and Holy Spirit is the only reason why I make it and stay (mostly) positive.

Welcome to the fight.

Blessings

[greaterexp in reply to Kj9681]

God is in control, so I have no worries.

[Kj9681 in reply to greaterexp]

Indeed He is. Amen

[Eleyne92]

Welcome, greaterexp.

In regards to the LP, and how to handle the headache. You might not get one. As the others have said, stay on your back for at least 24 hours. I've had three procedures and the first 2 were non-issues. Somewhere along the line though with the third one, I forgot it was a spinal procedure, and the hospital staff didn't say anything either. OMG! I was miserable for three days before the main neuro at the clinic came to check on me. His orders ... lots of Mountain Dew and flat on my back. There's something about caffeine and faster healing after a spinal procedure. It worked. I was up and mostly headache free after a day and a half.

Good luck with yours ...

[greaterexp]

Great idea. I think the closest specialist is about 4 hours away. Not too bad!

[greaterexp]

I'll learn from your experience and call sooner rather than later if a headache results from LP. Thank you so much.

[JeenaRae]

Hi Greaterexp

Welcome to the family! I had a positive MRI so I did not have a spinal. I'm not sure why it's necessary if your MRI was indeed positive but if their doing it to truly be definitive then my suggestion from those who I know have had is to truly rest after laying flat.

As for questions, I say that we know are bodies best. Drs. and keeping track of the symptoms you had and are having when you see your neuro is key. Don't be afraid to ask how long they have worked with ms patients and if they are up to date on what is going wit ms studies a medications.

I also found that reading up on different types of ms and drugs have been helpful in helping my relationship with my drs work well.

As always we're here as sounding boards to listen when you need it.

Best wishes

[greaterexp in reply to JeenaRae]

I am a compliant person by nature, but want to know I'm trusting the right people. I'm so glad to have found this group to get more information from folks who have dealt with this all first hand. I plan to write down my questions ahead of the first visit, and I don't think I'll be shy in questioning anything if it doesn't seem right.

I can't tell you all how grateful I am for your help and encouragement! What a gift you are!

[Jesmcd2 CommunityAmbassador in reply to greaterexp]

Great ldea greaterexp when l went in the 1st time l didn't have anything written down. I was in shock when he told me. I only had 1 question for him and interrupted him to ask if it's hereditary. I have 3 beautiful daughters and 2 amazing grandchildren. And he told me no. Which makes sense in my case, no one in my family has ever had MS before.

[greaterexp in reply to Jesmcd2]

I'm grateful to have had nearly 20 years since the CIS to raise my kids. I'd rather have had no MS, but at least my kids are adults now, most with children of their own. I can't imagine the difficulties of having small children while facing this.

[Papamichael]

After some MRIs and evoked potential tests, my neurologist suggested a spinal tap to help to try to pin down my problem. The spinal tap did confirm his thoughts that I did have MS. Like you, I was concerned about the test, including a headache as a side effect. To my pleasant surprise, I did not get a headache or suffer any other side effect. I credit this to the skill of my physician. As for the 'spinal headache' that you are "sure to get," my advice to you is don't be so sure, and you may be pleasantly surprised. Good luck with the test and your journey as you learn more about MS than you ever wanted to know! And above all, keep as positive an attitude as you can; remember you are not alone.

Papamichael

[CalfeeChick CommunityAmbassador]

Welcome to the group. I just had spinal puncture last week. They recommend drinking lots of fluids, water. Take it real easy for a day or two. Lay down as much as possible during that time. I had slight headache, took 2 Tylenol and it was gone.

Hope that helps, i'm still trying to think of intelligent questions.. Lynn

[CalfeeChick CommunityAmbassador]

Haven't responded to you for a little while, I ended up with the MS director at the UCSF MS clinic in San Francisco great doctor feels so much more support and confidence in this man. Had to start all over with MRIs and a spinal tap but I've come through those and still kicking. Now it's waiting to get all the results from him which will not be until December because he is booked solid ☹️️😄🙃

[cnichols]

I didn't have a lumbar puncture, I was diagnosed off of MRI. There is a lot to take in, make sure you have a list with all your symptoms, if you can put date ranges. MSAA has a lending library that you can borrow books from. My older brother had MS so I knew a lot when I got diagnosed. I did read "MS for Dummies ", it had good in. Take it one step at a time, positive attitude goes along way with this battle.💕💕