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Old 01-01-2011, 05:19 PM   #1
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Post New to this Message Board- Trying to find answers

Hi to all;

To try to make a long story short ,,I am 39 and have progressivly gotten worse this last year with chronic symptoms daily numbness(various)tingling,pins&needles,w eird sensations down pelvic down legs,nerve pains,burning in both feet (bottom,mostly left) weakness in arms & legs(more right)pelvic pain( right&left),sciatic pain,pelvic bone pain(right)balance off,change in near sightness,trouble walking legs feel heavy & weak, fatique,sensitivity to touch,light,heat,smells.

Tests abnormal
LOw Vitamin D (14) Low B-12 (350) High Folic acid
positive ASCA IgA (no Chrohn's)colitis &IBS
High Bun/Creatine
C-Reactive Protein-6 quant
Normal Brain MRI w.o contrast
EMG-unknown yet
Ureodynamics-unknown

Neuro put me on VIt D & B-12 and was ready to dismiss it to that-Not ready to dismiss-it has been depilatating! Thanks for any help!!

 
Old 01-01-2011, 06:45 PM   #2
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Re: New to this Message Board- Trying to find answers

HI there. Some of what you said are symptoms, may honestly be due to your changing age..the eye issues, specifically, are not MS related, but could very well be related to that "almost 40" thing. I know I went through it, and I was 38 when I was dx with MS....MS related eye issues, arent prescription related, but pain and optical neuritis related and its a very painful disorder, if you had this going on, you would know it.

All the pelvic pain you described, is definately not MS related. The numbness, tingling/burning you describe, could be one of 500 things, most of which are not serious...senistivity to light, smells, heat, touch, can be neurological, but HEAT and COLD sensitivity are the only real MS symtoms, and those are described quite differently then "sensitivity". For most of us, when we have heat sensitivity, we actually cannot function. We either shut down or get completely disoriented. ITs not a sensitivity problem, its a more serious effect.

The fact that you had a brain MRI and nothing showed up, is positive, but also may mean that nothing showed up THIS TIME. When being checked for MS, doctors do both a brain and Cspine MRI and usually repeat it every 6 months. Lesions, sometimes are missed the first time around, due to size. The fact that you didnt have a MRI of your Cspine, I wonder why not?

The vitamin deficiency would explain every single pain and symtom you described, if that is any help to you. Id definately be following the doctors advice for a few months to see if it changes things.

Why do YOU think you should be tested for MS? And since, in your own words, you have gotten progressively worse in the past 6 months, what are you doing about it? Have you seen a neurologist, or just a primary care doctor?
Just for your information, MS doesnt get progressively worse for 85% of people, it is a very slow moving disease. However, for 15% of people ,there are more progressive forms of the disease, and its possible for it to change that rapidly; however if you had that type of MS - its HIGHLY likely that you would have seen lesions in the brain MRI. I dont think you have to worry about it being a progressive form of MS......way too many of the more "typical" MS symtoms are missing from your list of complaints and 80% of what you listed, isnt a neurological symtom.

Honestly, you should be either consulting with a Neurologist who deals with general Neurology, or you should give whomever told you that you have a vitamin deficiency a fair shake, and see if taking the extra B and D make the difference for you. Im really not hearing MS screaming here...

But, its a new year, and you know your body better then anyone. Pursue this for all its worth and be your own advocate. If you truly feel that you arent getting the answers you need- keep pushing. I hope you feel better soon!
Nikki
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Last edited by MSNik; 01-01-2011 at 06:45 PM.

 
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Old 01-02-2011, 04:54 AM   #3
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Re: New to this Message Board- Trying to find answers

Hello pathtoanswers,

You had a brain MRI but not a Cervical spine MRI? With your symptoms I would suggest geting a MRI of the spine, your answers may be there. If you have MS the pelvic pain can certainly be related to this disease, I have had this fact confirmed by 2 Neurologists.

I would hope you have also consulted with a GYN?
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Old 01-02-2011, 07:30 AM   #4
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Re: New to this Message Board- Trying to find answers

Quote:
Originally Posted by MSNik View Post
HI there. Some of what you said are symptoms, may honestly be due to your changing age..the eye issues, specifically, are not MS related, but could very well be related to that "almost 40" thing. I know I went through it, and I was 38 when I was dx with MS....MS related eye issues, arent prescription related, but pain and optical neuritis related and its a very painful disorder, if you had this going on, you would know it.

All the pelvic pain you described, is definately not MS related. The numbness, tingling/burning you describe, could be one of 500 things, most of which are not serious...senistivity to light, smells, heat, touch, can be neurological, but HEAT and COLD sensitivity are the only real MS symtoms, and those are described quite differently then "sensitivity". For most of us, when we have heat sensitivity, we actually cannot function. We either shut down or get completely disoriented. ITs not a sensitivity problem, its a more serious effect.

