Has anyone had the test for active JC virus (taking Tecfidera)??? I was told it required a brain biopsy or spinal tap. Is this true?? I have symptoms but no one knows what causes what symptoms!! Help please!
JC virus test: Has anyone had the test for... - My MSAA Community
JC virus test
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agapepilgrim
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I was tested for JCV by a blood test prior to first neuro wanting to prescribe Tecfidera. I tested positive. He still said I could take it for 18-24 months. For other reasons, I left that neuro and started with MS specialist at UCSF MS Clinic. My neuro there said we'd find some other med for me. Sorry you are having symptoms that make you worry about the PML, it could be just ms symptoms. I am not sure how they would test for the PML. I would suggest doing some PML research on MSAA or google before you have to undergo spinal tap or any brain biopsy.. Please keep us updated. Lynn
@agapepilgrim
Hi, I agree with the others. A simple blood test will tell you if, I believe, you have antibodies to the John Cunningham (JC) virus. That is not the same as telling you that you have an active JC virus infection. I would imagine that they could start by looking for antibodies before doing more invasive tests. It may be that they already looked for these by doing a blood test before you were put on Tecfidera? I don’t know. There are varying degrees of “positivity” that they look at. That is, if you are “positive” (antibodies are found in the blood), you can be weakly or strongly positive. Presumably, this refers to a high or low concentration of antibodies (?, not certain of that), but the more strongly positive one is, the greater one’s risk is of developing PML.
You are right that many PML symptoms are akin to MS symptoms. I am not a clinician so I can’t help you to differentiate. I would hope that your neurologist would explain to you what you should watch out for? (Wishful thinking??)
Perhaps others here can shed more light on this?
Offering prayers that you get the answers you need. 😊🙏🏻
starlight5 Nom_De_Plume CalfeeChick thank you for your answers, I was not given any blood tests before taking Tecfidera. After reading the clinical trials that came with first order, I called and asked nuero for a JC test. He refused to answer my calls or leave a response. I went to primary with serious vomiting, asked for a JC test, he said he had no idea how to give that test. Did go to another MS neurologist that was specialist for botox injections for my serious back spasm and neck pain. Asked her about the JC test; she responded it can only be given by Quest Labs and my insurance had to receive pre approve from diagnosing neuro. So, left message and asked again, because I was receiving weekly info from Biogen warning of PML due to JC virus. Still, no response from his office. That neuro said she would contact "my MS" neuro. Never heard from him. Did return next week for nerve test (which was awful - I imagine that is what a taser feels like; actually lifted my body off table at one point) and her sticking needles in my shoulders and neck and watching nerve resonse on computer screen. Said I wasn't candidate for Botox, but would make appt for some specialist that gives pain med directly into the muscle spasm area and/or neck area. I cringed at that thought, but said okay. That was 2 weeks ago and have NOT heard from her again. I am sooooooo tired of being "my own proactive advocate" I have not called her back. Then the pscychologist that neuro insisted I go to due to PTSD flare ups due to increased right brain damage, insisted I had to see THEIR primary first (so now I have a new primary not in my town, but 40 miles away. I asked her about JC test; she said that it is only proven with spinal tap or brain diagnosis and not required for Tecfidera. The reason I am worried is because 6 months ago, GYN discovered I have HP virus and have suspicious cervical cells, require a 3 month check up til whenever. I have the Shingles virus (horrible shingles 40 yrs ago), and also Epstein Barr virus from my sister having mono when we shared a bed in high school. So, I was running scared after being sent weekly warning mterial from Biogen. Due to insurance changes, neurologist moved away, first one retired, 3rd one at UK MS clinic sent me packing because my insurance wouldn't pay for labs at UK hospital. An Aubagio event (which later caused pneumonia and had to quit) led me to my current MS Clinic neuro, who is "the best in KY." He put me on Capoxone, rather than lower dosage of Aubagio due to my chronic bronchitis and asthma since early 20s; 4 months later developed