MS, Devics Disease? So many symptoms...

[Teri_M]

Hello to all,

Previous written on a post a few weeks ago (just trying to keep up with all of these crazy symptoms).

I am a 37 year old woman. I have always been a natural at sports. Most recently, ready to compete in a level one bodybuilding competition about 1-1/2 years ago. I am also a recovering alcoholic - I have three years sobriety and recently picked up my three year medallion.
About a year ago, I would pick up my dog (puppy at the time) and I guess it may have been the way I held her, my back was slightly arched and I would get this extremely painful aching pressure in both hamstrings, enough so that I might drop to the floor. It would alleviate once I put her down and stood up. It hurt terribly. I have also had tendonitis in my right hip from weight training that can act up now and again. It felt a bit numb around this time. I didn't think a whole heck of a lot about it. Went to the family doctor - he looked a little curious. Gave me predisone and said I could check out an Orthopedic. I did so. Orthopedic did lumbar mri (no contrast) and back x-ray. Ortho said spine looked great. MRI indicated a "very small annular tear at L-4 L-5, minor bulding, no stenosis. He said my knees were a little hyper reflexive. Said I could go to Neuro to get checked out or that it may just "go away' and not come back.
One night I woke up with lower abs "vibrating" a little creepy, but I didn't flip out.

Made appointment with Neuro. Before appointment (around new years this year 2009). Before appt. I started having these crazy muscle twitches, all over my body, head to toe (the type I guess they talk about with ALS). Felt like popcorn all over. Saw neuro, felt like he wasn't really listening. He said "Alcoholic - Magnesium or B12 deficiently). I have been sober and recovering for three years. Chuckled when I mentioned MS. Send me on my way to buy supplements. Within a short period of a week or so the twitching mellowed somewhat and I began to have pins and needls (mostly in legs), burning sensation in legs and arms like IcyHot. Hot water sensation running down by back and shoulders. Back of neck tingling, burning pains. I have had cognitive disfuctions I could not understand what people were saying, hard time finding words, balance issues (walk like a drunk). I mostly seem to fall or lean to the left. Floaters in my eyes. I have one spec in my left eye that is always there. Newer - I now see a shimmering around car lights at night. This affects both eyes - like halos but with prizims, big starbursts. Had a few days where I was so exhausted I just wanted to lay down and when I did here comes some restless lets and even my right arm. I then started having bilaterial numbness in the pinky and ring fingers on both hands. Bilaterial numbness in the 2 toes next to pinky toes on each foot. Stiffness in my hamstrings from time to time (the same area of the hamstrings that I had the crushing pain in a year before). Feels like I walk funny. Walking into door jams. Brain MRI showed non-specific lesions 2 very small and one larger. I am now seeing two Neuros, one is an MS specialist and both state that those lesions are not to worry about. Not MS like lesions. Expected some do to smoking and drinking history. MS specialist says "periprhial neuropathy". I thought that would make both feet numb (glove and stocking effect), not 2 bilaterial toes and fingers. He ordered cervical MRI (said lesions there would cause such symptoms). Cervical MRI was clean for lesions, but again as the first one on the hamstrings prior had minor buldging, no stenosis. He does not think MS. I am moving forward with LP because I am scared. Symptoms seem to be backing off. Depressed, afraid, bloodwork all came back normal. Was malnourished at the time I got sober, but have eaten well since. Can B12 Def. be missed in bloodwork? Mine was fine. They also did Lyme titer. Magnesium was fine. Anybody have similar?
Update - symptoms are all still here. The all over twitches seem to be coming back.
I am now having some trouble swallowing. Like the food slows as it is going down. I am also starting to get small "hiccups" when I am eating. I have more pins and needles now in my left foot. Vibrations in my legs. My cognitive seems to have improved, but the others seem to be hanging around.
My more recent blood work came back, vitamin D2 was negative 4 and D3 was low at 20? Doc said very low D. From what I understand, people with MS generally have a low D and perhaps should not take the extra D. I am a Floridian, born and raised. I am in the sun etc. I am or have been a bodybuilder and have been tan etc.
Where do we go from here? I took a temp leave from work because I feel like I can't keep up and want to try to get a Dx. I am trying to get into Shands (with the support of both family doctor and neuro) and they seem to be hard to get into. My insurance covers Shands. Does not cover Mayo fully (where I would prefer to go). What have you all done with these types of situations? Does anyone know how to get into these clinics faster? Would you go to Mayo even if it would cause you to have more debt? Does anyone here consider stem cell treatments in other countries if it turns up to be MS? I am also more fearful that it could be devics disease? Thanks for any input you can give. I want to go to the hospital this week just to see if they can find anything and push me over to Shands or Mayo.

