terrified. I need some advice. Pls help me

[Deniseannette]

Thanks for taking the time to read my post. Im very scared and alone. I would love to get your opinions on this. I make it in chronological order.

Late March:
- Pain in ankles on waking ( overlooked, I am overweight)
- Off and on vertigo
- Smell strange odors, others couldn't smell

Early April:
- Weird sensation in both legs
- Tingling, kind of numb like feeling in legs
- Stomach pains
- Weight loss
- Constipation
- Sharp pain in buttock
- Vertigo continues

Mid April:
- Came down with virus
- No appetite
- Severe abdominal pain
- GERD - started taking nexium'/ Zantex (little relief)
- Headaches
- Legs shaking/quivering
- Ultasound (normal severely constipated)
- Diagnosis- severe pain due to constipation. Prescribed meds--felt better for 24 hrs
- Also, very dehydrated.
- twitching in legs and shoulders blades only. (thought it was due to virus)
- Internal tremors upon waking
- Wake up out of breath


End of April:
-Cramping of right calf in morning
- Wake up out of breath
-Twitching of legs, shoulder blades continue
-Legs shaking constantly (especially upon standing)
- Pressure headaches
- Daytime sleepiness
- Chest xray (lungs slightly compressed due to "weight")
- Lung capacity test (okay..doc said due to weight)

Early/mid May:
-Internal tremors continue
-Pressure of head, nose, sinus area
-Twitching continued (no weakness yet however)
-Back pain
- Felt a loss of control of right leg for awile
- Xray showed C3-C5 forminal stenosis
- L5-S1 Degenerative Disc Disease.
- Electrical zaps in head- felt like the left side of head was splitting for the right side.
- Involuntary musle jerking ( right leg)
- Went to Sunnybrook ER for second opinion (according to them No forminal stenosis of cervical spine. Early sign of Disc degeneration in lumbar spine. I'm pretty sure is due to weight.
- Electric shock type shock through right leg. Had to dragged my leg around 1 night. That went away. Happened twice.
- Pulsating type feeling up right leg to knee.


Late May:
-Frequent headaches( from moderate to severe to cluster to complex) you name it, I had it.
-Internal tremors continue
- Feeling like a can't breath.
- Sometimes I can't breath laying on back or side.
- Stiffness in right calf
- CT scan of brain normal
- Twitching now spreads to stomach and back
- numbness of left arm (went away)
-Off balanced
- Fingers in left hand shaking
-Heart palpatations


Early June:
-Muscle aching
-Feeling unable to breathe
-Twitching continues (of course)
- Reoccuing palpable lymph node on back of neck
- Spasms and charlie horses on right leg in the morning
- Small twitching I can't feel seen on right calf
- Tingling of face (mainly on left side)
- Feeling off balanced
- numbness of left arm (went away)
- Dizziness

Mid June to Now:
- EMG said to be normal (have not recieved report)
- Twitching now on almost every part of body (arms, legs, calf, shoulder blades, tongue, face, kneecaps, lips,butt..even up my nose.
- Cramp of hands
- Pain in left hand
- Slighty atrophy in hand (could be in my head though)
- Dizzness. especially when sitting down
- Tingling of scalp and face. (very debiliating and disconcerting)
- Loss of appetite.
- Dirreaha (you really didn't need to know that I'm sorry) probably due to Natural Calm and that awesome time of the month!
- Swollen lymph node right side of neck.
- Fingers in left hand continue to shake.
- Feeling a loss of control in entire left arm
- slight pain in entire left arm.


I'm scared I might have some neurological problems. It started with a virus and progressed from there. I've been on boards for both ALS, MS and Lymes. Most saying i don't have it. I'm 22 years old and I'm scared I might die. I can't live like this anymore. I've been to at least 10 doctors. None of have helped me

[Deniseannette]

Got tested with ELISE . Came back negative. Trying to get cured of H Pylori before I look back into Lyme.  Thanks again.

[ewford]

If you had a local clinic do a Lyme test, I would discount that result.  Standard labs will not pick up infectious Mycoplasmas and Lymes (there are so many strains of Borrelia, and your titre for Lymes will be insignificant).   All my symptoms were the same, even test results same.  EVEN white tongue (yeast infection).  Get tested for Babesia, Bartonella, Lymes Borrelia Burgdorferi and Mycoplasmas through IGENEX.  

[Deniseannette]

Thank you all for your comments. I really appreciate it. It's really nice to feel that I have people who care and believe me when i say I'm ill.  I'm still sick and still uncertain. I was tested for Lymes disease at a local walk in clinic back in June. The test came back negative.

However, I did tested for H Pylori early august. I don't know if you know what it is but, its a bacteria that is in the stomach. You usually get it from contaminated food or water. It can cause all sorts of stomach issues and apparently other non-digestive issues too. I actually tested postitive for it back in April (when first started to feel ill). But for some odd reason I was not told until August. It still irritates me to this day that I wasnt told sooner. The doctor who diagnosed me, was very surprised herself.