horrible shingle type rash on all 4 limbs. Neuro said not Capaxone because not at injection sites. Primary said a viral rash - steroids didn't phase it. Sent to dermatologist - took actual biopsy from my arm - wtih stiches follow up - lots of pain afterwards - said it was a bug bite! I'm not stupid! Went to my allergist next to put 40 patches on back and said it was topical rash caused by Capazone. Took report to neuro; woudln't believe it! Called Teva, sent clinical trials info and said show this to your neuro (2% in clinical trials had all-over rash). That made him a bit angry, said I read to much, and said only DMT remaining for me was Tecfidera due to my extremely suppressed immune system; didn't know if it would help at my age, but only med remaining, and immediately (with no blood work performed) started me on it. Today! the pharmacy that delivers Tecfidera to me called to see if I was having bad symptoms. Told her of nausea, weight loss, stomach spasms, and asked about JC virus test. She told me to find another neurologist. I started crying as I told her this was my 4th neurologist and I did not have the cognitvie ability or emotional stability to find another neuro in this area of KY. She said, well, no worry about it, patients still take Tecfidera even wtih positive JC virus until PML symptoms start. I have all those symptoms already from 53 years with MS and progressive MS brain damage in the last 3 years, so how would I know! She said she was sorry,and I needed to find another neuro. I cannot! Anyone wonder why I have stopped smiling and having sense of humor? I keep reading my scriptures and listening to my faith building, praise and worship music......but....I am at a loss for the next step. I think at my age and the above events, I should just let my body take its course. In retrospect, I have been battling this pain, fatigue, lack of sleep, emotional disorders for 53 years,with only God's help. My cousin died of MS in the late 80's, a slow death in a nursing home in her 40's. I thank God He has given me the strength and wisdom to survive, but, guys, I am tired of being an "MS warrior and a positive self advocate." Too many doctors have made be disillusioned with the entire medical field, and the cost of Medicare Advantage insurance has risen beyond my budget, since my current one is moving out of KY 12/31/17. I am praying if that's what God wants me to do, 71 in 2 months, give me the peace to accept I lost the health battle. Without a personal physical support team that I did have, I have written a lot on this forum because you guys are the only ones who understand (none of the medical field does at this time, nor does my husband or daughter) and I would lose touch with reality if I did not express myself and get it out of my mind. I have learned that from my two bouts with psychological assistance, once in 1992 with nervous breakdown from personal relationship trauma, and again in 2005 with PTSD flare up after head on car collission that an angel saved our lives. A true miracle; our car looked like an accordian. I spent a week in mental health clinic at that PTSD attack. And now more pyschologits? I am tired. I asked my husband what he thought of me "giving up" on "fighting MS" and all he said was that it was my choice. I was hoping he would say he loved me, needed me, and didn't want to lose me, so please keep fighting for life But,he didn't. From the lines of the movie "Frozen": So, here I stand and here I'll stay. (Death) never bothered me anyway. so, LET IT GO!" Appreciate you praying for God's guidance for me. In the instant of the car accident, when a car was approaching us head on, in our lane, both cars going around 60, all I could think was, God, I did the best I could with my life of traumas. And I felt the greatest peace. But He wasn't ready for me to go Home. So, now, I have peace, just seeking God's will. It was painful for my husband to not encourage me to keep fightin. I know that is the theme of this forum, but 53 years, and current medical field giving me different answers for my future, with no encouragement that anything will help. I did find a wonderful massage therapist who uses essential oils, but we cannot afford $60 a visit to relieve the pain for a few days. I have tried every suggestion listed on this Forum, but I guess my MS is too far advanced in my brain for the remedies that seem to help others. I remember the sweet face of my cousin Susan who was at peace; her MS was all in her spine. If only my 2 greatest loved ones would encourage me as much as all of you do, I might have motivation. It is after midnight. I will close down.
"In whatsoever state I find myself, I will be content."