[Kenny12345]

i am in florida too and i have been going through alot myself. back in oct. i was refered to the USF were they are doing a ms work up on me. on march 9th i went into a bad attack and i had no idea what was going on but this community has helped me alot and i think what i am experiencing is the ms hug along with other ms symptoms. I have another appointment with USF this week (havnt seen them since this all started. i redid the mri's and i am waiting to hear what USF doc has to say about it but my local nuero says they look clear. however the t-spine report which i got a copy of today says that there are "a few small chronic-appearing schmorl's nodes at the mid and lower thoratic spine." also disk protrution with thoradic cord impingment at T5-6 and T6-7. i have no clue what it all means though so who knows

[Kenny12345]

You might want to look into maybe going to the USF. they are very good and seem to know what they are doing. I have no complaints so far.

[Teri_M]

I know what you mean. My current neuro (MS specialist) does not think this is MS. Neither did my previous neuro. I have three lesions on my brain. One larger one in the cerbellum and two smaller ones in the back. Was my first MRI when I started getting the "all over body twitches" from there things seemed to go haywire. I'm an administrative assistant and my bosses were talking to me and I could not retain what it was they were saying. Do you have billaterial numbness (lets say just the same two toes on both feet for instance). Both back MRI's had "minor buldging" (one had a small annular tear?) and Neuro said not MS on the most recent because there were no lesions.
Floridian too? I think we get enough sun not to have vitamin D deficiencies. Have you had a lot of blood work? Right now my biggest concern is the thing with both eyes at night, like prizims around lights and the trouble swallowing and hiccuping when I eat. Did you have those? Thanks so much Kenny.

[Teri_M]

Oh, and I know what you mean about not understanding these reports. I have no clue. How long did it take you to get to USF. I am trying to go to Shands Gainsville and it seems like it takes awhile. I was thinking of going to the local hospital just because I feel so scared. So MS runs in your family?

[Kenny12345]

yes ms runs in my familyon my mothers side,but i just found out this morning that on my fathers side i have a cousin who was diagnosed with ms in jan. 09. this was a shock as i do not talk to my fathers side much and my cousin called out of the blue today. not even sure where he got my number.

[ginak]

Hello Teri,

I have been going through everything that you have since July of this year, which occurred after a bad viral infection. I had 2 mris in Sept of 08, both of brain, with and without contrast and both normal. I also had a mri of the cspine, normal. I then had an all over body scan-negative. I have had a ton of bloodwork, only to find out that I have Epstein Barr virus and low vitamin D. I went to 2 different neuros and one told me not MS and the other, who performed a spinal and EVP, told me about the connection of MS and Epstein Barr and Vitamin D. My spinal tap revealed high myelin sheath based protein and I was told that it was as a result of the virus. I was told to wait another year for mris(Sept 2009).

From there, I went to see 13 other specialists. I went to a rheumy and was quickly dismissed, even with the rashes that I can't seem to get rid of. The rashes are always on my neck. The rheumy even refused to see me again. I began to look for an LLMD because after looking back over my lab and spinal results, I noticed that I had a small amount of lyme present on the spinal tap and I also noticed that band #18 was positive for lyme. My neuro never mentioned a word of it.

I found a doctor who specializes in lyme. I ordered a test through Igenix, which came back for more positive bands, but still very inconclusive. The doctor ordered a CD57 test, which came back abnormally low. Usually, this test is indicative of chronic lyme. I am now just starting on 6 months worth of treatment for what my doctor has termed "chronic neuro-lyme". Lyme is basically a clinical dx. I can certainly relate to you in terms of what you are going through. I too have an appt with a MS specialist at Emory University, but it is not until May. My lyme dr told me that neuros are the first to easily dismiss lyme as a possibility.

