This Is MS Multiple Sclerosis Knowledge & Support Community

I'm a 47 year old female with no real health issues. In December I got what I thought was a sore throat. Pain when I swallowed. It went away but then my cheek and teeth hurt so I went to a dentist. He didn't find anything. It didn't go away so I went to my doc. The soft palate on one side was slightly swollen. She said sinus infection. I did three rounds of antibiotics but I got worse. She sent me to an ENT and while I waited I started doxycycline. While on that I started getting burning areas on my skin, couldn't tolerate the sun, attributed to the doxy since that can be a side effect but I never got redness or anything just intense pain. I had to cover up head to toe to go outside! My arm was always falling asleep too so I'm figuring I need to get a massage and do more yoga and stop being a ball of stress.

Still waiting for ENT appointment the cheek pain got worse. By the time I got to him it was full blown trigeminal neuralgia. He scoped me and found nothing. I had a CT scan of my head and it was fine. He put in for an MRI of my neck, that was 4 weeks ago and because of insurance issues they couldn't get me in for it until yesterday. It came back normal.

Last week the burning on my skin got worse and was my entire body. I was also getting this feeling like I was being stung or little hot ashes were falling on me. I had been off the doxy for weeks now. I called my doc Thursday and she wanted me to go to ER but there was no one to cover for me at work so I ignored it. It didn't seem life threatening. Friday morning I wake up with two little blisters on my hand that sting like mad and pain in areas that feel like I had an injury but nothing there. The sight issue came back while I was working in the morning. I couldn't see well enough to drive safely because of flashes and just a strange sense that my eyes weren't moving right. I was only a mile from the ER so I went there. They did a brain MRI said it was normal and to go to neurologist. By then my sight was fine so I went home. Saturday was uneventful, no burning just felt like I walked through stinging nettles occasionally. I worked all day without any issues.

Sunday i woke up at 3 am with buzzing in my hands and feet. By 6 am couldn't walk well (but I could walk it just felt weird like my legs weren't there but I could still feel them) or use my arms because when I tried they felt fatigued and painful and my fingers wouldn't cooperate with anything. My whole body was feeling like I was being electrocuted. I could barely text and I couldn't hold the phone, my neighbor took me to the ER. By the time I left ER (they said don't come back unless you have breathing or swallowing issues-go see a neurologist and it appears to be MS but don't be frightened, it's treatable) I was so weak feeling I couldn't walk without holding on to something. I had to look at my feet to know where they were. Something felt like my calves were being squeezed and my hands felt huge and floaty. By the time I got home the buzzing turned into massive buzzing, tremors, full body twitching, pain and hot ashes everywhere. The did some testing in ER and said my strength was fine. All my blood work was normal. B12, CMP, CBC, folate, syphillis, thyroid, ANA and CRP and sed rate. My anion gap was off and there were a few ketones in my urine but no one seemed concerned.

Monday morning I seemed a little better and started thinking it was in my head but as the day went on it got worse and worse again, same buzzing and twitching. By nightfall I was in so much pain with spasms in my hand and feet and electrical shocks everywhere I couldn't even function.

Tuesday I'm up at 2 am a buzzing twitching mess but the pain isn't as bad and I can use my thumbs. My neck feels less tight. I go for the MRI and something about the vibrations in the machine set me off into a disgusting twitching mess now my tongue is involved and my lower lip. I had trouble walking and fell to my right afterward but then I was ok. We went to breakfast and by the time I was done eating almost all my symptoms were gone. We go home, I take a nap and get up and feel great. I try to walk to the laundry (1/3 mile with a steep ramp up) and I get to top of ramp and my leg muscles felt like 1000 lbs of weight attached. I could rest for a minute and walk another 15 feet and it came back. The blisters on my hand increased from 2 to 16. They hurt so bad if you touch them my entire body jolts. By afternoon I was fine and feeling great so we go on a walk, I was so worried about losing strength I wanted to keep moving. We walked about 3/4 of a mile with no issues. I'm almost home and it hits again. This time full body heaviness, odd squeezing sensations, tremors again and now I have pain in my eyes and my eyeballs are tremoring like mad, my tongue feels weird and the tremors feel like shudders. My boyfriend places his hand on my legs and can feel them tremoring. He has me follow his finger with my eyes and sees that they are tremoring weirdly. It's not in my head. I put on polarized sunglasses and pull a hood over my head and it helps. He says he can feel me tremoring and twitching even when I am sound asleep.