Good grief! Your story is enough to make anyone crazy! I am so sorry. I can’t believe how incompetent those doctors are. Please know we are thinking of you and don’t give up! You’re the best advocate for yourself.
agapepilgrim, we are sisters.....I am so sorry....I too have a cousin who passed from MS.I too grew up in the IN and my grnaddparents in KY(love it there)...I too been given the girl talk(don't think they do this to men too often) of researching too much and the best of oh honey go home put your feet up....etc.I also received no call back on the positive JC virus.(I get every result in the mail, sometimes before doc does)Often a retest needs done to make sure the 1st test not screwed up)...MS until resent travel often highter in eastern states compared to near equator due to low vit d sunshine..I truly admire your faith in the Lord.Hang on! JC is very widespread and some never get symptoms.I wonder all kinds of things about it and get little answers.I don't think a lot of docs have heard it.Find another doc and maybe listen to others on what they think of their doc.Oh my heart goes out..wanted to cry...We just want to live life the best we can.Noone should ever be treated this way.love to you.....!
jackiesj thanks. I read that about statistics of where you live. I was “raised” in Florida andcso was my cousin who died of MS. Plenty of sunshine (but always heat rashes and sunburn Had MS back then but docs misdiagnosed for 53 years. Yes I read50% of society has the virus, but Biogen found out in clinical trials that Tecfidera may make it active and cause PML. I was among 2% who got pneumonia after 5 months on Aubagio, then given Capoxone and after 4 months had allergic reaction that less than 2% people in clinical trials got the overall shingle type rash. Neuro said Tecfidera only thing left for me to take in my current health and comorbidities! I will continue live life the best I can for God. Only reason to continue walking they this vale. God bless you through Jesus our LOrd.
Its a blood test. I had it and tested positive, my Dr told most people do its very common, there's just no symptoms
It's a FREE blood test. Picked up by the federal government regardless of any insurance.You just need out find out which lab in your area does. Mine was Lab core I think. Could have been quest. Forgetful sometimes....Good luck!
Just read ur ? about JC Virus. I was DX in 1994 and up until this past July 2017 no Neurologist ever ordered or suggested a test. Guess I had better cognitive day and said I wanted one done. No charge. ( thru at least 8 Neurologist) it was never mentioned. Going to MS events and learning about PML I once again was called to be me own advocate. My test was positive. Saying only I had been exposed to it sometime earlier. Duh ! That’s it I have been on Tecfidera for 4 years & I guess I’m ok. Who knows ...Right ...My neuro said 1 in 50,000 would get PML. So I’m still on medication and have no way of learning what symptoms are....since they resemble a flare...I know this doesn’t help much so I just keep on praying.
I was positive..blood test..taking Gelenya...still have a lot of symptoms
Angel006 , welcome! Thank you for jumping in and sharing your experience. We look forward to getting to know you better. 💕
Thanks
Judy I'm sorry I didn't get back to you it's been kind of busy. No that is not true that they have to do a brain biopsy unless you're I guess very sick and they're checking to see if it's actually hit or affected your brain. I simply have had blood test taken for it but you have to go through a specific lab that does the correct test. Not every lab will test for JC virus. I'm not certain if that helps but I have had it done. I know Quest Laboratories there around the corner from doctor twyman's office does do the test for the JC virus. It is where I have had it done several times while I was on tecfidera. I hope this helps. And I also help your doing better. Perhaps we could meet for lunch one day next week and talk more. I know the only day I'm tied up is Wednesday or Thursday I think for a doctor's appointment. I'll check on that to make certain and you tell me when you're available.
