This Is MS Multiple Sclerosis Knowledge & Support Community

Hi All lovely MS people,

Thanks for letting me join, and i hope that you dont mind me spilling my problems out here! I also hope that some people searching for answers, like me too, might get help relating to some of my frustrations, and know you're not alone!!

Cant believe its been a year in March since the tingles started. Ive had 2 MRI's (one brain, one cervical neck both with lesions) and a neck CT scan. Ive been to numerous GP's, 2 optometrists, a physio, an osteo, chinese medicine, the hospital, regular psychologist, massage therapists and 1 neuro already in October, and new neuro who specialises in MS on the 15th March.

What a credit card bill. I wish i had arranged health insurance earlier.

I've almost given up a couple of times. Many times left doctors/hospital/specialists offices feeling frustrated, in tears, offended, crazy, and deflated. So dramatic!..But I know you know, that's how it feels.

Started with the tingles left Jaw, neck, ear and arm. Motled vision and feeling a little dizzy. No headache! Then over next 6 months light tingles shoulders, chest, breasts, back of thighs. Lips numb. Original GP said "stress" or "muscular" or "migraine". After a couple of months i begged him for a neuro appointment - "Nah, i dont think you need to see a neuro, but if you REALLY want me to, then i can give you a referral". 2nd GP opinion - Migraine;3rd GP opinion - overweight;4th GP - Stuck with him for last 4 months, and he believes, and always has, that its MS. He referred me for the Brain MRI which came back with multiple (15) 1-2mm lesions in the white matter of both frontal lobes. Atypical for demyelination. (YAY!!), but... cannot be excluded considering clinical presentation.

In Oct 12, had a horrid neuro experience. He said the lesions look like MS, but are not in "right place for MS". I thought it was all over, and very happy with that answer!!
Then he seriously said "Google doctor high cholesterol, and sleep apnea, see you in 6 months for a check up MRI"!! During the appointment he also said "do you have a boyfriend, and do you sleep in the same bed together?" trying to get at do i snore. Im sure he could have phrased that differently. He also said "what do you mean, 'Weird and Wonderful'?" when i was talking about pin pricking. He just picked me apart and was so blunt with no tact, when i had so much hope in him providing an answer. I was so mad, frustrated and felt crazy, i cried. Alot.

I thought it was all over, until January when my physio sent me for a cervical MRI incase of a pinched nerve. Came back with spinal cord lesions.

Symptoms started in March 12. Next "episode" of intense symptoms October12 then recently Feb 13.
*Waves of tingles over scalp up back of neck, over to forehead and down sides of face.
*Pin pricks like a bug biting me, or stabbing of a pin, mainly in upper body of chest, arms, shoulders and head (and finger tips).
*Feet & lips regularly numb.
*Recurrent short bursts of chest pain (went to emergency, ECG- chest wall muscle spasms)
*Dizzy, nausea, head spins, while desk, standing, feel drunk
*Motled vision again, pressure behind right eye. Pressure on Scalp like bruising.
*Left eye lid twitched for a straight MONTH! ARGH!
*Just stopped talking midsentence. Frustrating
*Think one thing, then frustratingly do another
*Tongue completely numb for about half hour
*Very sore neck and shoulders, leg and joint in both left hand and right foot
*VERY tired. So tired i could go back to sleep all day, and sleep all night again with no trouble.
*Now i shake. ALL the time. Feel like im shaking from the inside out. Hands physically shake.
*Muscles twitch all over the place
*Tingles predominantly up and down left leg up to belly button and back down again
*The last week i have Dizzy, nauseous, light headed like i might faint (doc says "its from whats going on with you." (BP excellent)
*Tired and unmotivated. Fatigue.
*Depression takes hold some weeks
*Eyes blurry and mottled and takes concentration to focus.

All blood tests have been done. No answers.

Im being realisitic now. Im not getting my hopes up, or putting ALL my faith into this next appointment. I have some though. Im at the point where im facing this fact, that its very likely MS. My GP said i have all the symptoms, but the tests just have to prove it. I just want to know. If its not MS, what the hell is it, and if it is, just tell me so i can move on, not be in limbo and manage it, and stop being so scared, and being hyper-aware of my body and whats happening to me!! And tell my boss, so she stops thinking im a faker!

Dear twitch,

I feel how you must feel. I've been there too. Afraid and lost my passion to live....I thought i might die because of whatever disease i had, but after two years experiencing various weird symptoms and 4 months searching in so many hospital, i got diagnosed with MS. Fiuuhhh...finally an answer...but not a good one.hahaha

Well, don't worry u'll find out what disease that u have. We have doctor above doctors in this world. He'll sure show u the answer.

And there's a lot of people here with so many experiences and knowledge about MS who can help u.

Take care n GBU...

Thanks so much Linda for listening.

Im really glad that your search has ended, 2 and a half years is a long time. Good on you for your persistence, and not giving in when some of the doctors do.

I know MS is frustrating. The limbo part, for me now, is frustrating, and the GP today was trying to make me accept that MS is very likely answer for me.

Dear twitch,

My search for my disease has ended, but my search for the cause n the cure hasn't ended yet. I hope it's getting close to the answer we're all searching for. But i don't know when, just hoping God would direct me and all the others to the answer.

Frustation always be a part of my life now, but if we still have hope, we can go on through this.

This is not the end, until God says so.

