Testing Results

Hello all, after many tests, waiting 6 months and having even more testing done these are the results.

1. There are 20+ white spots on my brain. No changes in shape, or size. No new spots by comparison with 10-13-16 MRI's.

2. My nerve conduction tests all fall within normal ranges and show no abnormalities.

3. My spinal fluid is clear and show no markers for MS.

4. Both my Cervical and Thoracic spine show major changes from my Osteoarthritis. MRI shows T2-T5 lesion and definite changes in nerve signals from that area. It's possible all of my symptoms are from the spinal lesion!

(Really!)

We looked at MRI's and reports. Had discussion between Dr. myself, my husband and 2 observing doctor students. Dr.G. doesn't feel there is sufficient change or proof in brain to diagnose MS. He feels it will eventually develop into MS or possibly some other neurological disease. He does feel the spinal lesion is probably MS. Until it progresses, he will keep my diagnosis as Possible MS. We discussed Disease Modifying drug therapies and/or symptomatic drug treatment. He was willing to start me on DMT's provided I passed tests for prescribing. We decided on a med that will increase my alertness, fight the brain fog and fatigue. So that's where I am. Still waiting for definite DX. My own research does tell me that some people have symptoms for years before the definite DX. Waiting for insurance approval for the new med which is Modafinil. I've been in a very funky mood in that I anticipated a definitive DX.

Do others experience these highs and lows and lengthy time before getting a Diagnosis?

38 Replies

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  • Sounds a lot like my initial diagnosis. Clear spinal. Inconclusive MRI and a "may turn into MS" conclusion.

    My advice is document very closely everything you experience. My neuro gave me a MS diagnosis ten months later based on increased symptoms.

    I think you are wise to be starting a DMT. Studies show it's the best way to slow this disease down.

    Good luck with everything.

  • Not starting DMT's, just something to help me with the fog and focus.. My right knee buckled when he was having me walk to check my balance, so that's good he saw that then and there.

  • CalfeeChick I'm sure you are so frustrated! Is it or isn't it? I know you just want them to make up their mind. Several people have mentioned that they waited years while the drs. just kept waiting to diagnoses them. If they are willing to start you on a DMT, they must be pretty sure that it's MS. Hoping the modafinil works for you. It makes me feel like I've had 10 cups of coffee. I rarely take it.

  • I am right there with you. Waiting for a call to schedule my full MRI with/without contrast. It is a roller coaster ride I never thought I'd ever have to get at ticket for. It's very hard. I am happy with my new neurologist and I think I can work with her, no matter what my MRI's say. Honestly though, I'm trying not to think very much about not getting the definite diagnosis. If I must stay at the park, I at least want off this roller coaster.

  • I've had 2 plain MRI's, then last Oct. MRI's of brain, cervical & thoracic spine with and without contrast, then MRI's again Mar. 21 with and without contrast to be able to check for changes. Since last June 28, I've had 8 MRI's, 35 vials of blood, x-rays, spinal tap, nerve conduction legs only, then full body nerve conduction tests (a 5hr. appt.) Electrodes from scalp to feet. That was definitely an E ticket ride!

  • I did the brain electrodes test, that was interesting! I had some blip at the end when my body had a jerk my body does daily but nothing significant.

    Nerve conduction (they thought I had carpal tunnel to explain weakness). Negative.

    So many vials of blood. So many. Once it was several feet long of stickers for my tubes, I was a little nervous about how much blood they were taking that day!

    I had a bubble echo cardiogram (that was interesting!).

    I had a brain MRI last March but I guess they weren't looking for MS and I'm not totally sure what MRI they did but it was negative.

    This will be my first full MRI with/without contrast and looking specifically for MS. I'm so nervous.

    I would think because they are prescribing you meds, they are pretty sure yours is MS or MS is causing some of your symptoms?

  • I have to ask you are you satisfied with this doctor. The one doctor I went to my PCP he did blood test but not as many as you. I had to say to this doctor I either have M.S. or

    Lime disease and asked him how do I get diagnose this dr. said to me don't jump to conclusions and I just said I need to know what this is. After they took the MRI i got another doctor which was a neurologist he took the spinal tap which both of them showed I had MS. I am telling you this so if you want to go to enother doctor take all those test results and find another doctor You have the right to do That I just don't want you to wait a long time to be diagnosed so that you can start a treatment for what ever you have I do hope you don't have M.S. You take care

    ssdw1958

  • I feel I have a great doc. He is the director of the UCSF MS Cinic. Wanted to take care of me because of being 68 years old at 1st symptoms, was very athletic right up to the day I went numb.