Fancy1959 hi! So good to hear from you. The Botox dr Twyman sent me to said Quest labs at Frankfort hospital will do the test, and she would call Twyman to remind him to order it. No response (month ago).. since I recently was tested positive for HP virus (imagine that) and sent by a Primary doc to GYN in Lexington an must be tested for cancerous cervical cells every 3 months. So I am nervous because also have shingles virus (horrible case 30 yrs ago) as Epstein Barr virus told that caused my fibromyalgia and Twyman saying I have very suppressed immune system system. Biogen calls once a month, dispensing pharmacy calls once a month - both say insist for JC test. No one insists Twyman do anything! And the symptoms for PML are same as current MS symptoms so Biogen nurse said IF they get worse, go to hospital! Soooo disappointing. But you say warriors dont quit; just fatigued. I thought you said JC virus is what made your MS worse, and you quit taking it.
Hey Judy it's Fancy1959. When I was on Tysabri, I had my JC virus count monitor regularly like 2 to 3 times a year. The count has started to rise and was over 3.5 I believe and my risk of PML had dropped significantly. A long about February of this year I started to notice after I had a Tysabri infusion I started to have some reactions that made me feel bad. It seemed like each infusion from February to April it got worse. In February I tried to pass out when I left the infusion center and I had to turn around and go back. In March I stayed at the infusion center on purpose but I felt weak and disoriented once I finish the infusion. By April I was weak after the infusion I had a hard time focusing I didn't feel as if I could do anymore if it kept getting worse. As a result I stopped taking Tysabri. I suggest you come to the next support group meeting. I believe it's on the 18th and I will find out the number to call to sign up for it and get back to you shortly. At the meeting I would get the nurse Navigator aside for MS and speak to her and see if she can't get you set up for a visit to get the JC virus test done or sketchy directly to Quest Laboratories to have it done. I'll be back to you shortly. Love you and don't you dare give up. Fancy
Fancy1959 thanks. We came to Illinois for willis reunion. Travel and hard bed equals spasms in thigh. Can hardly walk! Nurse for Tecfidera said Twyman must order! She said there was medicine for the stomach pain and nausea. Call and request. I did. Amanda called back: take baby aspirin and high fat meal before taking it. I am already doing that. Requested jc test again. No response. He makes me soooo frustrated! Maybe need week we could meet if we feel up to it. Dr appt on Tuesday with GI. Glad you are successful with Ocrevus.
I am so sorry for this scenario. It is aggrecious. I took the test on medicare & no hassle. Looks simple to me, dr needs to write order. I elected not to do the medication that had the exposure even though i was negative. I thought the benefits not worth the risk and fortunate could stay on current meds. After reading about PML, don't listen to the nurse. It is as dangerous or more so than MS. Not looking at it now, but are there markers on the MRI? Does the local MS society have someone to help you?
We cannot fault the drs for not knowing everything, but when you bring in medical journal articles and they refuse to even look at them or explore it and get back with you, makes you lose faith in them. When they completely ignore you or refuse to return calls, it is disrespectful and bad business. I would have more respect if they just listened and answered your question.
Last dr, not neuro but applicable, 4 1/2 month wait. 10 _15 mins going over history and complaint with intern 5 mins with Dr who prescribe me pain medicine I didn't want. I wanted to confirm source of pain.so listening and communications could probably lower our blood pressure and the cost of medical treatment in the usa. Chronic care lacks in most instances.
Your case sounds complicated not to mention fustrating and difficult . Is there an ombudsman or advocate that could assist you.
Most of all don't lose hope.that is so vital to our well being and our very essence and our relationship with God. I believe nothing is lost on this earth done with virtue. So hang in there and fight. I am sure your husband would be devastated, he is probably overwhelmed also.
May your next post have better health news and answers. Will keep you in prayer and all those with this condition
Brindisi1 cant get ANY of my dra to write the order. Ridiculous!
Send a fax if you can. Wait 30 minutes. Call them and ask if they received it. If they say yes just thank them. If they say no tell them that's funny because it says transmission received. Double check the fax number with her. Ask her to check again making sure you ask her name and write it down. I will bet you will hear something within 24 hours
I'm home right now so I will try to check in again tomorrow.
