All Advice Appreciated

[tazla84]

10 years ago, I started with symptoms of vertigo, rapid eye movement, severe fatigue, tremors, terrible stiffness and numbness.  OK, I felt like I was crazy especially since it would come and go.  Don't complain, just be grateful you have a job, healthy family and home to take care of.  I kept going, but randomly mentioned it at my yearly gynocology appts. Eventually it got bad enough to interfere with daily activity. Still thinking "are you just whining", I seen a GP and asked about the symptoms.  Eat better, excercise, what about your thyroid, what are your vitamin D levels?  I was put on some pain meds (they make me sick and don't help) and every anti-depressant on the market.  The anti-depressants made me euphoric for 2 weeks then I would start itching and become so anxious I thought I would crawl out of my skin.  This was awful.  When I developed endometriosis and bladder problems, my gyno referred me to an osteopathic manipulator for the stiffness and numbness in my leg.  This doctor listened to me and continued to work with me. I showed up to her office with vaginal bleeding a year after a hysterectomy complaining that "I did not feel good AGAIN".  This was a pretty severe bladder infection.  Before the Hx, I had a burst ovarian cyst and complained that I was stiffer than normal.  I don't think some doctors listen when I say I am in pain and I am not the type to push.  I try to just go on, but this has become mentally exhausting.  The wonderful Osteo Manipulator finally asked me if I would be willing to try acupuncture.  This helped soo much, but was temporary.  If I go every week, my energy builds and the stiffness goes away.  That is when I realized I am not imagining this.  As soon as I quit going, I dive back into the depths.  She is the one who sent me for an MRI. "Multiple abnormal foci of increased sensitivity...round and oval...likely demyliniating disease".  Then to the neurologist, who ordered another MRI, VEP and Lumbar in addition to blood tests for Lyme, Celiac, etc....  The neurologist said the other tests were normal. Not MS, but not anything else either.  OK, now back to crazy again. Searching on the internet and analyzing and over analyzing every ache, pain and itch.  Sorry to go on. I hope there is someone this sounds familiar to. Please tell me do I wait for next year the repeat MRI the neuro ordered? Do I see someone else? I will value all opinions, thoughts and recommendations.  I am working with too many docs. I would like to hear from real experience. Thanks.

[tazla84]

Thank you both very much.  

FaithHGL, I am seriously considering getting a second opinion.  I feel like I am in the process of gathering this information.  I am getting the Hormone Panel, the MRI results, the other tests in addition to an eye exam and regular follow ups with my GP and acupuncturist.  My eye exam has already come back with some loss of peripheral vision although I have had no complete blindness.  I guess my instincts are now to get my ducks in a row do my research and present the issues more clearly to another Neurologist.  I thank all of you for confirming my suspicion and encouraging me to be more agressive about this.  I just hate to be a "whiner".  

Nikodicreta, I have become a much more open minded person about the importance of seeing my health from all aspects. Diet, nutrition, exercise, hydration, and mental health.  I will definitely look into the websites you suggested. The nutritionist I am seeing has mentioned the possibility of Adrenal Fatigue, but I haven't been very lucky in finding natural ways to work on this.  She also mentioned Leaky Gut Syndrom and changed my diet dramatically based on that.  I am seeing a difference in my digestive health or at least I am happier with it.  I also am very aware of the benefits when I go off the track.  I am more than happy to get back to the recommended diet.  

Thanks again to everyone for all the great advice.  I will keep you updated when I have more information.

Best,

Tazla

[TheLightSeeker]

Oh my dear, I do feel for you.
Please bear with me, as this process is a bit complex and it may take some time.
My intuition is pointing towards three significant areas :

1. Chronic physical and emotional stress.
2. Gut Dysbiosis
3. Adrenal Fatigue.

   The feeling I get is that, those  3 being interconnected strongly, hold  part of the key to your healing.
  And I also get the feeling that there's an overarching spiritual-emotional structure that is holding the balance of that key.

Somewhere in your past, a very significant event has taken place.
Should you be able to recall such an event, please let me know.
Often, for our own protection, very traumatic events,
are filed deep in  repressed memory files.
My suggestion , should this be the case, where you cannot recall anything ,
is that before you go to sleep, just ask to receive an answer to this. And leave it alone.
Don't "try" to remember and don't think about it. Repeat your request a few times, always before going to sleep.

