Please help me with my symptoms

[nenufar]

Two years ago (I was 28 ), I "think" I hurt my back lifting weights and got a sharp pain in my hand, followed by numbness of two smaller digits and then tingling in hand and arm. Tingling lasted about 4 months, but went away. Soon after I started having severe earaches and went to the doctors many times thinking I had an ear infection. They saw nothing and said it could be TMJ.

A few months later I woke up with permanent ringing in my ears and during this time had some loss of memory and couldn't find the words I wanted to say. I was really anxious and depressed about my life at this time, so I thought it was stress. I started having TMJ treatments, but never really improved. Doctor refered me to a back specialist who diagnosed me with possible Thoracic Outlet Syndrome or cervical radiculopathy. I did physical therapy for about 2 months, but soon started having tons of dizziness, severe neck pain, pain in legs, spasms in shoulders, twitches all over the body.

I was freaked out and went to the ER. I got an MRI of my spine which came back normal (no pinched nerve). During this time I started feeling "buzzing" sensations in my leg and feet. Doctors thought it was peripheral neuropathy and were not too concerned about MS. I had an EMG of my arm which came back normal. A month later I started having vertigo and went to the ER again and was told it was Benign Positional Vertigo. Now I will see a neurologist on Feb 5th.

I have been under a huge amount of stress for the past 2 years, so I definitely know that stress made everything worse for me, but am not sure if it is causing all this. Also, I have hypermobility in my joints and tons of crepitus, I mean every part of my body makes crackling noises when I move.

All blood word and basic brain signals are normal. My primary doctor didn't think it was MS because I've been having constant symptoms, and she said MS is usually more spread out. Plus I never really felt weakness, though my walk feels unstable.

I know I am not a doctor, but from my reseach everything points to MS. Even the fact that my calves are so toned (apparently it's due to spams). I just don't think it's possible to have 50 different benign issues at the same time(tinnitus, vertigo, tingling, twitches, spasms, etc) and not MS. I really bothers me that doctors have been dismissing most of my symptoms for stress, but I don't think it's possible for stress to cause all this. I think it definetly made everything worse, but I've been feeling so ill for so long now.

Thank you so much for listening. I know MS differs greatly from person to person, but maybe you have some insight on this.

Edited to say that I've also had terrible IBS since everything started. It alternates between horrible bloating and diarrhea. Ginger tea helps a lot. I do have real TMJ problems too (disaligned bite, hypermobility in jaw).

[scoobyjude]

Nenufar, while it's true that alot of the symptoms you've experienced could point to MS (my gp actually dxed me with cervical radiculopathy too), best not to diagnose yourself too soon. Those symptoms can be attributed to other things too. Keep a record of all the symptoms you experience and share them with you neuro. Hopefully the neuro won't just dismiss them as stress and will actually put you through some more tests to rule things out. Hang in there, stress does make things worse. Good luck.

[beatms]

I eliminated my post

[nenufar]

Thank you scoobyjude for your encouragement. I was just wondering if my symptoms sound familiar to anyone. I know they're all over the place and pretty constant and that is why doctors have been puzzled so far.

[nenufar]

Your IBS occuring when your other things did is significant. I would focus on your gut first, as it may actually be the underlying cause.

-Dave

Really?! All my blood tests came out okay. What do you think may be causing it? A problem in the intestines? I will mention this to my doctor. It seriously started happening along with everything else and I never had stomach/IBS problems before.

[lyndacarol]

nenufar--I cringed when I read your posting that mentioned Thoracic Outlet Syndrome! That was diagnosed for me too. In fact, I went to the Mayo Clinic in Minnesota for a second opinion when my local doctor was scheduling surgery to remove my first rib. Mayo doctors assured me it was not Thoracic Outlet Syndrome; after two weeks of testing they thought it was a herniated disk and did a cervical laminectomy.

I now know that they were wrong. That surgery did nothing to help me. Six months later, with even more symptoms and a third MRI (which showed lesions this time), I was diagnosed with MS.

My advice: take a deep breath and try to wait for things to shake out to a definite diagnosis. Symptoms can be confusing at first, don't be rushed into a drastic course of action. Have a THOROUGH examination and every kind of blood test possible (including a fasting serum insulin test--you see, I believe that hyperinsulinemia is a basic factor in MS)--let there be an evaluation of just where you stand at present!

Follow scoobyjude's excellent advice: start keeping a record of all your symptoms. Ask for and keep copies of your test results.

With her, I also say:

Hang in there, stress does make things worse. Good luck.