Whether I truly have lyme disease....I don't know. However, I have nothing to lose by starting on treatment. Many autoimmune diseases can start as a result of bacterial or viral infections like mycoplasma, HHV-6, and Epstein Barr. I don't want this to develop into MS or anything else, but I am convinced that if I sit back and do nothing, this could very well be the case.

I still have the muscle twitches all over, tingling and random (migratory), occasional numbness, eye floaters in my left eye, loud ringing in my ears, migratory joint pain, internal tremors, and a host of other issues that have come along as a result of all of this. I know tested positive for Grave's antibodies and still a relatively low vitamin D even after being on treatment. I also experience shock like sensations throughout my entire body. The symptoms are getting better, but I take a ton of supplements everyday.

It may be worth you looking into lyme disease, especially with the array of symptoms that you are having. I have read that Post-Viral Syndromes can sometimes take up to 2 years of recovery time. Whatever this is, I hope we find the answers before this turns into something worse.

Take care and keep fighting.

[Teri_M]

Thank you so much for your response. They did a lyme titer on my bloodwork and said it was negative. I have the low vitamin D and was advised by my family doctor to start taking vitamin D. I live in Florida and we are the sunshine state. Low vitamin D I don't believe is too common down this way. Have you ever had the symptom where your heart sound was beating in your ears? The joint pain too, ouch!
My back MRI's show no lesions, but they show "minor buldging" in different areas. My brain MRI had those (3) non-specific lesions that two neurologists (one being an MS specialist) said were not MS. Are you taking the vitamin D supplements? I know I have been taking the good multi now, the B12, the Omega 3 and the vitamin D.
So your dx was Lyme? Did they find that easily or did you have to go through more testing? This stuff is so complicated. Thanks again,  Teri

[Teri_M]

Oh - and my knee reflexes are hyperactive.

[JJFL]

Hi Teri,

I am in Florida and have to agree with Kenny about USF "they are very good and seem to know what they are doing"   I have unfortunately seen too many Doc's who don't have a clue what they are doing.

I sent you a Message let me know if you got it.

Peace...

JJFL.

[ginak]

Teri,

Yes, I was on 50000 IUs of VItamin D for 3 months. Yes, I have regular tinnitus and pulsatile tinnitus as well. Its just like the heartbeat sound in my ear. I have regular tinnitus on the left side and heartbeat sound in right ear. I had to seek out a LLMD, who dx'd me with clinical lyme disease. It is not easy to find a doctor to treat lyme disease. I still take Vitamin D supplementation, but on a lot of other supplements as well. I will be happy to share this with you throuh IM if you desire. I am on a ton of stuff right now and in my opinion, I still have no definite dx. I will have to see how I do after being on antibiotics. I too have mild hyper reflexes in the knees. I take Fish Oil, Cod liver and B-12 as well. We have a lot of the same thing going on. Please let me know how things turn out for you. Has anyone ever mentioned Post Viral to you?

[ginak]

Lyme tests are very unreliable. The only one that can give you the most sensitive results is Igenix. They are expensive, but worth it to find out what is going on with you.

Take care,

Gina

[Teri_M]

I would love to talk with all of you guys about this. My family and friends are trying to understand, but they can't really. I know they are concerned. I'm very scared. I've always been so athletic and now I just want to know what is going on with me and if it can be treated. I am so glad you guys are here to talk to.
JJFL - where would I see the message you sent? I am new to this. Would it go to my email? I need a little coaching :o)
I'm trying to get into Shands, but that is seeming very difficult. I would like to go to Mayo but my insurance only covers a percentage there. I am thinking of just checking myself into the hospital locally where my neurologist practices to see if they will run a battery of tests. I'm on temp leave at work and need to return soon or get a dx. This is just something else. Thank you guys.

[ginak]

All of your private messages will be in your "Inbox" when you first log into Medhelp. You are able to respond privately to those individuals there.

[JJFL]

Hi Teri_M,

Thxs ginak for giving her a heads up on the messages.  Teri if you are already signed in then go to the top of this page, just above the "search Medhelp" box you will see Inbox | Logout click on the inbox and it will take you to the message.

