Hello im not from the UK. But ive searched high and low for answers. Anyone please help and thank u in advance! I had thyroid removed dec 2018 d/t PTC no RAI needed. U knoe the drill they slowly started increasing dose with goal TSH 0.5 . I started off 75mcg levothyroxine and then 88...i first noticed ringing in ears and fullness in ear with popping noises...these things wasnt there before except i was pregnant and delivered nov18....i found lump on neck during pregnancy...it was ectopic thyroid tissue and fna said thyroid cancer...my ears rang. Anyways back to time line...by feb/ march i seen endo who then put me on synthroid. She put me on 100mcg synthroid and next symptom still tired but got a newborn ...stiffness in neck..lot stiffness. Ringing in ears worse. I had random pin pricks before i got pregnant but rare and ramdom in feet. Well i started feeling random electric shock pins pricks more often in arms and feet..i ignored it cause i read ppl post amd assumed it was thyroid adjusting...next see took me to synthroid 112 and more stiffness noted in neck upper left back and left hip some...random tailbone pain but rare...i was kinda dreading if she wnt up...next synthroid 125 i get tingling in hands and feet her nurse said it could be levels leveling out ...now pin prickly more often in arms and legs...out bad cold dudnt finish antibiotics..cause breastfeeding and baby got sick...she didnt go up on dose. I got sick again ans 3days into abx developed burning mouth that ending up settling to left in jaw numbness and left inner roof mouth burning....still present today and started in may or june...a week after this went up into my face and eyes.i went to ED and calcium in upper range normal and Vit d good...and also had extreme fatigue ...so current day they are all through my body and are constant...i will tell more later...tingling in mouth too. I got neurologist referral...mri showed 1 punctuate nonspecific white matter lesion(periventricular)...and a haze not really a lesion just mostly bright area....neuro said could be MS. I got lumbar puncture...all normal..got nerve conduction test and EMG all normal. Then i noticed left side of adbomen muscle sore or felt tight and left area in butt and got shooting pain down it. I have pulling sensation under left rib too . Lot left side manifestations
All these things happen slowly from feb til july. Then i noticed small twitching under belly button at random. And then one night under left side of sternum twitching. In August i developed dizziness almost occuring everyday like somebody pushing head forward and 1 week later constant floaters with occassional blurry vision. Over 2 weeks ago now the twitches are everywhere.
I have pain that feels like bone and /or muscle pain that shoots through my hands and fingers forerams mostly but also in a toe or hip or back. Over a month ago my endocrinologist check several labs for me she said never heard of thyroid causing pins and needles but lowered synthroid 100mcg and t3 5mcg 2x a day cause due to fatigue.
Labs Aug 2 2019
First TSH is only this high cause i was playing around with time taking medicine to see if it would make change in symptoms before TSH 0.6 2 months prior
TSH 1.670
Free T3 2.16
Free T4 1.16
B12 693....vit d 41.3...iron 85....ferritin 68.5...thyroglobin ab less than 1.0. Sodium 143 and potassium 4.3..magnesium 2.3
I get levels rechecked after starting t3 next week but i can tell u it only help slight difference with energy.
I saw a 2nd neurologist who is a MS specialist 3 days ago and he said based off my mri it doesnt look mri with ms and said he will do mri of neck and thoracic since i do have pop neck a lot and pulled muscle in back and not had mri of this area and if i have ms lesions could be in that mri too...he said if that was normal to lay this MS bull $%^& ( im christian I don't curse) to rest. I did confide in him that leading up to this time I had lot stress...thyroid cancer discovered while pregnant and had csection had get blood tranfusion...28 days later had thyroid removed. he said they see ppl all time with similar symptoms never develop neurologic disease they jusy treat symptoms...he told me go back working out and take the neurotin and 6 months cause ppl get into bad cycle with this ...i get that...but neurologic symptom wise had gotten all worser and how am I developing upper neck stiffness ....upper back ...left abdomen...left hip...left butt...from nothing??? So I got result s no abnormal signal in c spine or tspine...i do have degenerative disc disease in cspine...but DoC says no ms...i have copy of both mri results and have on disc....also Lyme test negative
So current day
1Legs and arms easily go numb or sleep when bent
2. Extreme fatigue
3. Constant wide spreadpins and needles. Mostly on left side of body but everywhere..also feels like ant bite or flicking water on me...also electric shock sensation everywhere
4. All over twitching
5. Hip pain neck pain joint pain ...mostly left side but is on both
6. Floaters...never had none until now
7 dizziness...like somebody pushing head forward...
8. Brain fog ..cant concentrate at times. forget what im doing
9. Ear ringing and popping..
10 sometimes eye pain
Any advice welcome. God bless u all
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BethanyOxe
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I was diagnosed in 7/ 2010 with RRMS. I came out of remission 12/2016 my walking was affected and I slowed down. At that point I was using a cane and the Bioness brace for my calf and thigh. Yes I ignored the symptoms when I was coming out of remission big mistake.
In January of this year I had an exacerbation my legs gave out completely and I was unable to walk I ended up in the hospital from 1/26- 2/11/19/19 and then outpatient for 4 months. Now I use a walker and the Bioness . I use the cane in the house because my comfort level isn't there yet to use the cane outside of the house.
I was taking Tecfidersa from 2016 to May 2019. I had my 1st 1/2 of Ocrevus in June and my 2nd 1/2 in July and I have seen improvements since being on O.
I switched to O because the dr at the hospital stated I would benefit to switch to O
I wish I had some answers for you. But one thing I suggest is that you continue to be your own advocate and keep asking questions. Many diseases like MS can be difficult to diagnose. You certainly need to know what’s going on and what you can do about it.