SometimesCrazy nice idea, but all my doctors (everyone it seems) have voicemail and I can only leave messages. Never can talk to a person they cover themselves by saying go to ER if emergency! So, still gotta wait and see if on the 31st he doesn’t order, no more roads to take. He said he is retiring in 3 yrs,,and his demeanor and concern reflect that. Jesus is the healer of my soul and that’s the priority. God bless you with the presence of Jesus Christ.
agapepilgrim I am so sorry, but please do not give in to hopelessness. We love and care about you. Where is your support community from a church? Keep posting as it is good for the soul.
Joc-42 sadly, my church sends me s we miss you get well card once a month. It’s too late in life to connect with another church family.. Out of sight, out of mind. Called 3 doctors yesterday - Neuro for script recommend by Tecfidera for stomach pain and nausea - no call back. One to another neuro that took a nerve test eval and said she would call back with results and next step—no call back. Third to PT to set up appt - no call back. Only call backs from Medicare advantage plans. My current one pulling out of KY. Only 2 available in my county!!! And both have poor drug coverage. I was taking 16 meds; got disgusted and stopped 10 of them 9/1, but the 5 I remain on will cost $243 month, not even considering DMT. I am too low budget to afford that. Am now paying $3.30 for all generics. So, yea, 1/1/18, I may just let go and let my “comorbidities” as doctors call them take their course. I had s young friend you had breast cancer. When it returned, she refused treatment, said it was too painful and destructive. She let her body run it’s course and died at 35, leaving behind 2 children and Husband. I didn’t comprehend her decision. Now I do.
I have a new appreciation for the immensity of your struggles. I wish you could find a fellow sister in the Lord to help share your issues that are so discouraging.
Joc-42 yes I remember when I did. We attended a church in St Louis for 30 years in which we were the most active members (served I every dept, 500 members of that family, had 2 very special sisters in Christ, and many wonderful dinners shared in homes of friends. But.....traumatic ending of our “pastor” being convicted of pedophilia divided the church in 5 directions. Because I was the main office worker, overseeing all others, friends thought I knew! I never been so disillusioned in my life. Same time my husband was retired from 30 years in coal mines in Illinois. We sold Home, stored belongings, bought RV and traveled the USA for 7 years. Carried health records with me so I could continue treatment for health issues. Then Husband had stroke and we retired to KY 10 yrs ago and started attending a small country church. It was great at first and I was asked to do church bulletins, etc. Husband an usher. Then BAM! 53 years of MS finally diagnosed as my personality had greatly changed in past 3 years, little control over emotions, balance cognition, sleep, and pain in neck and back. MS had caught up with me and conquered me. Major flare ups. My “dear friends” for 30 years have disappeared and no new ones have entered my life. To me it is incredulous my senior years have ended, notbin a beautiful sunset, but a dry desert ofvsurvival. But.....”through it all, through it all, I have learned to trust in God; I have learned to lean upon His Word.”
agapepilgrim , did you stop those 10 drugs all at once? Did any need a taper? And without your doctor's knowledge? I'm wondering if stopping any of those as you did may have contributed to your current discouragement? I ask because I know this can happen. Did it once myself out of frustration with my neuro when I was undiagnosed 2yrs after my initial diagnosis. I was angry and felt I didn't need the meds if I didn't have MS. Made the decision on my own. It was hard.