  • cheshcat

    I didn't think bubble echoes were commonly or routinely done. I ordered once over 25 yrs. for suspected HHT (blood vessel disease). Then again, I'm not a cardiologist so perhaps they are done more often than I am aware.

    Both you and CalfeeChick must feel like lab rats. The rule out/in process for MS is exhaustive. 😁

  • It's certainly an exercise in patience lol! I called my new neurologists office yesterday. I know they said give them two weeks and I called after a week but ya know, just checking in :) I am so nervous/excited for my MRI. I can't believe it FINALLY got ordered.

    The bubble test was ordered by my first neurologist. I think he was looking for reasons for a TIA? When I lost vision. I'm not totally sure. I think there is a valve disorder that can cause migraines and I have Trigeminal nerve problems. My new neurologist said it wasn't a TIA or else I would have had a stroke by now, no one had told me that, I had been on the assumption it could have been a TIA, even though my vision problems lasted around 2 weeks. I'm just happy to be with the specialist now! Thanks to this board :)

    Are you a doctor Erash? Are you still practicing? My daughters pediatrician has had MS since his 20's, he's now in his 40's now. I was annoyed when he wouldn't take my over 18 year old kids when our old pediatrician left (in our practice they can stay until they are out of college). Then I met him and he keeps a smaller schedule due to his MS, then I felt bad for being annoyed, I thought he was just being contrary.

  • cheshcat

    A bubble echo can show a PFO (patent foramen ovale), hole b/w heart chambers that can cause some migraine and stroke.

    PFO often congenital. Saw a lot when I worked NICU.

    TIA is frequently, but not 100% of the time, a warning of a soon to occur stroke.

    I'm not a doc but I played one for a quarter century as a family NP 😉

    Unfortunately, MS cog fog made me choose early retirement last October.

    So most of the knowledge is still in my brain but there's no guarantee I can always access it when needed --😜

  • I'm sorry you had to take early retirement <3

    Your patients must have been sad to loose you, I would have loved to have someone so caring as you as my primary care!

  • Ahhh shucks cheshcat

    Thanks!

  • Hi, Erash. My husband had a bubble echo after he had his stroke in 2005 and indeed it showed a PFO which was then sealed by a pediatric cardiac surgeon, because I guess they usually show up in childhood. I also had one as part of determining whether I was eligible for some study having to do with MS but I didn't have a PFO (thank goodness). As for cogfog, half the time I can't remember what I was doing or saying or why I went into a particular room, I am having trouble watching TV series because I can't remember them week to week and I am totally lost when they go off for a season and then come back and pick up where they left off....and to think I once had a functioning brain! I formally retired from law practice at the end of last year but I really wasn't actively practicing since 2/13. The only reason I kept my license active at all was because I had to help the two lawyers who took over one of my cases that finally went to trial last year. Now that I am done it feels like a boulder has been lifted from my shoulders.

  • Oh Sukie427 i know what you mean about that boulder!

    I stopped work last October and probably should have stopped sooner. My brain had to work 3x harder to accomplish something. Very stressful 😬

    Maybe forgetting the TV series keeps it from getting boring? I can imagine it would certainly keep a "who done it" a surprise 😊

  • Yes Mamam

  • CalfeeChick

    You've been through quite a lot! Not often people do the E-Ticket rides! (another child of the early 70s?)!

    I had to switch neuros cause all the first one did was change my meds because he said what I was taking wasn't helping my "migraines" that and all he said about my double vision and when I couldn't walk down his hallway without bumping off the walls or I couldn't feel my feet was due to Diabetic Neurapothy(sp?) Uh, turns out I never had Diabetes.

    Find another doctor if you suspect/feel something just isn't right. You know your body better! It is yours after all!

    I'm so very proud of you for being diligent! Keep going strong!

    Jennie

  • I hope you have good experience with MRI"s. It does take a while, but my techs were awesome. Kept me informed, they do the first ones, the slide you out and inject the dye which just feels cool as it's injected into the arm. Then they finish up the second half of the mri's. It's loud, but the sound of it actually put me to sleep. Or at least I dozed.

    The doc said he feels the spine lesion is MS, but he's not ready to diagnose yet, keeps it as possible MS.

