Hi there, I am 46 year old female. I have been hypothyroid for at least 9 years now and last year was diagnosed with Hashimoto's disease. Since about November I have have numbness in the hands - mainly little and ring fingers, wrist and elbow throbbing. Some days my knees are extremly painful.Sometimes when I stand up my left knee gives way. I have noticed my memory is alot worse than it ever was, if I dont write it down then it didnt happen!! I say the wrong words for stuff but usually as soon as I've said it i know its wrong and often I cant find the right word. I suffer from dizziness,vertigo left sided facial numbness and if I'm having a "flair" then I have burning sensation but face isn't red just hot but becomes number and feels like its drooping but whn you look in the mirror it looks normal.Every moring I wake my hands are very pins and needles but not painful when sensation comes back,a few times 1 arm has been completly dead and i had to pick it up with my other hand.I also loose feeling in my right calf muscle,not pins and needles,just nothing and then it just gradually comes back!.I recently had a positive ANA test and my MRI showed white spots, Neuro doesnt think white spots are consistent with MS but hasnt ruled it out....My Dr is also considering Lupus but doesnt want to diagnose this too early incase it is something else....Neuro wants to see me again so guess i jsut have to wait and see......thanks for letting me vent - any ideas would be appreciated, even if our symptoms are the same....luv to chat :o)
Sounds like you do have a good neuro who is investigating everything to find your dx.
Many of your symptoms do sound like MS, but there are also lots of mimics. Usually a neuro will test to rule these out.
Has he said what he thinks the white spots represent?
I am undx, or as we say on this forum, I'm in limboland. I have some of your same symptoms, numbness in my fingers, arms, hands, and legs, memory difficulties, etc.
I've had 2 brain MRIs and a c spine MRI, but they were all clear.
I'm glad you are here with us, I'm sure you will learn a lot and receive lots of support from everyone. Have you checked out our health pages, there is lots of great info there. Just click on the health page icon in the upper right hand side of the page.
Again, welcome to the forum. Always remember you are never alone, there are lots of us here in the same situation and we understand what you are going through.
thx for your kinds words.....its awful not knowing, not that I want an MS label I just want to know what wrong so I can start on that rod to wellness!!!
I have found lots of very good info on here, no doubt we will chat again...
Yup. Limbo can be a very difficult place to be, because there is little help and rarely any validation while you're in Limbo.
I find that I have to self validate quite a lot, which is easier after seeing all the others going through it.
That does little to help if you are finding you're getting more and more symptoms and they are becoming more intrusive and/or painful. So you have to find that 'nice and firm' way of dealing with a doctor to keep looking periodically for what is going on. And key to that is finding a good doctor.
Hang in there. There are lots of limboers here. Nearly six years for me since my first symptom showed up.
Forgot to mention that I have several white spots on my mri too, but negative spinal tap and evoked potentials. So no ms. But I still have so many symptoms that my new doctor wants to keep an eye on me to make sure that I'm doing ok.
wow thts a long time to be in limbo!!! My Dr is very good, have been with him for 19 years now. He is really not sure what is going on and wants to see the report from the Neuro before he commits to anything... I know he has my best interests at heart and is keeping a good eye on me...he acknowledged that something is happening - just not sure what! I currently work shift work which includes 2 x 12 hour day shifts and then 2 x 12 hour night shifts..I've been very fatigued lately and he even said he will give me a med letter to say i can only do a half night shift...I work as an EMD and answer emergency calls and dispatch ambulances so its fairly vital i am awake and alert!! lol... I think between me my Dr and my Neuro we will get some answers - eventually!!!
When do you go to the neuro? And, do you have copies of your MRIs? You mention white spots, but do you have the language the radiologist used?
I was dx'd with MS in 07, and as you've already experienced here, we are just a garden variety of experiences. I hope you like it here.
How are you doing w/the Hashimotos? My neighbor has it too, and it's crazy because before she was dx'd with it, she was describing things to me things that were happening to her and many of those things were "exact" to my symptoms. I was thinking - holy c rap! What are the chances of her having MS too -- and her and I being neighbors. So, I can totally relate to what you are going through, just hope a good Dr. is able to weed out what-is-what for you.
Looking forward to hearing about the reports you have so far.