The fact that you had a brain MRI and nothing showed up, is positive, but also may mean that nothing showed up THIS TIME. When being checked for MS, doctors do both a brain and Cspine MRI and usually repeat it every 6 months. Lesions, sometimes are missed the first time around, due to size. The fact that you didnt have a MRI of your Cspine, I wonder why not?

The vitamin deficiency would explain every single pain and symtom you described, if that is any help to you. Id definately be following the doctors advice for a few months to see if it changes things.

Why do YOU think you should be tested for MS? And since, in your own words, you have gotten progressively worse in the past 6 months, what are you doing about it? Have you seen a neurologist, or just a primary care doctor?
Just for your information, MS doesnt get progressively worse for 85% of people, it is a very slow moving disease. However, for 15% of people ,there are more progressive forms of the disease, and its possible for it to change that rapidly; however if you had that type of MS - its HIGHLY likely that you would have seen lesions in the brain MRI. I dont think you have to worry about it being a progressive form of MS......way too many of the more "typical" MS symtoms are missing from your list of complaints and 80% of what you listed, isnt a neurological symtom.

Honestly, you should be either consulting with a Neurologist who deals with general Neurology, or you should give whomever told you that you have a vitamin deficiency a fair shake, and see if taking the extra B and D make the difference for you. Im really not hearing MS screaming here...

But, its a new year, and you know your body better then anyone. Pursue this for all its worth and be your own advocate. If you truly feel that you arent getting the answers you need- keep pushing. I hope you feel better soon!
Nikki
Thanks for your response; I do want to say that I am just now within the last 2 months have seen a Neurologist. I was seeing a Rheumo, and was tested for all those typical rheumo diseases and they were neg. I had a mri of cervical spine which was ok 1yr ago w/o contrast. (due to neck pain before all these crazier symptoms happened) tested for thyroid, and diabetes neg. I was defiecient Vit D 1yr ago they did the 8wk thing then just went back to being defiecient. I wake up evrey morning feeling as though my feet were bound up and the burning pain let me tell ya.. Sciatic pain has been getting worse as of late. As far as the heat thing well my hand goes numb when in hot water. ANd in the summer when hot my energy is completley sucked out of me. I get sick feeling in hot areas..I have facial flushing at times. My legs feel like they could buckle at times, i walk as if im drunk banging into things. There hasn't been a day that i havent felt pain or something is "asleep" i get pin *****s and pain as if someone had a voodoo doll on me. My feet are either burning or numb, rocks in them, or my shoes feel as though they are filled with sand. I sometimes feel as if water is being poured down my butt down my legs. I am leaking urine and have no feelings down there (not to get too personal) my pelvic pain yes in some parts is due to pelvic adhesions, Yes seeing a Gyno going to have a hysterectomy, Prolapsed Uterus. I am so often fatiqued can hardly hold my plate and have to prop it up w pillow. No hairdryer, Going through clothes racks at stores proves to be tough. I know there is so many more symptoms , I really know it is either neurological or muscular. I'm tired of being pushed aside by docs and "piecemeiled off" I know my body and this is def not normal aging process. I appreciate your help i will continue to get answers for my families sake.

 
Old 01-02-2011, 07:49 AM   #5
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Re: New to this Message Board- Trying to find answers

To Snoppy: Hi there; Thanks for your response! I had a MRI Cervical i think it was 1 yr ago or maybe 1 1/2. It was clear that was when complaint of neck pain (flu like feeling) that was clear. I don't think it was a full scan though. More neck. I was diag w/Fibro from Rheumo but he tested for evreything & said that i should see a Neuro when things started really going down hill, I am seeing a Neuro who wants me to see a Neuromuscular specialist. I havent recieved my EMG(legs) yet but i know something showed on that. The tech kept saying you should of gotten a much better response etc, will find that result out this FRID from the Neuro office that performed it i might switch to them due to the closeness from where i live.I am currently getting scheduled for a hysterectomy and possible bladder operation(i go in this coming wk both to the Gyno & Ureo to find out) There isn't a day that goes by that i am not suffering with pain, uneasiness in walking, burning in feet, now starting in hands, sciatic pain starting up . Hip bone , pelvic pain almost like the burning in feet. The weakness in arms & legs is scary ..I am 39 and have to prop my plate when eating, cant hold a hairdryer,clothes racks in stores my arms fatique severly. This is scary,. I walk like a much older person. Symptoms are crazy . Numbness,fatique,urine leakage,pins needles,creepy crawlies,burning,cramping,twitching,head aches,feels like someone has a voodoo doll on ya and really hates ya. If this isn't MS it is def something going on and i question whether all this could be just vitamin d and B-12. Please read prior post response that i did. Thats another great thing memory & cognition, ps i also slur speech at times. Great huh?? Thanks for taking the time to listen to me rant.. It is appreciated.

