[salukigirl]

First off I'm new....howdy. Well I have been dealing with this for close to a decade now. Starting at around age 17 I started having little 'episodes' where I would get extremely lightheaded, feel like I was about to throw up, half the time I would fall over (but sustain consciousness the entire time) while my vision went completely black. Then I would have to just wait it out until everything went away and I would sometimes have tremors afterwards but not always. Then after about 2 years of that (and being diagnosed as hypoglycemic even though my glucose levels were normal) they subsided.

Well recently they have come back, and full force. Now, in addition to everything before, after those spells I get a tingling sensation (especially if I bend my head forward while the episodes are happening) that starts at the back of my neck and wraps around my face then spreads throughout my body. After I will have tremors for, sometimes, days at a time. I also have started getting random bouts of ringing in my ears and every now and then my right eye goes blurry for hours at a time.

I went to an ophthalmologist who told me these were seizures and was referred to a neurologist. So at my first appt. he did all the tests like "walk on your heels" and "now walk on your toes" and pushing my arms down while I pressed up against him etc... and said my motor skills looked okay. Sent me to get an MRI (without contrast dye) and a CT with the dye. He did not mention any lesions in the MRI but noted a nodule on my thyroid found during the CT scan but says this is probably not causing my symptoms.

Now he is sending me in to the hospital to get this Holter monitor on my heart and I just have this gut feeling that it's MS. Every symptom I have kind of points me in that direction. And I have brought it up to multiple doctors and what they always say is "well the symptoms are there but they're not in the right pattern". What does that even mean? I'm also not sure that you can really see lesions clearly without using dye during an MRI.

Right now typing this I am having a burning sensation through my back that just wont go away. I just want a freaking answer already. I feel like it's MS but no doc will listen to me. Any opinions or advice?

[Dejibo]

Howdy! sorry you had the need to seek us out, but glad we could be here for you.

Please understand that there are more than 100 diseases that can cause the same symptoms as MS (including lesions) and its hard to sort thru them all, esp when you dont fit into perfect patterns, which most of us dont.

Yes, you can see lesions without contrast dye. The dye causes them to light up when they are in an active phase. If your MD doesnt believe you to be in an active phase when the MRI is being done, why expose you to the contrast dye unless he needs to. It can cause headaches, and be tough on the kidneys.

You sound alot like my daughter when she goes off her celiac or gluten free diet. she gets very shakey, jittery, off balance...anyway, not saying you have it, just another thing you may want to check out.

Have you been tested for Lyme? Lupus? Thryroid? B12? D levels? Sjoghrens? Celiac? ...see where I am going. The medical community will normally start out with a list of 100 things that it could be, and start crossing off the easy ones to prove or disprove. btw, a nodule on the thyroid is very common. shouldnt prove consequensal either way. PLEASE keep a journal and keep track of what tests you have had, and what the results were. Its best to be your own advocate. If after the routine stuff shakes out normal, and you still believe you have MS,then it may be worth a trip to an MS center. Even if you only see them for the initial round of testing, and then stick with the local neuro for treatment.

PLEASE be aware that once someone writes the MS word on your file it will forever change the way you are viewed by insurance companies, and some work places. If you have a chance to get disability stuff now, DO IT! get your ducks in a row BEFORE you get any label.

I hope you find the answers you seek. I am sure more folks will chime in soon.

[salukigirl]

I understand that these symptoms can be pretty broad when it comes to actually diagnosing and that docs don't want to dx me with something without being 100% sure. I have had fasting and non-fasting bloodwork done which showed normal levels for everything, including TSH and free T4. My mother has lups and RA which I told the neurologist about and he didn't mention that even being a possibility.

One other symptom that I can't be sure whether it's related or not is that I seem to not be able to breathe in any hot surroundings. I can't even take hot showers. I can't be outside when its too humid because I can't take in a full breath and I start to feel faint. I'm not sure if that's just a symptom of some kind of asthma or if it could be related to this whole deal of symptoms.

I was diagnosed with Lyme while I worked in upstate New York and I received antibiotics for 30 days and that was it. I grew up in SW Ohio which is prone to ticks also so I guess theoretically I could have gotten it while I was younger and had a reinfection or been bitten again. However, when they tested me it came up negative. But they said within the first month, false negatives are common and I showed all the symptoms so they gave me the doxycycline anyway.

I guess what I am so aggravated with is that fact that they just brush me off. They will give me a dx that doesn't even fit my symptoms or test results, and refuse to look at me further. The neurologist wants me to wear a Holter monitor for 30 days. However, my insurance wont cover the newest version and will only cover the older one which runs off a land line.....which I don't have. So the only time I can transmit my heart rate is at work which means I have to have an episode while I'm there or they will never be able to track it.

I have to go to a family doctor for an ultrasound and a fine needle aspiration on my thyroid nodule because I'm only 22 and it was a single nodule, not a cluster. My first thought was that it could possibly be pressing on a nerve or an artery causing these episodes but when I mentioned that to the neurologist he said no.

I'm definitely going to bring up all symptoms to my new family doc though. Having gone to the opthalmologist also, he said that my eyes were fine and that they aren't ocular migraines. Thanks for the info. I certainly didn't know the other things like B12 levels could cause this. I will look into that also.

[Erin524]

You were diagnosed with Lyme and they havent taken that into account?