Today I am weak with odd sensations in my mouth and throat, involuntary jerking of my head and hands. Shivering like tremors and involuntary jerking. Cramp in my hands. Only two fingers will do what I tell them to do. My eyes seem better but I woke up unable to open my eyelids (panic!!) but now that's fine too. Only lasted a few minutes. I can swallow and breathe fine.

Oh, and emotional lability, holy crud. I cry at everything and honestly I rarely ever cry! I'm not an emotional person at all. I'm extremely independent, strong, capable. This is ridiculous.

The ER doc was aware of the blisters and said they aren't related, probably bug bites. I don't believe him. But I also know if it was some sort of shingles it wouldn't affect my entire body this way so perhaps they are incidental or just my body reacting to the incredible burning sensations there?

I have neuro appointment tomorrow. It's been horrible waiting this long to be seen.

While talking with my adult children, my boyfriend and my closest friend they remind me of all the things I have brushed off or ignored since my early 30's. Occasionally when severely fatigued my right eyelid would open and close slowly when I blinked. If I hiked uphill or walked for a long time on pavement my right leg would go numb and drag (thought I had a small back injury that caused this) Severe back pain and leg cramp when I squatted and it would last for days to where I was too weak to get in and out of car or go up steps. Electrical shocks in my legs for hours after running or fast walking. The past two years I have had episodes of stinging itching horridness in my groin-seen by multiple gynecologists who couldn't find anything. It would last for months then disappear suddenly. When temperature dropped even slightly the thumbs and first two fingers of both hands would go numb (last 7 years or so) and most days I couldn't do up my buttons or tie my shoes attributed to nerve injury from my job. I was training for barrel racing when I was in my 30's and had to stop because I would lose feeling in my right leg after riding that would last for days. For the past two years I've had extreme fatigue I thought was from my job. I needed 10 hrs of sleep daily and on my days off sleeping up to 18 hours. Last October I had blurry vision for 6 weeks that we thought was due to progestin I had started taking. I stopped it immediately and my sight got better 4 weeks later. I've also developed ridiculous allergies, breaking out into hives for months on end. Beginning this January I noticed my strength getting less and less and shaking whoever I tried to lift anything or work out or do yoga. Thought I was just weak and needed to try harder.

Anyway, there's my story. Obviously undiagnosed and frightened that neuro won't be able to diagnose this either. Keeping a log of everything to bring to him and hoping and praying I wake up tomorrow and it's gone. I can't be out of work this long!!! I have to be able to drive and do physical things all day long! Frustrated, scared, angry.

hi and welcome ellie, sorry to hear about what you've been going through. not a diagnostician, can only offer the same suggestion i do for all - might be easy since you are documenting anyway. if you can track your food fluid med and supplement intake, have that assessed for adherence to essential macro and micronutrient intakes, you can at least find out if there's a possibility mal or mis nutrition is playing a part. at a minimum, making that effort will help you gain certainty that none of your symptoms are the side effects of a sublinical nutrition problem.
if you can, spend equal effort on pursuit of health as you do on pursuit of diagnosis. search symptoms in conjunction with terms like nutrition.
hope you feel better and get some answers and relief soon

EllieB wrote:Sunday i woke up at 3 am with buzzing in my hands and feet. By 6 am couldn't walk well (but I could walk it just felt weird like my legs weren't there but I could still feel them) or use my arms because when I tried they felt fatigued and painful and my fingers wouldn't cooperate with anything. My whole body was feeling like I was being electrocuted. I could barely text and I couldn't hold the phone, my neighbor took me to the ER. By the time I left ER (they said don't come back unless you have breathing or swallowing issues-go see a neurologist and it appears to be MS but don't be frightened, it's treatable) I was so weak feeling I couldn't walk without holding on to something. I had to look at my feet to know where they were. Something felt like my calves were being squeezed and my hands felt huge and floaty. By the time I got home the buzzing turned into massive buzzing, tremors, full body twitching, pain and hot ashes everywhere. The did some testing in ER and said my strength was fine. All my blood work was normal. B12, CMP, CBC, folate, syphillis, thyroid, ANA and CRP and sed rate. My anion gap was off and there were a few ketones in my urine but no one seemed concerned.
..............