Last edited by pathtoanswers; 01-02-2011 at 07:54 AM. Reason: added some things

 
Old 01-02-2011, 11:30 AM   #6
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Re: New to this Message Board- Trying to find answers

I would have to add agreement with the cervical spine MRI. In 2002 my MRI included the thoracic spine where active lesions were found. I go through severe pain in my lower back which radiates through my left hip and into my thigh. My only relief has been the heating pad. Since discovering the heating pad relief, I have been able to hold off 2-3 additional episodes. If I attack the pain early, it brings a much faster end to the cycle.

I am sensitive to light in my right eye only, some smells will bring nausea, heat zaps my strength and energy.....unfortunately what you are going through can be MS or one of 400 other diseases. A neurologist who deals with MS can help you sort things out and bring you towards a resolution. Even though you have been seeing the neurologist, is MS their specialty? If it is, you will have to maintain the patience of Job because there is not one single test for MS. Your doctor will need to eliminate all of the possibilities.

Your MRI, if you have one which includes brain and cervical spine, may appear normal if you have MS and it is still early. This is one of the delays which muck the diagnosis. Be strong and patient and you will get through this conundrum.
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Old 01-02-2011, 05:24 PM   #7
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Re: New to this Message Board- Trying to find answers

To Msjayhawk;
Thanks for the reply i know i am still early in the process, but it can be so stressful. I def plan to push for more testing to be done. Had EMG of the legs (unknown results) feel should do arms too. Is there other tests like that? Yes def MRI of thorac and pelvic region should be done. I'm going to keep pushing for answers..

Thanks so much!!

 
Old 01-02-2011, 05:36 PM   #8
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Re: New to this Message Board- Trying to find answers

Quote:
Originally Posted by pathtoanswers View Post
To Msjayhawk;
Thanks for the reply i know i am still early in the process, but it can be so stressful. I def plan to push for more testing to be done. Had EMG of the legs (unknown results) feel should do arms too. Is there other tests like that? Yes def MRI of thorac and pelvic region should be done. I'm going to keep pushing for answers..

Thanks so much!!
The thoracic spine is rarer for MS for lesions. For MS you can concentrate on the brain and cervical spine. The pelvic region for MS would not likely do anything.

The Evoked Potential Tests are also used. For me, the VEP (visual evoked potential) has remained a constant positive test result. Your doctor might also run some nerve conductivity testing as well.

If you read up on the revised McDonald Criteria, you will be in good shape.
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Old 01-02-2011, 07:54 PM   #9
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Re: New to this Message Board- Trying to find answers

Quote:
Originally Posted by pathtoanswers View Post
Yes def MRI of thorac and pelvic region should be done.
The MRI for the pelvic area would not give any indication of MS or not. MRI of the Plexis shows blood flow and something else I can't remember at the moment. When I had that MRI we were looking for a cause of pelvic pain.

With the help of 2 different Neurologists it was determined it was more likely than not the pelvic pain was due to MS. Both Neurologists had seen this in other patients as well. This was after undergoing numerous tests which all came up normal.

Are you aware there is the specialty of a GYN and Urologist...Urogyn. This might be an option for you with both urinary and gyn problems.

Many of your symptoms sound neurological. Hopefully your doctors can figure out what is causing your symptoms...MS or something else.
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Old 01-03-2011, 05:58 AM   #10
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Re: New to this Message Board- Trying to find answers

To Snoopy
Thanks so much! I appreciate your time & advice.. I have an apt with the UReo tmrw,,The ureodynamics was to see if i need the bladder surgery along w/the hysterectomy.But being a typical mom (2 teenagers, attending college at 39) can't seem to make the time to schedule it,.So def next break need to get it done. Anyways I also have GI probs. My test ASCA IgA was positive and had colonoscopy no chrohns, but IBS and undetermined Colitis (set aside since then w/evreything else going on) I also had Hepatitus about 1yr ago due to having severe jaw pain & taking too much acetementhan than went back to normal after wks. It seemed like evreything is hitting at once. I do remember when in HS i fell pinched a nerve in leg and couldn't use leg just dragged for about 4-5 months then had atrophy.Also fell again in HS and injured elbow. I do know i have had alot of infections for the last 18yrs since having my first son , and getting an infection in the hospital and downhill since then, But these symptoms as of late with the nerves has really kicked in high gear these last 2yrs... I'm not sure what is happening but it seems as if my body is fighting me. IF not MS i know def something. I need to get evreything on paper better and figure timing. I get messed up on how much time has passed. That's another great symptom inabillity to concentrate & memory. I called my sis twice and told her the same thing. I think the main prob is going from doc to doc losing insurance and getting it back.. Not having the docs compare notes. I switched prim doc and they referred me to a Neuro so this is new with that. So confusing!! SOrry so long thanks for taking the time to listen!!

 
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