   Everything happens for a reason, and as cliche as it sounds, it is a fundamental rule in the Universe.  Some people may find these concepts "off the wall" or too "New Age"
as the human mind cannot fully explain.
You don't need to believe in anything I mention here ( however , I gathered that you  have an open mind ) .  

  You may want to suggest to your Nutritionist that your body may need G.I. and digestive support (1)  along with adrenal support (2).
(1) A 3 month prebiotic and probiotic  therapeutic regiment  would be advisable ,followed by the maintenance course
They should be professional quality -not from a drug store- the ones that require refrigeration. 50 Billion + active  bacteria in a multi strain is good.
A great place for researching gut dysbiosis and GAPS(Gut and Psychology Syndrome) is:  keeperofthehouse.org  Probably very pertinent to your issues.
Stephanie Langford is the lady that put this site together. She did a very nice job.
It would take me too long to attempt to explain this further and make the connections for  your case. However, I'm familiar with this process, so should you have questions please just ask.
(2) Adrenal support. This is another delicate area and your Nutritionist may need to communicate with your doctor or Endocrinologist?- for this.
There's a lot of investigative work needed before any support plan can be implemented.
Dr. Lam"s website has a descent tutorial -drlam.com- just go to the adrenal fatigue center.

Finally, for now, checkout Energy Spiritual-Psychotherapists in Ohio.
( By the way there is a workshop coming up Feb 26 and 27,
at the "Angel House Centre" in Strongsville OH - is it far from you?-. Two days of Self-Healing and Energy Therapy. This is usually life transforming. I can attest to that!)
  
People in various states of health, have commented time and time again, that this type of therapy and healing has been by far the best decision in their lives , in regards to their health and wellness.
Again you can ask me any questions about it, as this is my main modality.
  
I hope I didn't overwhelm you with all this. The Energy just flows and I tend to go with it!

  Blessings,
Nikodicreta

  

  

  



  

[faithhopegreatestlove]

Hi Tazla,

I'm in agreement with the other responders to your posts -- most of us have had many years of dealing with getting brushed off, despite our subjective reports and objective test results. Let me just say that it is okay to practice patience, but also okay to be assertive and ask for what you need. The assertiveness is sometimes harder for us as women and as moms -- we are just so used to taking care of everyone else first, pushing aside our own pain, ignoring symptoms.

If I can encourage you in any way its this: write out a timeline of your symptoms in a concise one page synopsis. Get your health records, including your mri findings, READ THEM for yourself, do your homework so you can understand what you are reading, and find another neuro that can evaluate your condition. There's nothing wrong with getting a second opinion. (Though it can make you feel like you are cheating on your doctor. LOL!)

Best of everything to you and welcome to the limboland community. I hope you'll hang around awhile.

--faithHGL  

[tazla84]

First, I have not looked into these methods other than to work with the Osteopathic Manipulator who has been treating me for approx 2 yrs.  She has been working with the acupuncture for a little over a year. Prior to that I was taking ibuprofen for the stiffness and pain on a daily basis. Other pain meds made me sick and did not help.  Since the acupuncture I feel like my body has been released, but I need to go weekly or I loose the energy and stiffen up quickly.  I still have the tremors, rapid eye movement, bladder and bowel symptom, etc, but life is still more managable with a little energy and without the overwhelming pain and stiffness.  You are the first person (including all the doctors I have seen) who has actually asked me about what happened before these symptoms started.  Thank you.  It was 13 yrs ago now that I was pregnant with my second child.  Through that pregancy, I was working a very stressful job. I look back now and realize I did not do well with this.  I was exhausted from the very beginning.  I remember coming home from work and sitting down with my coat still in hand and falling asleep.  I would rest for a half an hour or so then get up cook dinner and go to bed.  I would fall asleep quickly then wake up in 2 - 3 hrs only to not sleep the rest of the night.  The entire pregnancy was like this.  At 6 months, I went to the hospital with contractions.  They said I was dehydrated and needed rest. After giving me fluids, they sent me home.  I never regained my energy after that pregnancy and actually 3 months later had my first experience with my leg going to sleep.   One symptom after another has crept into my life since then.  I am currently working with a GP who actually understands, believes in and uses the acupuncture as a tool.  She knows how I feel about the meds (pain meds and anti-depressants). I don't have an aversion to them, they just haven't helped.  I am seeing a Nutritionist who is evaluating my supplement needs and I am awaiting results of a Complete Hormone Panel to identify if there is an imbalance there. 10 years is a long time to deal with this. I have to take some responsibility in that I would mention my symptoms, but I would not push the doctors to deal with me.  It was seeing the Osteopathic Manipulator on a weekly basis and her treating me and seeing the frequency of my symptoms and what helped and didn't help that made her send me for my first MRI.  She was not surprised that they found the lesions. I think she is surprised that the Neurologist has just decided to wait another year.  I too am a grateful person and understand the power of seeing the glass half full.  It now seems like it is time to deal with my health so I can enjoy my future and not be a burden to my family.  I would appreciate any advice you have on areas of focus.