[LisaBee]

Nenufar,

You mentioned having gut problems. Have you been tested for celiac disease? This is actually not as rare as some might think - current estimates are about one percent of the population. Celiac disease is a abnormal immune reaction to a protein called gluten in wheat, rye, and barley. It causes damage to the small intestine, digestive problems, and malabsorption of nutrients. It is also associated with neurological effects.

Below is an interesting abstract of a review article mentioning neurological effects and arthritis seen in celiac patients.

I have no idea if this is your problem, but you might bring it up with your doctors if you have not been tested for it already. There are blood tests for this. It is best to be tested at a time you are eating gluten-containing grains.

I have been diagnosed with MS based on MRI. I have not been tested for celiac disease. I put myself on a gluten free diet in Sept 04 following a diagnosis in July 04, and digestive problems I had been having went totally away within a month so I stuck with it and have had no digestive problems to speak of since. My night vision had been bad for years, it gradually improved. I have not had an MS relapse since although I have odd low grade neuro symptoms, like twitches and vague tingles. I am not feeling totally perfect. But I feel much much better.

If your doctors are not responsive to a celiac disease test and you are still in limbo, you can try a gluten free diet yourself and see if it will help your digestion. There are plenty of websites on gluten free diets. Give it a couple of weeks or a month to see if you get relief. Another thing to try in the diet department is to eliminate dairy products for a few days, like a week or so, and see what happens. A lot of adults are lactose intolerant and can't digest milk well.

Good luck! Hope this helps. Check out the abstract below....

^^^^^^^^^^

1: Curr Gastroenterol Rep. 2006 Oct;8(5):383-9. Links
Extraintestinal manifestations of celiac disease.

Hernandez L,
Green PH.
Columbia University College of Physicians and Surgeons, Harkness Pavillion, 180 Fort Washington Avenue, Suite 936, New York, NY 10032, USA.
Celiac disease is an autoimmune disorder that occurs in genetically predisposed individuals as the result of an immune response to gluten. It is present in approximately 1% of the population. Diarrhea has become a less common mode of presentation (<50% of cases) than it once was. Other presentations include iron-deficiency anemia, osteoporosis, dermatitis herpetiforme, and neurologic disorders, mainly peripheral neuropathy and ataxia. Arthritis is commonly found in patients with celiac disease when systematically sought. Overall, autoimmune diseases occur more frequently (three to ten times more) in those with celiac disease than in the general population. A gluten-free diet is the standard of treatment, although its effect on some of the extraintestinal manifestations remains to be determined.
PMID: 16968605 [PubMed - indexed for MEDLINE]


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[nenufar]

lyndacarol,

Thanks for your reply. You mentioned that you had MRIs that showed no lesions -- is it possible to have MS and no lessions? I'm so confused about this. I had an MRI of my spine and doctors didn't see any lesions, hence they weren't concerned. I'm sure the neurologist will order a brain scan though.

My question is, if one is having symptoms in legs and arms (tingling, buzzing, pain, etc), wouldn't the lesions show on the spine (not the brain)? From my understanding, lesions on the brain would cause other type of symptoms, because the nerves are connected to different parts of the body


LisaBee,

Thanks for pointing out celiac disease. I will certainly mention this to the doctor, thought they did blood tests and B12 was okay plus no anemia. I'm thinking all the crackling in my body is very strange, since it's not connected to MS at all. The only thing I found online that causes crepitus is arthritis.

By the way, I've cut dairy out of my system right about the same type my IBS symptoms started. I assumed it was related too! I am cutting all wheat now and see what happens.

[jimmylegs]

hey there NNF, i agree it's time to track things that happen in a planner of some sort so that the docs get a better idea of your day to day experiences when you go to see them. that is too many things at once not to be concerned about, i surely agree.

be careful when ppl tell you your b12 is "okay". may i ask what it actually was?

i have brain and spine lesions and all my issues that i know about are from the spine lesions. there are indeed some ppl on here with no lesions but ms diagnoses.

what is your diet like? if you cut dairy you may have to consider supplementing some replacement nutrients there...

the crackling/arthritic issue. do you take any supplements? the weight training thing made me think you might...

that is sad to hear everyone commiserating about preliminary diagnoses. if i have to be glad about anything, i guess it's that i knew what they thought in a week from my onset attack!

[Loobie]

Hello Nenufar,

You have quite the laundry list of stuff going on! There are a lot of symptoms you describe that could be MS; and lesions or no, you may or may not have it. I had only spine lesions to start and was dx'd with neuro myelitis optica. Then the brain ones appeared. Now it's back to MS.