Anyways, I was given a 7 day concoction of strong antibiotics. Still don't feel any better. I will admit, I was not dilligent with taking them. You are suppose to take them every 12 hours (sometimes I didnt) and I did skip one day. I have problems swallowing even tylenol. I'm going to get retested for the bacteria today or on Monday.

As of right now I experience

Low grade fever (off and on)
Sinus problems (liquid sensation in head, clogged ears, pressures, nasal pain)
Tingling of legs and face
Constipation
Hemmroids (too much info..i know)
Joint and muscle pain
Dizziness
Eye floaters
Random twitching/buzzing
Anxiety (especially at night)
Headaches
Shortness of breath
Insomnia
White tongue
Bad breath (my goodness!)

I went to my GP on Wednesday and she told me that all of my stomach issues are related to my H Pylori. Everything else is unrelated. She is not the first doctor to tell me this. However, i did research on the web and read some of people's symptoms. People who have actually suffered with it. Apparently, some people don't even have stomach problems and get diagnosed.  I'm getting told two different things, it's just so confusing and stressful.

I'm pretty sure that whatever I have, I still have it. I more than likely i will have to go back on the meds and probably for a longer time. Not looking foreward to it. But if it will give me my life back, I'm up for it.

Thanks again for all of your comments. I will let you know my results.

[susan51279]

No, I just hate to see her being so scared without knowing what she is dealing with.  Like I said, it may be something easily treated.  

[brandycolwell]

IM SORRY THAT WAS MEANT FOR SUSAN..

[brandycolwell]

why do you say that? do you think what she has is ALS?

[susan51279]

What you need to do right away is make an appt with a neurologist who specializes in MD and/or ALS.  We go to the clinic at UT Southwestern and clinics like that are all over the country.  They will run tests to rule out ALS as that is the only way it can be diagnosed.  You owe it to yourself so that you can find out what it is and deal with it.  It may be something treatable!  Good luck to you and try to stay calm in the meantime!

[ewford]

  I have not seen you on the Lymes forum, your symptoms SCREAM Lymes and coinfection. Please repost on the Lymes forum and help will be on the way

[ewford]

repost on the Lymes page and you will get all the help there.  If you cant find the forum, click on my name and look at where I have posted.  

  Do you have bad gas?  gluten and sugar, milk intolerances?  Do you have some days where you feel "ok" but then a few where you feel like total crap?  The crappy days are when the cytokines are being released into your bloodstream causing you to feel crappy.

[brandycolwell]

i need your help! i am not diagnosed for over 8 months, and i have the same symptoms. i started taking Mg, the twitches have stopped!! almost completely. i have low b12, low folic, low vitamin D, the bottom of my feet burn for no reason at all.. my upper legs and arms shake when i lift them unsupported. does this sound right??

[ewford]

You have Lymes disease and coinfections of bartonella and babesia.  possible infectious Mycoplasma as well.  Your symptoms are a dead ringer for mine and i went missdiagnosed for 14 months.  I even ahd 3 labcorp lyme tests, all 3 CDC negative.  I had specialized testing that looks for the DNA as opposed to antibodies through IGENEX Labs and tested POS for Lyme Borrelia Burgdeferi, bartonella and Babesia.

  Air "hunger" is a sure sign of Babesia as it is a Malaria like bug that gets into your red blood cells and consequently they cannot carry enough oxygen.  Its a chronic intracellular bacterial infection.  If you have a Hematologist look at your blood you will see things moving around inside your red blood cells.  Go to youtube and type in Babesia or Babesiosis.

  bartonella causes eye pain, ankles hurting, feet hurting, chronic headaches (unlike ever before felt), sleeplessness,

  The Lymes Borrelia goes everywhere and causes all sorts of symptoms, including your brain.  Hence cognative issues.  The fasticulations (involuntary muscle movement) are caused by Mg defeciency that Lyme creates.  You will have low B12 and Vit D.

  You need to repost this in the Lymes section, you will get help there.

[brandycolwell]

i would surely agree with bigsissie- i also have hashimotos disease and have some VERY strange symptoms, also, have them check b12, folic, magnesium, electrolytes, one small thing being off can cause so many problems. your symptoms sound a lot like mine, and i think it would be very unlikely that we have ALS. or there could possibly be some compression due to your spine, ya know, pressing on the nerves..did they mri it?? best of health to you :)

[bushbum]

your symptoms could be due to many things.. but nothing sounds specifucally indicative of AMS to me... Good luck

[bigsissie]

Here is a check list that may help you. http://www.thyroid-info.com/articles/autoimmune-checklist.htm  You may need blood work done. I have back problems and was diagnosed in February with Hashimoto's. A lot of the problems I have I was thinking were caused by other things but it was my thyroid. Hope this list helps and that you get the help you need. If you have any more questions please feel free to message me. Best wishes.

Sissie