Praying for you...hoping you find encouragement and purpose. 💞
WAshingtongirl yes, my own decision; haven't told primary or neurologiist. Neither ever return my messages anyway. My symptoms haven't changed since I stopped them cold turkey. Researched each one to see which ones caused cognitive failure maybe. After neuro told me i had greater right brain damage, and because I was getting confused when loading my weekly dispenser, after research, I decided those meds were contributing to lowering cognitive failure and more brain damage. Yes, I am more depressed more than in the last 3 years, but it has steadily grown worse because of battle with doctors and insurance companies, realizing my husband and daughter will never understand the damage done to emotional seat in brain, loss of Mandi and not being "allowed" to get another rescue therapy for me small dog. My daughter is going through her own storms (Crohn's is getting worse; migraines getting worse, high stress as respiratory therapist; functional autistic 22 yr old son becoming more depressed), so she is no longer inviting us to come visit every 2 months. The lack of concern from my doctors I think is biggest source of depression. And insurance changes - only 2 medicare advantage in my county, and both have rocket high drug co-pays. My Nuvigil will go from $9.50 to $ 165 monthly, so that will be gone at end of year. Resoril, Valium, Baclofen, Xiidra ($140 month now $7) and 7.5 Norco are the ones I limited myself to, but with cost over $200 plus the premium, (found info last 3 days), my choice of stopping all medical help is a serious one. I worked for over 30 years paying the govt for Social Security and health coverage when retired. Yet, now they deduct $127 for coverage I already paid them for, and pay very little of medical costs. Hence, the need for medicare advantage assistance plan, which the 2 available in my small town are over $200 with cost of those 5 medicine. Tecfidera is "free" due to low income. So, those are growing sources of deeper hopelessness of getting better, and not worse. I could not have afforded the meds I stopped on 8/1 at the new costs beginning 1/1/18 anyway, so it is actually a good leading from God to begin to eliminate them. Now the Nuvigil and Xiidra (I also have extreme dry eye disease for last 20 years, growing worse) will be beyond my budget. I thank God going off Topamax did not bring back my terrible migraines. A miracle. And I don't know what my thyroid levels are doing going off Levoxyl. And Prilosec and Zyrtec and low dose prednison for severe allergies to dust and mites. But, like as I said MS symptoms growing worse, and from my reearch, at my age, this cannot be stopped. I have had some wonderful happy times in my life - backpacking, hiking, canoeing, sewing, traveling 48 states, vacationing on the beach, traveled to Dominic Republic with church group to rebuild a church destroyed by tornado, privileged to go to Holy Lands with a church, blessed to enjoy 3 cruises, and travel for 6 years full-time in RV. Most people never have had those joys. So, I must read again, "As a Man Thinketh", and keep my thoughts blessing and praising God, and thanking Him for a warm bed, a very physically assisting husband, and the ability to keep my brain partially (not much damage on left side brain.lol). Learning to lean on God. Learning to be content. Learning to lean on "His mercy and compassion are new every morning." Learning that what I am thinking and feeling in this moment only is what I need.n"Sufficient unto the day is the evil thereof, so take no thought of tomorrow." Scriptures have such a deeper meaning now. I have a photo printed out of you and jimeka together on my wall, and I look at it for inspiration!
Ah.... agapepilgrim , you are breaking my heart. 💔Living in a rural area has so many positives, but I know first-hand what it lacks, too. I drive 30 min to see my Lupus doc, 45 min to see my urologist, eye and liver docs, and over 2 hours to see my primary care and neuro. But it's worth it to me. I am praying you find another primary care doc. One you can talk to, that will listen, and advise you with wisdom and compassion. And what about Fancy1959 's neuro? Is it feasible for you to see hers?
You should NOT stop your thyroid med!! Thyroid affects cognitive issues. Take your med! I am going to find that prescription assistance list again and post that in another post. Call the numbers listed there and see if you can get assistance for your meds.
And I will be praying...For your depression, for those you love and who love you, for the discernment to return to your current docs or to find new ones, and for your meds and help with those expenses.