  • The diagnostic process seems to be as much of a roller coaster as the disease itself. I'm praying for a more definitive test to be developed.

  • I know that not having a definitive diagnosis is disheartening, a lot of us have been there. Keep going to your doctors and doing what you can to alleviate the symptoms because diagnosis or not, there is something amiss with your health. Do not give into the belief that maybe it is all in your head (no pun intended). I did that for a while and made myself nuts.

    My heart is with you. Take care.❤️

  • It makes me angry when I hear about doctors who either can't or won't make a diagnosis. My advice is to keep searching for a doctor who can figure out your issues. I am sorry that you too are having to go through this.

    Nobody wants MS but not knowing is even worse in my opinion! Keep fighting!

  • CalfeeChick ~hugs~ I'm sure you are feeling very frustrated about now 😞. Just remember that you are your own best advocate!☺ And if you want a second opinion then GET ONE! Something's going on and you need answers.☺

    800 532-7667 ext 154 MSAA ☺ call them!

    J🌠

    PS it took about 2 wks for my modnifinl to kicking so give it time☺

  • CalfeeChick have you ever had a blood test for NMO? It's rare and it's an MS mimicked. My doc thought I might have that initially but the blood test was negative (twice) and the lumbar puncture was positive (twice).

  • I was negative twice for NMO in the blood and positive twice for MS in the lumbar puncture.

  • Never had that test that I know of. Now something new to research😀

  • What kind of numbness were you feeling and where?

  • When it first started, it was right side rib cage to feet, tingling. Feet felt like they were in blocks of ice, then heal and ball of feet were blocks of lead, felt like saddle stirrups pulling up on arches. My toes have been feeling detached and on vacation. Within the first -18 hrs, I was tingling and numb on body from ribs down. That was June 28-29, 2016. Now thanks to Gabapentin, it's mostly from knees down, but if I over exert myself, I can barely walk and not sure if my legs will hold me up. I walk quite bent over after exertion. Guessing that it's from the T2-5 lesion messing with my spine. And my osteoarthritis. never had that problem before last year..

  • CalfeeChick, Sorry you are having such trouble getting diagnosed; I was misdiagnosed a couple of times myself so I sympathize but it seems to me that once lesions are observed that should be pretty conclusive. They should not need to see changes in the lesions to diagnose MS. I am not a medical pro but I have been dealing with this for a while and I have never heard that. I have had a number of MRIs over the years with no measurable changes in the lesions yet symptoms have been progressively worse.

    Make sure your neurologist has experience with MS, not all do.

    I take Modafinil once a day (100mg) for fatigue and I find it works well without side effects. A year ago I hardly ever took it, didn't feel I needed it. Now if I miss a dose I feel a definite difference. I guess that's progression.

  • Thanks for your kind words. I'm learning that it may take a while for a definite DX. It's a frustration when we want some answers. I think the doc is just being ultra careful. He does feel the T2-5 lesion is probably MS. He's got many years of specializing in MS. He's the director at the MS Clinic at UCSF-San Francisco. I was referred to them by my first Neuro and my doc wanted to take care of me because of my age when symptoms began. I'm 68. There's not as much research available for us old folks just beginning the MS journey. I've authorized them to also research my blood and spinal fluid and will be joining an age related research project for MS.

    How long has it been since your symptoms began? I'll be 11 months into this on the 28th. In this time I've had 2 regular MRI's, 2 sets of high tech(stronger MRI magnets) of brain, cervical and thoracic spine without and with contrast dye. spinal tap, high tech nerve conduction test from Brain to feet, and 35 vials of blood drawn, I was just hoping for more answers after the second go around. I was a very active athlete before I went numb, riding bicycle 150 miles+ a week, swimming laps and walking miles almost every night. Now I can barely walk around 2 blocks, walk in the pool. guess I'm just feeling a little sorry for myself. Thanks for listening.