Dear Twitch,
I am sorry to hear that you are going through all this too! However, your story has helped me, as I am going through almost verbatum the same things you've mentioned. Minor differences, such as my tingles, I have described as vibrations, and it happens only in my feet up to almost the knees. I had an MRI yesterday, the new dr. I just seen two days ago is taking this seriously, THANK GOD, because I was ready to give up! I straight out told this new dr., that I didn't feel my previous doc was listening to me, or even cared. I also was very honest with her that I won't continue to live this way, I have been through some REALLY awful crap in my life, but this just might win. I am hoping an praying to have some answers Monday, does an MRI always answer the question: Do I have MS? Any input is appreciated! Bless you Twitch and everyone suffering through this!

Hi Rose, Im so glad you joined, and im sorry that you're going through the same stuff I really hope that your MRI next week on Monday gives some answers. Come back and let me know what they say.

The first MRI that i had came back with lesions, and when i saw the neuro the first time, he said that the lesions are what you would see with MS, but they are "not in the right place for MS". (deep white matter of both frontal lobes). So i left thinking that was all great and back to the GP to keep on looking.

Then my physio wanted to look for a pinched nerve etc, so sent me for the cervical MRI and they found more lesions in the spinal fluid, so im looking forward to seeing a NEW neurologist, which i know that the new one specialises in MS. So i hope that he will be able to tell me if he has seen this before, any further tests (spinal tap) or where i should be heading next.

Be brave, just breathe in the MRI and im so glad that you havent given up and have found a new doc that is listening. Thats so important to feel heard and understood, and know you're not paying them money just to visit and a chat, and there really is something wrong!!

You too Linda, keep on trucking!!

Hannah

(P.S. im soooo glad the shaking has stopped this week! still blurry and dizzy, but no shakes - aaah peace! Oh and PPS. I would also describe a symptom as vibrations too, usually in my shoulders, arms. Its like a really fast and intense muscle spasm that lasts about 30 seconds but doesnt hurt, just vibrates.. weird

Twitch wrote: (P.S. im soooo glad the shaking has stopped this week! still blurry and dizzy, but no shakes - aaah peace! Oh and PPS. I would also describe a symptom as vibrations too, usually in my shoulders, arms. Its like a really fast and intense muscle spasm that lasts about 30 seconds but doesnt hurt, just vibrates.. weird

Welcome to ThisIsMS, Hannah; I am glad that you and Rose both have joined us here.

I have also described some symptoms as "vibrations." This reinforces my idea that MS is not "just" a neurological disease; I think it is more accurately described as a neuromuscular disease. In fact, I think the intention tremor I experience is a battle between two opposing muscles – the agonist and the antagonist involved in the movement. I think the skeletal muscles (and smooth muscles of the bladder and the intestines) have dysfunction because of insulin resistance. Just thinking…

Hi Lynda, Rose (how did your MRI go?), and Linda,

Thanks Lynda for your reply! Its such a weird sensation the vibration, mine was more in shoulder/left arm muscles.

Just a quick note, looking forward to some answers next Friday.

A little clue!! After a year of all this, doctors tests etc, and researching, i have had a little bit of a breakthrough this week and wondering if i have a big clue as to what this is.

I was soo shakey and dizzy i went to my regular doc the other week (as mentioned above) and he said, oh its just whats going on with you (MS) etc etc

On Tuesday, i almost fainted i felt sooo dizzy after having a chat with someone at work. I felt nauseous, blurry, sweaty and really dizzy ofcourse.
I couldnt get in to see the reg doc, so i saw another GP. He checked BP - perfect, Bsugar - perfect, ears throat - perfect, checked my chest...
I told him ive had a bit of a cough since christmas, he checked my chest and said there was a wheeze, (which my reg doc also said - and upped my athsma steroids) but he then asked me to take 2 big deep breaths, i was so dizzy i felt like i was going to pass out! He had to hold my hand, everything went fuzzy and blurry. I felt sick.

SOO! He said i was Hyperventilating.

Now, when i looked into this, long term, chronic hyperventilation can cause tingles (although listed in specific areas - i have them other places) - not sure about pin pricking, muscle twitching (specific areas - i have them other places) fatigue, depression, dizzy, nausea, blurred vision, sharp CHEST pain - and ER said that it was muscle wall spasms.

I have had issues breathing, and have noticed myself shallow breathing, and then taking a big breath, then huge sigh's. My boss says "thats a big sigh for a little girl" often lol - even though i dont feel stressed, it seems like im sighing because im cranky/frustrated- but im not. I get puffed regular walking/upstairs. I thought i was just getting too fat. Cant walk and talk.

Im curious to let the neuro tell me what he thinks, suggest this and see what he says.

I also looked at brain and spine lesions with hyperventilation, it might be ischemic damage? Eeep.

Thank you all, i really appreciate you being here, so close, hope not too far away with finding out now!!

xx

Dear Hannah,

How i wish u will never get an MS diagnosis or any other uncurable diseases. There's a good post here at TIMS that revealed many diseases can mimic MS in symptoms or lesions. I think u should check it and give the list to ur doctor / neuro. I gave it to my neuro for him to read. I want to ask him, what make him so sure that i got MS.

Here's the link to the forum ("Differential diagnosis of MS-very extensive list" by HappyPoet in "General Discussions"):
http://www.thisisms.com/forum/general-d ... 21796.html

I really wish u a good luck in ur searching. Hope u'll get treated with the right treatment and it could cure u from what ever disease that u have right now.
My prayers for u, all the best wishes for u.
GBU.