Don't give up. It's not time to bask in past adventures and joys. You can make new memories today and still find joy in tomorrow! I know you can! 💕
Ok, so the prescription assistance list is only for MS drugs. 🙄From what I understand in your post, it's other meds that are too expensive. Right? You may have to contact those drug companies to see what they offer in way of assistance. Sorry I couldn't help! Anyone else? Maybe I've missed something. (Like you, agapepilgrim , my right brain hemisphere is affected. 😉)💕
WAshingtongirl Actually, Fancy1959 started going to my nuero after we met so she could get started on the Ocrevus. He is recognized as the best in this area. He was recommended to me by someone (at a meeting) who has been seeing him for 22 years, Our first 2 visits were great. Not sure what happened, but he changed his attitude toward me on the 3rd visit. I am a very inquisitive person, and I ask questions. He doesn't like that; said I read too much. As my daughter in the medical field said, doctors like to have agreeable patients who do what they say without questions (even if they don't listen to the patient's symptoms). I don't know about the thyroid. Maybe soon I will have another CBC and see if TSH levels dropped. I just couldn't handle all those medications anymore. My fatigue levels have not increased since stopping. I went to a new "primary care doctor" (who was actually a NP) that was required to see the pyschologist that my neuro was demanding. I told her the lsit of meds I had quit, and she had no response whatsoever. Also, she is the one that said the only test for JC is spinal fluid. S0, I have already lost confidence in her! But, I do see her again on the 25th, along with the psychologist, who I think is a waste of time. My emotional state is caused by my progressive right brain damage, but they don't want to accept that, neither does my family. I believe xanax would help control my emotional state and keep me stable, but none of them will believe that. I have used 1 mg twice a day, and it totally changed my emotional distress. But, no one wants to prescribe. Just like I called my neuro, and said my stomach pains and nausea from the tecfidera was worse, and Biogen said there was a particular medicine just for that. He refused to prescribe; just told me to eat high fat foods with baby aspirin 30 min before taking it. I wasn't ignorant; I had already read in Biogen info that is what should be done so I am already doing that. Jennifer said doctors DO NOT like to be told what to prescribe. so, my symptoms continue. I haven't eaten all day (8 pm), just not hungry and don't care. New symptom of muscle spasms in my right thigh is very disturbing; must use cane, painful all the time. But, no use calling neuro; it's just MS progression. Thank you for your concern. I am still holding on to God, and HIs love, and reading my devotional book every day, and listening to worship songs, but I see no reason to "fight MS" anymore. I have changed my diet, increased supplements, and took their DMTs, and after a year and a half, I have only progressed in my pain, fatigue, emotional and cognitive failures. As my neuro said, you have fought this for 53 years, and you are tired, but we will find new ways for you to cope. Well, his ways have not helped; only progression worse. So, when my current insurance is gone, I will not be taking their expensive meds, and just let God take over my health. I pushed myself to travel 4 hours to my husband's annual reunion, had to sit in a lounge chair rather than at the picnic tables, so most ignored me. It was discouraging, to say the least. But, I tried for Frank's sake, and he thanked me. My daughter is so busy with her own life, and her sons. I am learning I was living for them. But, now, I must live for God, and expect no support from the people around me. This is the only place I talk anymore. And I was such an outgoing, active, passionate, loving person. Now I am alone in my heart. I will keep going until the end of the year, and after that I quit fighting for my health. Thank you for listening.
agapepilgrim , I'm sorry I'm late responding. I've been absent the past few days. My heart breaks reading this. You're a fighter. I know you are. But you sound broken. Defeated. I don't understand why your doctors won't prescribe the xanax if it's proven to work for you. As for your neuro, I pray he comes around and 'returns' to the neuro you first met and visited. I am sending you a virtual hug 💓 and am continuing to pray for you. 💞
@Tutu Yes, I only get assistance for the Tecfidera. The Nuvigil for extreme fatigue of MS will be $158, Nuvigil $45 monthl i instead of $3. Can't imagaine the total would be for the ones just stopped taking: Topamax, Synthroid, prilosec, Benadry, prednisone (last three for allergies), Celexa Robaxim, hydroxine Pamoate , anadrosterm (sp?), Dental serice not included (and I have gum idisease requiring cleaning every 3 monts. But God can work miracles, so I place miy fuure in God hands. Love the song "I know who holds the future, and I know He holds my hand." Blurriness has taken over. Until next timekee
Continuing to pray for assistance. I believe in miracles too, agapepilgrim . 💞
Blood test I was told!
Best wishes
But brain biopsy or spinal tap is for the definitive diagnosis.
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