Thank you and best wishes to you and your family.

Tazla

[TheLightSeeker]

Hi. I'm new to this group. I preach and practice holistic and natural ways.
Have you looked into  various Energy Medicine Practices, besides acupuncture?
Also what happened before the start of all your "crazy" symptoms 10 years ago?
You  may be  looking for answers at the wrong places.
10 years is a long time to suffer like that.  

  Myself, I'm kinda medi-phobic or pharma-phobic.  Actually my life almost got messed up
  dealing with the "dysfunctional" medical model of ours... Looong story!
  So I decided to take health matters into my own hands. I studied Holistic Health and       Energy Medicine and got hooked for life!
I feel like an Alternative Health  knowledge junkie.
The benefit is that, not only do I enjoy the best health ever in my life presently, but help others improve their health and turn their lives  around.

So for what it's worth, please post again with some detail, in regards to the second question. I'm extremely resourceful and understanding at the same time.

My entire family has battled serious issues over the years. Somehow the Universe provided me with resilience, strength and understanding. And this made a significant  difference in our lives. I am so grateful.

Blessings to you and your family
Nikodicreta



  

[tazla84]

Thank you so much for you recommendations. My GP has mentioned the Cleveland Clinic as a possibility.  I agree that I my stiffness and pain are at a level almost everyday that I would benefit from some kind of medication. I am being helped some what from the acupuncture if I go every week.  The first MRI was of my brain and showed the Multiple round and oval foci... throughout my parietal lobes.  The second MRI was of my cervical and thoracic spine with contrast. It showed a few very small lesions. The Lumbar Puncture and Evoked Potential Tests came back "within normal levels".   The Neuro I went to see is known to care for MS patients so maybe I should just relax.  I am just having symptoms daily and I see him for ten minutes and he wants me to relay everything that I have been experiencing for 10 plus years.  Then not give me anything like a diagnosis. I really appreciate you both telling me I deserve more of a response than come back in a year for another MRI.  I will be coming back to this sight and keep updating.  I appreciate all the support and to sometimes just vent.

Best,

Tazla

[illinwithoutacause]

dear tazla84,

slightlybroken seemed to cover all the bases very nicely.  i second all of her suggestions, especially the one about getting a second opinion with an MS specialist.  did the 2nd MRI the neuro ordered have the same findings as the first one?  if so, it seems a neuro specializing in demyelinating diseases, e.g., MS, should take a look at you and your films.  do you happen to be anywhere near the Cleveland Clinic?  if so, maybe it's time to give them a call.

i am so sorry you are suffering and dealing with all of this without any answers.  you are in good company here in this forum, and please keep us posted.

blessings to you,
binx

[slightlybroken]

Hi & Welcome to Limboland!

I would recommend getting a second opinion. You really didn't get much from your first opinion..you know. If it's not MS..THEN WHAT?? He/She needed to give you a diagnosis of something. It's better sometimes to get a fresh pair of eyes to look at the situation.

Some doctors will repeat the MRI 3 months after the first one or 6 months..to see if there is changes. Some will wait for a year. It all depends on the doctor. Did you get an MRI of the c-spine & t-spine? This should have been looked at for the full workup for MS and the MRIs should include contrast.

I would find a good neurologist for your issues, even a MS specialist. MS can be very hard to diagnose and it has many disease that mimic it that has to be eliminated before a diagnosis can be made.

Are you on any meds for your symptoms? Just because you have no diagnosis doesn't mean you have to suffer. I have spasticity..which is stiffness in the muscles. It's almost like my muscles are in a flexed state, even when relaxed..Does that sound familiar? If so, you might need a muscle relaxer.( Zanaflex or Baclofen).

Take Care