I agree with Lynda that you should take a step back and breathe. I know it's stressful, but it sounds like you have a lot of stress anyway. I will tell you that you need to work on that. If you do have MS, the stress will make it feel much worse, and if you don't, well if you get rid of that you will have it licked.

The IBS and a lot of the other stuff could be stress, but (even though I hate to say it) time is the real answer if you want a solid MS diagnosis with out lesions. Have you had a spinal tap? That's what they first dx'd me with along with optic neuritis. Figuring out the stress thing is going to be a challenge, but if you want it bad enough, you will make the necessary life changes to eliminate the heavy stress it sounds like you've been under.

I've had sore joints that I think have been attributable to MS, but not the popping of the joints. That one I've never heard before in connection with MS. Good luck and God willing you will have your answer soon.

Lew

[Wonderfulworld]

Hi Nenufar
well youve a lot of stuff going on...........remember it might not all be related. Lisabee's comment about coeliac disease is very good - I have MS and coeliac disease (but that's not to say you have either, or both!)

A word of warning. If you are going to get tested for coeliac disease, before you start cutting gluten/wheat out of your diet, eat <b>normally</b>. Then go to your doc and ask for the blood test for coeliac diseaase. You NEED to be eating normally to get an accurate result. If you cut out gluten and then get tested you could get a false negative.
Hope you get some answers soon, the anxiety of not knowing is really horrible and I'd say the majority of us have been through that at some stage.
Good luck[/b]

[Chris55]

Nenufar--it took almost 3 years for my daughter to be diagnosed. At first, she was SO relieved to finally have a name for it! Then reality set in and she didn't want that diagnosis! Then she adjusted, got on medication and pretty much stabilized. Her case is very mild in spite of her many varied symptoms.

My point: don't be too anxious to "push" for a diagnosis right now. And yes, take a DEEP breath. Doctors do not want to diagnose MS unless they feel certain that is what you have.

I would have all the tests they recommend and would definitely get a second opinion. Do your symptoms sound "MS typical" to me? No, they really don't. But I am not a doctor.

I wish you the best of luck on this stressful journey. We are ALL here for you each step of the way!

[nenufar]

be careful when ppl tell you your b12 is "okay". may i ask what it actually was?

what is your diet like? if you cut dairy you may have to consider supplementing some replacement nutrients there...

the crackling/arthritic issue. do you take any supplements? the weight training thing made me think you might...

that is sad to hear everyone commiserating about preliminary diagnoses.

Hi!

They just told me my b12 levels were normal.

My diet is pretty good, mostly fruits, veggies and lean protein. I do take calcium + magnesium and a multivitamin in addition to Omega 3s.

The crepitus just showed up at the same time as everything. I never had it before. I'm a pretty weak person to begin with, but never had any joint/bones problems. Doctors think this is a minor detail, but for me it's a huge deal, since my entire body makes crackling noises and I always think I broke a bone!

I didn't "diagnose myself"; 3 doctors have asked me if MS was in my family, but then they said "I don't think it's MS because your symptoms are so close together and you're missing the weakness." However, I know that MS can be so tricky and affects everyone differently, thus my concern.

Thanks for your comments.

[jimmylegs]

hi there, sounds like your diet is great. it might be in your best interests to know your actual b12 level, and i'm not sure about the crackling, but since you're taking magnesium and calcium... does that include D3 for absorption? (i imagine it would)... if not, getting more D than from the multi might be useful. good for the bones and preventing a bunch of other conditions also.

[lyndacarol]

nenufar--There have been postings here and personal accounts (as well as mine) that have shown NO connection between lesions and symptoms. Some people have severe disabilities and no lesions; others have no symptoms, but upon death and autopsy, are found to have lots of lesions.

Altho doctors often diagnose MS based on finding lesions on MRI, I think many doubt a link of one to the other.

With my belief in hyperinsulinemia, I think many of the peripheral (feet, legs, hands, and arms) sensations (paresthesia--tingling, "pins-and-needles", buzzing, etc.) can actually be caused by vasculitis or inflammation in the blood vessels due to excess insulin surging through the bloodstream and damaging the vessels. Some researchers at Louisiana State University have even proposed that MS is a vascular disease (not autoimmune or even neurological in the beginning).

As for test results, I still encourage you to ask for a copy of each test's results. The doctor's answer of "normal" is too broad and ambiguous; it is better to keep the actual numbers.