JJFL.

[CathyDe]

I too, have been having all the same symptoms, seen multiple docs, all my labs are ok, but still have MS symptoms. I am so frustated.
Cathy

[Quixotic1]

First, Welcome to our little Bright Side of the Moon.  I'd like to weigh in on all of this.

I read through your posts.  I will have to say that my impression is not of MS.  And it certainly is not a 3 year delayed effect of alcoholism.  Many of your symptoms have appeared "all over" or in indentical places from side to side.  This is not how MS shows up.

Another clue are the all over little muscle twitches (harmless, but will drive you batty).  This response is seen more in "systemic" problems - that is problems that affect the body as a whole.  In MS the symptoms are from specific lesions that strike here and there in a asymmetric pattern.

I will have to say that my strongest feeling for a direction that you should explore is Lyme Disease.  I agree with Gina.  Lyme disease has a preliction for the nerves of the peripheral nervous system - especially the snesory nerves and can cause horrible paresthesias.  But, Lyme can also invade the central nervous system and cause many of the cognitive things you describe.  Lyme Disease can pretty much cause everything that MS can, but it often has a cluster of symptoms that is more characteristic of it than of MS.  I think you have many of those symptoms, enough at least to get further, better testing.

Most docs out there will run a quick Lyme screen, called an ELISA test, and call it good.  The problem is that the ELISA misses a huge number of people who have Lyme, so it makes a lousy screening test.  The next test is called the Western Blot, which actually looks for the DNA of the Lyme bug.  This should be run by a lab that is skilled at running and reporting the specific "bands."  Gina mentioned Igenex, which some feel is the only lab that can consistently give accurate results.  I feel the western blot should be run by at least two different labs with instructions to report out the prominence of the specific positive bands.

As for going to a big name medical center like Shands or the Mayo, we have mixed reviews of these places.  Mostly the review are negative , but we have some people who are truly well served by them.  It seems to me that some of these doctors have had the great name of the institutions "go to their head."  We see a lot of arrogance and really poor treatment of the patients.  

At this point, look into the docs that people here are recommending.  I would also talk in depth with people with Lyme disease.  We have some members here who originally thought they had MS, and have subsequently been diagnosed or have evidence that they have Lyme Disease.  Please talk to Ginak, Amyloo, Wonko, SOONERMOM, and Speechgeek.  They can help you sort out the Lyme info.  We have a Lyme Forum here:

http://www.medhelp.org/forums/show/148

Now, about the worry about Devic's Disease.  You have none of the required parts of Devic's disease.  You have no spinal cord lesions and you have not had optic neuritis.  Without those two, Devic's is out.  Now are your visual symptoms a sign of optic neuritis?  The halo's and floaters are not.  The starbursts - ??  Optic Neuritis can be seen in many diseases and on its own.  It definitely also occurs in Lyme Disease - which BTW is treatable and potentially quite curable.

You are welocme to stay here while you sort things out.  We have not requirement that people have MS.

Good luck, I hope you find good friends, good support and good information here.

Quix

[Teri_M]

Thank you so very much - as I can see you are a big part of this group and very helpful. Right now it is so scary because I don't know what I'm "fighting" I guess. My parents are not being very supportive right now. I am on leave from work and can return when I get a "clean" bill of health. I guess I want to know what this is and want to try and be able to work (hopefully without another bad episode). It sounded like my boss was talking in another language etc. UGH! They want to do EMG again (ALS scare to me). I didn't have lesions in my spine, but strange buldging in different areas. Minor, they said this should not cause my billateral numbness. Could bulging indicate a lesion trying to form or one that has healed up? I am hopeful for a Lyme dx I guess. How do you keep living and find happiness?

[Teri_M]

Oh and those non-specific lesions have to be something, you know? Radiologist said the old poss. migraines, small vessel diease or demyelnating process.

[Lulu54]

Hi Teri,
Quix did her usual excellent job with the quick assessment.... I just wanted to say that the usual misunderstanding of what a lesion is appears here ... for the neurological purposes, lesions are where scarring has taken place and damaged the myelin surrounding the nerves.  It is not a growth that will press on anything else.  I hope this helps.

My best,
Lulu