I have neuro appointment tomorrow. It's been horrible waiting this long to be seen.

Welcome to ThisIsMS, EllieB.

First of all, you have real symptoms – these are not "all in your head." It is good that you are keeping a log to show to the neuro at your appointment tomorrow.

You say that at the Sunday ER visit blood work was done and all was normal: B12, CMP, CBC, folate, syphilis, thyroid, ANA and CRP and sed rate. Since there is no mention of vitamin D, I assume you did not have the vitamin D blood test called "25-hydroxy D" – I suggest that you request the neuro you see tomorrow to order one for you. (Also, request your own copy of the test result so that you have the actual number.)

Vitamin D deficiency is VERY common today.

Over 1/2 of Americans Are Vitamin D Deficient - Are You at Risk?
with James E. Dowd, MD, FACR, ABIHM (13 min.):


Vitamin D is necessary for every cell and system in the body; a deficiency can result in ANY kind of symptom – even yours. A simple, inexpensive blood test can rule out a vitamin D deficiency as the cause of your problems.

The California-based group, GrassrootsHealth (http://www.GrassrootsHealth.net), has brought together 40 vitamin D experts. They recommend that vitamin D levels be at least 40-60 ng/mL. After you are tested, you can discuss with your doctor how your level compares to the GrassrootsHealth recommendation.

Thank you both. No I hadn't been tested for D in several years but my last test was 30 ng/ml which I can see was co sideted normal but probably not. I will ask for that test tomorrow. I am taking some vitamins today (D3 red krill and barroca)

EllieB wrote:The blisters on my hand increased from 2 to 16. They hurt so bad if you touch them my entire body jolts.

I've never known painful blisters to be associated with MS. That almost sounds like some type of infection.

It's possible they are incidental? My WBC is good. No fevers or swollen glands. Neurologist today. My symptoms are greatly reduced today but not gone. I'm really hoping that he figures it out fast. Thankful for the reprieve, though, it's nice to have reduction in pain and ability to walk easier! Will ask for the D test and hoping I didnt mess up any results by taking this supplements yesterday.

EllieB wrote:Neurologist today............ Will ask for the D test and hoping I didnt mess up any results by taking this supplements yesterday.

I doubt that starting vitamin D supplements yesterday will affect your test today.

I suspect that the dosage of your vitamin D supplement is nowhere near the amount of international units (IU) that a lifeguard or outdoor worker gets in even ONE day. Historically, our ancestors were making 10,000-20,000 IU of vitamin D every day – they were unclothed, they lived and worked outside, and they had NO sunscreen.

Neurologist thinks Lyme or MS. Drew the D level (hydroxy 25 ) at my request and also a Lyme titre. Lyme takes 7 business days for results. If those are negative then I will have a lumbar puncture. I went for a massage last night which was horrifically painful but I felt good after, looser etc. today I can barely walk and all my symptoms back full force. Frustrating.

EllieB wrote:Neurologist thinks Lyme or MS. Drew the D level (hydroxy 25 ) at my request and also a Lyme titre. Lyme takes 7 business days for results. If those are negative then I will have a lumbar puncture. I went for a massage last night which was horrifically painful but I felt good after, looser etc. today I can barely walk and all my symptoms back full force. Frustrating.

I hope you will share your vitamin D test results, when available… I'm curious to know your level. My level was 24 ng/mL at my first test – frankly deficient.

grr

Results of D hydroxy in- 34.7 ng/ml so I will start supplementing with this and magnesium and prob b complex for good measure hahaha

the informed approach will still be around when and if needed.