  • Hi Calfeechick,

    I'm sorry to hear that you have suspicious results but no definitive diagnosis yet. I was told 'suspected brain infection' 4 years ago when symptoms began but standard MRI was clear. I was later told 'functional neurological symptoms' , in spite of elevated white cells for 5 months, swollen lymph nodes and abnormal EEG waves and signed off with no support. My neck and C spine came back clear last year after 2nd attack following UTI/sepsis so I'm awaiting an August appointment. In the meantime, a bad virus caused a 3rd attack at Christmas and further deficits. I never bothered to inform my GP about this - they won't do anything but document it, anyway. I will tell neuro when I see him. Amazingly, this guy actually condescendingly asked me if I WANTED to have a disease, last time ! Clearly going for the Psychological angle. Not holding out much hope for a diagnosis anytime soon - will consider myself lucky if I am given the chance of any further tests, such is the bias and reluctance when you have been labelled as 'Functional symptoms' ! I sometimes think that finding someone who does not dismiss you on sight and gaining access to appropriate tests to rule things out is harder than dealing with the progressive disability. Hang in there, hugs to you, Angela x

  • I dumped my first neuro because after a low tech exam and low tech mri he actually said, "You have MS, I don't know what you're so upset about, you're 68 and have had a long life." Just wrote me off! You may want to consider a different neuro or one with MS experience.. Just because their credential says Neuro, doesn't mean they are experts.

  • Hi I too was an old lady when diagnosed at 60 years old. I hadn't been to a doctor in 37 years except the eye doctor who I saw once a year needed my sight!!!!! Having had RA since a young child so wasn't too concerned with pain!! Lol!!

    I went blind in my left eye in 1997 but was even thinking of anything about it because I was going through a really rough time with an abusive husband and my sight returned in about a week so never even mentioned it to my eye dr.!

    When my eye swelled my dr sent me for an MRI for my eye orbit plus one on brain! When he got results is when he told me to get a PCP and see a neurologist !

  • I just started LDN low dose naltrexone at 4.5 just before I go to sleep. It is supposed to reverse autoimmune disease. I have MS and Hashimotos Thyroiditis. You might look into taking LDN if you have any autoimmune disease. I heard about it years ago but I didnt look seriously at it until I gained 40 lbs over 6 months because either menopause, thyroid, adrenal insuffiency or ? And I read about it being part of a newer combo appetite suppressant that helps with depression. I have had 5 nights on it and though sleepy the first two days, I now have plenty of energy and Im sleeping well at night. I also feel great.

    I'll let everyone know if it helps my Thyroid and MS and weight as I see changes.

    I wish you well in your health.

  • You are fortunate to have a physician who is at least willing to begin DMTs for you. 🙂 I was in my 30s and was not afforded the option, even with elevated Basic Myelin Peotein in my CSF, clinical symptoms and lesions in my brain and thoracic spine. Now in my 50s, I'm in a new state, new doc, had another LP showing O bands and mris showing more lesions; I finally a formal diagnosis, started DMTs and (in my opinion) its too late, and my body is not tolerating them because I believe I have progressed into SPMS. 😔 Prayers for your MS journey. 🤗🙇‍♀️

  • Calfeechick, I just don't understand. 20+ "white spots" and he can't diagnose you??? I have far less and was diagnosed virtually immediately. I wasn't ready to accept it, so I went to Duke University MS Center to their MS specialists for a second opinion and they confirmed the dx. I refused a spinal tap, but did have nerve conduction studies which were normal and my neuro said that that result indicated that the nerve pain and screwed up signals were indicative of MS! They started me on Gilenya right away and I thought it was doing great until it ripped up my stomach. I do have more lesions on the spinal cord than I do in the brain, including one right on the brainstem which is why my mobility is so bad. Since I've been on Tecfidera I've had relapses but no new lesions so it's the current lesions that cause them. I get being cautious, but maybe there is such a thing as being too cautious???

  • Dr. Is just hesitant to mis-diagnose.

  • CalfeeChick all my symptoms come from my cervical and thoracic spine. My lesions in my Brian have not changed in two years since my DX. That is good and bad. They are supposed to go away! Clear spinal fluid is not a definite non dx, it just rules out dozens of other things. Keep you chin up. Unfortunately my non Dr point of few points to MS. We will all keep praying and that the insurance covers your meds and that they help! Take care and always feel free to message if you want more details of my symptoms and issues with the Dr. Also, You are a rockstar with a family like that and Grandkids! So blessed!

  • My diagnosis was years ago but was told my symptoms indicate MS I later read some neurologists don't like to give an early diagnosis as worry can make symptoms worse hopefully that's not the case now as before tests I was thinking I was going mad with so many odd things going on at once at least the neurologists was able to assure me I wasn't hope you get a diagnosis soon and it's something that can be sorted out easily mags 52

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