Lyme is one of the MS mimickers. From what I've read about it, the Lyme spirochetes (bacteria) likes to hide. You could have a flaming case of Lyme and it wouldnt show up on the tests. Some Lymies told me that the antibiotics dont always work...that they've had to get repeated treatments of antibiotics to knock back the Lyme bacteria. Some of them ended up still having a chronic Lyme, or neurological Lyme...again, that's from what I've read about it and heard from some Lymies.

If you mention it to your doctor, dont try to push him towards diagnosing you with Lyme. (dont be like I was. I got all excited because I was sure it was Lyme and not MS, and apparently that set off the doctor's hypochondriac warning systems)

I would just calmly mention that you were diagnosed with Lyme once, and ask if that could have anything to do with your symptoms, and then dont push...maybe they havent read that in your records or they're just discounting it because you had antibiotics.

(I still have suspicions that my MS is actually Lyme, I just cant get any doctors to take me seriously on that)

I hope you dont have anything serious and that it's not Lyme or MS. MS sucks rocks and I hope you dont have to join our exclusive club because the membership dues (all the annoying symptoms) are just crappy.

[salukigirl]

I was dx with Lyme in July of 2008. The symptoms have been happening since 2003.

[SallyC]

Welcome Salukigirl. Sorry for your illness and pain, but so glad you found us.

Sounds like it could be MS or certainly something neurological. Do your Docs agree or do they dismiss MS. What tests for MS have you had?

It could also certainly be Lyme. What meds have they given you for the lyme. I believe Lyme can be cured??

Let us know how it goes and good wishes for you..

[salukigirl]

Since the symptoms have started I have tested negative for Lyme and they started about 4 years before I got tested so I'm pretty positive it's not Lyme disease.

When I brought up MS to my neurologist he said all my symptoms were there but in the "wrong pattern" whatever that means.

I did google deficiency in B12 and the neurological symptoms that come along with being deficient for a long time are pretty much word for word what I'm experiencing. So I calld my neurologist and told them to hold off on the heart monitor for now. I have a family doc appt. on the 23rd and I'm going to ask for bloodwork on vitamins like D and B12 plus things like folic acid. If those things, plus my biopsy on the thyroid nodule, all come back negative then I will go ahead with the holter monitor.

Lyme can be cured but there is a lot of controversy in the meds they prescribe now. The routine medication is 30 days of doxycycline which is a broad spectrum antibiotic (and what I was prescribed). However, some docs believe that this doesn't entirely get rid of the bacteria and that it can lay dormant for a long time until stress or other factors induce a relapse (like mono). However, I know what Lyme feels like and it is completely different from this. These symptoms have been going on for years. Having had Lyme, that feels like my joints are in a vice and I just cannot move whatsoever.

[Mariel]

Maybe a vascular problem. I have vascular problems because I have other diseases too.
These are NOT blockage of major arteries, but microvascular closures (see the other posts on Microvascular stuff on this forum). Mine come from thick blood (too many platelets and red cells crowding the small vessels). But this SHOULD come up on bloodwork for you if you have had CBC's. If you have a copy of your bloodwork, look to see if either platelets or red cells are listed H for High, or + for high. I had high platelets for two years on these tests before I asked the hematologist WHY I had high platelets, and it was only then he told me I had this other disease, which is one of the myeloproliferative diseases.

I too had temporary blindness from time to time in the early stages of this (very short
blindness, ten minutes). I was relieved by taking 250 mg of non-flush niacin, which opens vessels.

Another disease which you MIGHT have is Porphyria, which I also have, which is one of the many diseases mimicing MS. But you do not mention abdominal pain as a primary
symptom, which would probably be there if you are pre-menopausal (as estrogen declines, porph symptoms can decline). Porph neuro symptoms can be very like MS, and even in a few people the brain scars can appear.

Hematologists are the ones who usually address Porphyria and Myeloproliferative Diseases. And of course those who are pursuing MS, Lupus, or Lymes disease dx's are not
usually in the Hemo's office.

[EddieF]

Extensive blood work for everything YOU can think of and I heard low electrolyte levels were a cause of seizures during cancer treatment (that worked). Get your mri's on cd and study/learn them yourself.

Wish you luck.

[salukigirl]

I'm looking at my bloodwork from about 3 years ago and hemoglobin plus hematocrit are both listed. Hemoglobin is almost high at 14.6 g/dL when the normal range cuts off at 15 g/dL. Hematocrit is the same. The range cuts out at 44% and mine was 43.7%. I'm not sure if this is the same measurement that you were talking about? No doctor has ever mentioned it as being a problem.

My fam doc did call the other day to get notes on my exact symptoms and I told them I wanted to be tested for folic acid, Vit D and B12 for sure and whatever else they thought necessary. I'm also going to have a biopsy done on my thyroid nodule but honestly, I don't think anything will turn up with that. I will ask about the electrolytes also. I know that antidepressants can cause inhibition of absorption of vitamins and I started taking Lexapro about a year ago. I also used to be vegetarian which I know can hinder vitamin absorption. So I wouldn't be surprised if it turned out to be something very simple like a vitamin deficiency that is mocking MS.

I am only 23 (well as of this coming wednesday) so the diseases that go along with pre-menopause probably can be ruled out. My mother does have both RA and Lupus which I have asked about but my symptoms are not confined to one side of the body and I have no rashes or anything like that to go along with it.

I went out and bought a BP monitor and check my BP every time I have one of these episodes. Normally it is pretty perfect around 120/75. When I'm having these "blackouts" it goes up to about 135/95 so the bottom number goes up considerably. I'm not sure what that means though?