EllieB wrote:Results of D hydroxy in- 34.7 ng/ml so I will start supplementing with this and magnesium and prob b complex for good measure hahaha

Rather than doing your own independent unsupervised supplementation program, please discuss a plan and work with your doctors. If your GP (or another doctor) doesn't feel adequate in this area, ask for a referral to a specialist.

GrassrootsHealth-Vitamin D Cancer Prevention Levels with Dr. Cedric Garland (7 min.) Feb 2011


@3:53 Just as an aside, we know that from the National Health and Nutrition Examination Survey that 90% of people are below 40 ng/mL, so the need for measuring vitamin D and raising it is nearly universal in the US.


In another video, Dr. Garland recommends a vitamin D level of 80-90 ng/mL for women and people with MS.

Well, it's the end of week two, but actually closer to three weeks since original symptoms began and three months since trigeminal neuralgia diagnosis. I saw a nutritionist the day after my last post and she started me on magnesium, calcium, b complex, vitamin D (she was familiar with the grassroots site and hey we are in CA!) omega 3 (but I had to stop that yesterday in prep for spinal tap I guess it affects bleeding) Anyway, I'm not expecting miracles but haven't seen a bit of difference. I was really hopeful. In meantime my MRI neck and face came back with no issues, my first in series of Lyme testing so far negative.

My symptoms have increased to include my entire trunk and even my voice. I look like I have Parkinson's. My fatigue is debilitating. I've been trying to work but by mid day I'm so much worse I can't go on. I have a very physical job that requires hours and hours of driving and that's not going well. My employer is being great.

I saw dermatologist today for the blisters which are now on both hands. She thinks it's nothing of importance and probably caused by an irritant of some sort (work gloves, hand sanitizer)

I eat well, lots of locally grown fruits, veggies, free range organic meats as my baseline diet. I live in the south and get lots of sun and fresh air and am very active. I'm finding it hard to see just where things went wrong and left me like this. I am tired, exhausted really, frustrated and feeling like the medical community has failed me.

I picked up copies of my records for second opinions and found the ER claimed to do an EKG and it was normal, also that they recorded my symptoms wrong and said I was in great shape when I left (mind you I got worse and worse while I was there). Then the labs ran the wrong tests, I kid you not. Then the secretary at the neurologist has been rude and dismissive, hangs up on me when I call to ask a question- apparently I am only allowed one question! I finally went in person with a hand written letter to the neuro begging to be seen again. Her response was "after the spinal tap". Which has not been scheduled, mind you. I call daily asking and the secretary sighs and says "it will happen, they'll call you."

Anyway, this is where I am right now. Praying for solution, praying it gets figured out fast. Grasping at straws thinking it could be Lyme (I'm from Lyme endemic area originally, just moved here a few years ago) so holding out hope for those tests to hurry up and get done!

In the meantime I have an appointment with a specialist in Lyme disease, paying out of pocket, but can't get in until later this month. By then all the other tests will be done. I can cancel if it comes back negative. I'm focusing on Lyme because my neighbors were diagnosed and several dogs from my old neighborhood. You never know. We are all told to look for a rash and if no rash you're fine. I've had hundreds of tick bites and likely more that I didn't know about. Now I find out not everyone gets the rash or if you're dark skinned like me the rash doesn't show or just looks like a bruise. Whether or not this is Lyme or Vit D or B12 or MS or transient weirdness I sure am learning a lot more than I knew before......

Thanks everyone for letting me vent here. I appreciate this forum more than you can know.

hi ellie, if comfortable doing so you could post the detailed nutritional regimen the nutritionist has given you. by detail i mean the specific form and dose of each supplement, per pill, how many of each pill per day, how the intakes of each are timed in relation to each other.

have any serum vitamin and mineral tests been done and if so can you get your own copy of, and share, results.

did your nutritionist ask for a 3 day diet diary or similar, and if so are you able to post specifics.

feel your pain re frustration with health care pros. a real let down sometimes.