Take it easy w/that fatigue and driving, it's very unsafe (I did it too - so not yelling at you for it, promise).
thx for the welcome... yes Hashimoto's is not nice...I still don't know too much about it but my understanding is that if your thyroid levels are good then the Hashi's 'should' be controlled. My TSH was 1.1 which is good for me. I wonder if thts why my GP is being cautious with giving me a label too soon because Hashi's, Lupus and MS all seem to borrow symptoms from each other..I still haven't seen my Neuro re the MRI he just rang me and said about the white spots he also mention blocked arteries but not much else, and i didn't know what to ask...waiting for next appt...going back to my GP in 4 weeks and will be writing EVERYTHING down - each time I leave I remember stuff I was meant to ask...
just had a call from the Hospital, the Neuro wants to see me tomorrow....he is going on holiday for 2 weeks next week and wants to see me before he goes......not sure what to think about that...good news for me that he can expain the MRI - hope its not bad news he needs to tell me!!
thx for that - I am in New Zealand, we have a public health system that you don't need insurance to get access too....thx for the advise re - show me my MRI and explain the white spots...he said that the placement of the spots doesn't match my facial numbness.....I have written a heap of stuff down in a note book to take so I dont forget anything.....(mental note to self make sure note book is in bag!!) I will update later when I get back this arvo.
Hi and welcome... I also have Hashimoto's disease which causes hypothyroidism so I'm guessing you've had Hashimoto's for a long time. Basically what happens with Hashimoto's is the thyroid is attacking it's self. I also have fibromyalgia, PPMS (primary progressive multiple sclerosis) and osteoarthritis... all autoimmune diseases. I have a strong family hx out autoimmune diseases but I'm the only one with MS or I should say I'm the only one aware they have MS in my family. I have lesions, but I've also undergone a LP (lumbar puncture) with positive results. I would ask the neuro for a copy of the MRI (CD or films) and the reports. Then you can have them for your records... either to bring somewhere else or just to have for your records. Good Luck and keep us informed, we will all be thinking of you.
~live as if all your dreams came true~
I only was labelled with Hashi's last year, but guessing I've had it for much longer. I will ask for a copy of MRI (thx) - how does PPMS differ from MS??? There is also a history on my mothers side of thyroid problems and arthritis. I have white spots / lesions which neuro doesnt think are linked to my facial numbness. Hope to get answers today but I'm soooo nervous. Hope he doesnt do my blood pressure - will prob be thru the roof lol...
OMG, I am sooo frustrated by Neuro appt....was seen at 1st by registra - she went over my symptoms again and did a few tests, she then explained that the white spots are in the front white brain area and are not linked to my symptoms......doesnt think it is MS and if i wanted could have LP but even if anythig showed would still not confirm MS or offer any treatment because I wouldn't be considered 'bad' enough.....possibility i may of had mini stroke/s but not sure, take aspirin in case!!!!!! said not Lupus as ANA was not high enough even though it was positive!!!
Neuro came in and kind of went over MRI said white spots where not where they would expect them to be with my facial numbness etc couldnt explain it too me. His ph rang, he left room to answer it, came back in and said he needed to go and said registra would answer any other questions!!!!
I just want a label, then i can move on and start on that road to wellness. At least i would know what other symptoms I would need to look for....grrrrrrr feel like they have totally pushed me aside...dont have text book symptoms or MRI so cant help you sorry...come back when you get worse....feeling quite negative right now, sorry :o(
I think you need to see a different Neuro...
PPMS is MS it's Primary Progessive Multiple Sclerosis in short... there is no treatment thus far it runs it's course and they treat the symptoms. I don't have "flair ups" it just runs on a steady decline.
Now to get back to your appointment... it there another Neuro you can see... check into a large hospital's clinics... I go to a MS clinic at a large hospital in Boston, MA they are wonderful... they did my LP and I was so impressed I changed to them. Don't stop until you find some type of answer that you can feel comfortable with...
Keep us informed!
~live as if all your dreams came true~
I'm sorry your neuro appt didn't bring you any closer to a dx. I agree totally with Debbie, find a better neuro!!!
You deserve an explanation of your health problems and continued search to find a dx. Keep pushing until you find a neuro who will listen to you and be determined to give you answers.
Take care of yourself and I am hoping for the best for you. Stick around with all of us, and we will support you as you continue to search for your answers. You are never alone, you have all of us here who understand exactly what you are going through.
Debbie - So is PPMS sort of the beginning of MS and when your symptoms are really bad to they change it to MS????
What are your symptoms for PPMS?? Did your MRI show positive lesions for MS??
so you say you dont have flair ups - what are your symptoms?? and do you have the same symptoms all the time or are some days worse than others???
sorry heaps of questions but you have hashi's same as me....would you recommend LP, my Neuro said i could have one if i want but it wouldn't have an impact on his diagnosis even if it was positive - mainly cos he said the lesions weren't in the right place for MS..
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