You’re in my prayers for some clear answers soon. I’m sorry for the stress this must be causing you and your family.
Thank u...i like your picture..u look happy! Well the 3rd neurologist is in Duke very prestigious hospital. by time I see him it will be 6months from first mri brain scan. yes I need prayers ...im scared for disability...the unknown just makes it harder. I had cancer and now this?? I've been praying god reveal what it is...running from doctor to doctor...i need a miracle to happen
❤ I'm feeling for you. It can take years of seeking diagnosis. I finally stuck with one for 3 years till I got an MRI. I had enough lesions that I finally got dx ed.
All of that to deal with and having young is very stressful...keep your nerves calmed as much as possible. I would suggest going to a MS meeting some week,if you get time. It could be helpful faith finding answers.
Like other people who have gone through the struggle of getting a diagnosis for strange and worrying symptoms, I understand your frustrations and worries with not being able to pin down what is causing your symptoms. However, a month ago you uploaded almost exactly the same post as above in the Thyroid community on this site, and received extensive feedback from members of that group on possible issues with your thyroid situation and medications.
Now, a month later after putting up that first post, you have had the results back from the tests that the second neurologist (the MS specialist) ran - and he has advised you that all the tests that have been done indicate that you do not have MS. You have also had all of the other tests (lumbar puncture and nerve conduction studies etc) which are used to see if someone has MS - and the outcome from two neurologists, including an MS specialist, is that MS is extremely unlikely, and they have also ruled out other MS mimics such as B12 deficiency and Lyme.
Based on what you have posted in this MS forum and the thyroid one it maybe better to follow up further with a different endocrinologist and raise more questions regarding your thyroid issues instead of seeing more neurologists - and the people in the thyroid forum have given you plenty of avenues to explore on what might be causing problems. Even though one lesion was found on your brain MRI you need to remember that many many people have a lesion (or two or three or more) in their brain and do not have MS - there is more to MS than seeing white spots on MRI scans. Your symptoms seem more like fibromyalgia than MS, although I'm sure the doctors you have already seen have probably already considered this.
Thank u Frances B. I'm sorry for post hogging and im sorry for being this way...im just desperate wanting answers. I did put same message to avoid te typing it all cause im doing this all on cell...ive heard patient stories about mis diagnosis. My thyroid cancer I was told didnt need to be biopsied cause it was ectopic thyroid tissue and ectopic thyroid tissue only happens in 10% of the population and chances of it being cancerous was 1% and less I insisted on getting biopsy and guess what I fell in that 1% it was cancer (even the literature states this) and the doctor was shocked and said she had never seen this and all the other ent only seen it 1 time in 20-30 years of experience. And then after that thyroidectomy had vocal cord paralysis. But i said all that to say i know what it's like to fall in that category in the small " unlikely" percentage...if i told u my whole life stories this doesnt fall short from a reoccurring them. i thank God for my results thus far. i thank god for ppl like u and others taking time respond and help others like u ave been helped. i hope my test will be a testimony. But i still have uncertainties ....these unfornate events have resonated with me and as result here am😂😂🤗😊
You don't need to apologise for "Post hogging" (whatever that is). So many of us here have been through all of the uncertainties of not knowing what is wrong or why and know the feeling of being desperate for answers. I have on a couple of occasions in the past been accused of being unfeeling and unsympathetic when people have posted similar stories of stress and worry on this forum - particularly when they are asking the same questions in multiple forums on this site . However, just offering sympathy and a hope that someone will find answers does't necessarily provide any clarity or options for further exploration (and that is not meant to be taking aim at those who do post sympathy or prayers or whatever as they are also supports).
When I post something like my response to your post my hope is that the objectivity I offer will help that person take a deep breath and a step back and look differently and more rationally at what is going on, and hopefully find another way forward to getting some answers. Sometimes the old saying about "not being able to see the wood for the trees" is highly relevant when you are confused and stressed and just want to know what is going on. I've been there and done that (more than once), and an objective viewpoint/analysis from another person has helped me to move forward. I hope you can do so and get some answers.
Thank u Francis B. I sensed your forthrightness and you providing direction into my situation. I do need take a step out of the box and look in. I am seeking 2nd endocrinologist opinion/expertise and 1st time appt is October 29. Also, no doctor has suggested Fibromyoalgia I agree some my symptoms are similar. I have thought about it
BethanyOxe, I feel for ya truly I do, many of us on here have been through the Doc. Merry-go-round B.S., to a very hard Dx! Now, I have to suggest just as I always suggest, because They have helped me, my friend IFWCZS, & 1,000's of other people Doing the cleanses in these 2 Life-Changing Books, & YHVH Sends, Ann Boroch's, "Healing Multiple Sclerosis", & "The Candida Cure", whenever our Small Intestines or Large, get overgrowth of fungal or bacteria, these are called S.I.B.O. OR L.I.B.O. or Candida albicans candidasis, & causes Leaky-Gut syndrome, & our Precious Immune Systems start to attack our bodies! & causes a plethora of auto-immunes 😜
Now, whenever we start to cleanse that bacterial, fungal overgrowth, & heal the leaky-guts & we can become normal again!👍😍
Try this, your body will thank Ya L8R!👍👍Justt Caring For you, & change your food-diet...stop eating pig,pork,bacon...those have bad-parasites(suicidal)😡👿😈devils! Be careful,
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Saw doctor for follow up on leg pain today
Hip pain... still...
Need neck surgery due to spine degeneration and other lesions with sliding bones to my throat and some cut of spine tissue in the back
It is what it is!
New here-going to MS clinic this week
