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I really need some advice!!!! PLEASE
7 Replies
AngeS - August 21

Hi all,
I stumbled across this board/site today while trying to research my own medical mysteries...since I can't seem to get any of the dr.s to put out the time or effort in doing so.
In 2008 I was found on our couch not breathing and twitching..they classified it as a seizure because in my past I'd had seizures before. However, this was after I was put into an arm cast for 8 weeks due to what they said was most likely tendon damage (they really never could figure out what it was, but on the round protruding bone on my left wrist, just touching that spot would send me through the roof..I couldn't move it or lift with that hand either). I never linked that wrist issue with anything until today. They put me in the hospital because I was not coming out of the seizure as they had thought I would...I was very weak and in a lot of pain, which was not normal. I was transferred to another hospital where they started me on anti-seizure meds (one of which knocked me out COLD for 3 days straight!!). After a week of playing with meds they sent me home...I wasn't able to walk without help, was dizzy all the time, couldn't see right but they didn't know what else to do with me I think so they just sent me home and said she will adjust to the meds...give it time. So, a year later, I'm still in bed...having the same things go on and my pain would uncontrollable. I continued to have 'seizures' and the the anti seizures meds seemed to do nothing for them...so they kept increasing the dose which made everything else worse. I basically slept in pain for a year of my life. Finally, my family doc sat down and tried to figure this out for himself since these 'speciailist' weren't doing me any good. After running tests himself and doing some research, he felt there was a great possibility that I had Parkinsons Disease. The pain, trouble swallowing, trouble with my jaw aching, I would tremor/twitch a lot...there were a LOT of signs..so the final test was to try the meds and see what happened. He put me on Mirapex and that very same night...I got out of bed for the first time in a year!!!! He was convinced....it had to be PD. I continued to have problems with the 'seizures' but even those decreased. I still had down times where it didn't seem like anything helped, but...the Mirapex was doing something! Let me explain my 'seizures' though...because at this point, I'm wondering if they are really 'seizures' at all. Normally they progress in this manner: I am sitting and go limp, after about a minute I beging to twitch or my arms will move around in a very slow manner...this goes on for about 5 minutes and then I pretty much just pass out. Upon waking (which is usually about 20 minutes or so) I am very tired and will sleep for anywhere from 1-3 hours. Upon waking after that, my vision is very distorted for 2-3 days (it feels as though I don't have my glasses on but I do). I've had every test under the sun done and noone has ever been able to find a reason for my 'seizures', even directly following a 'seizure' they can't find anything. This is only leading me to believe maybe what is happening isn't a 'seizure' at all!!!!! I'm seeing a neurologist now who has basically told me that if I don't go back on the anti-seizure meds he will not see me anymore. Problem is...he also said, he would rather see me asleep all day then take the chance of having another seizure. Ok...I understand that but I have 4 kids, I'm a single mom and I'm taking classes online as well...I can't be asleep all the time! I refuse to go back to bed and miss another year of my kids lives! I tried to explain to him that when I was on the Mirapex I actually did better, he said there is no way that could be...that Mirapex isn't going to control 'seizures'! Ok, but isn't it possible that maybe they aren't?! I'm REALLY frustrated with this doc right now...it's take these meds or leave and that is irritating me to NO end!
Now, on top of all this, I have pain that is progressing quickly lately! It mostly concentrates on my left side but here recently, it's moving into my right side as well. On most days I can't even touch the top of my left foot as the pain is excrutiating. It feels as though someone is pulling the skin on the top of my left foot tight all the time or something, I guess similar to a contraction that never stops. This has been a constant now for at least 3 weeks and gets MUCH worse when I try to walk around. I can't wear shoes, just flip flops and even that is too much on it. The pain/cramping feeling used to only be in my left foot, leg and arm (and sometimes shoulder), however now, I feel it in my side/back and especially my neck (I even have a lump on my neck that the doc feels is tight muscle..like a knot I guess). On bad days though, this feeling has spread across my entire body...which it's NEVER done before.
Ok, now onto the part that confuses me the most....depending on my stress/anxiety level...I get tremors/shakes. My ex loves to cause me stress every chance he can...when he gets me stressed out...that is when I have what looks like Parkinsons symptoms. I stutter, I tremor (the bobbing around), my vision is affected and eventually, it leads to a 'seizure'! I have researched PD and find I do have a LOT of the symptoms, but when I got to your site this morning and started reading about the muscle twitching and things related to Fibro it got me wondering....could they have me all wrong? Could all this be fibro? I figured you all were a good place to start! I'm just hoping someone can make some sense of all the things that are going on and help lead me to a specialists that might be able to help!

Here is a list of my symptoms:
*Contraction/cramping type pain that mostly concentrates on my left side
*sore spots on the top of both feet (located near the little toe)...same spot on both feet
*sore spots on my wrists (the small protruding bone on the wrist)..same on both wrists
*sore spots on my elbows, again, same on both sides
*often have a feeling of heaviness throughout my body...like I have weights strapped to my body, epsecially bad when pain sets in
*weakeness, especially the left side
*inability to pick up small objects or hold on to things (when I try it tends to set off the tremors)
*vision issues (feeling as though I don't have my glasses on when I do)...almost like a foggy feeling
*the 'seizures' (I go limp, shake/tremor for about 5 minutes and them pass out)
*swallowing difficulties, trouble getting my mouth open to eat and jaw clicking
*dizziness
*very off balance at times (feeling as though I am walking a straight line when in fact I'm not)
*body temperature control is way off at times
*trouble moving around in bed (need to sleep with silky type pj's on or on silky/satin type sheets to help with this and to keep myself cool at night)
*head jerking
*grasping small items will bring on cramping feeling fast
*depression
*bladder control problems
....that's all I can think of at the moment. I think that's enough though!!!

If anyone has any input on this I'd love to hear it. I'm being faced with having to give up school, and my kids again to go back to bed for these meds that honestly, I don't think I need. Any advice you have would be great.
Thanks in advance to you all, may you all have a pain free day (yes, wishful thinking!)!!!!!
Ange

 

Fantod - August 21

AngeS - OMG, your story is absolutely heartbreaking. The seizures that you experience don't have anything to do with Fibromyalgia (FMS) but I suspect you already know that. It is possible that you have FMS as an underlying condition but a rheumotologist would have to rule that out. In your case, I don't believe that FMS is the primary problem.

You should go to the National Fibromyalgia Association website and find a fibro-friendly doctor in your area from their listings. Take copies of recent bloodwork and your medical records with you to save time and money.

You definitely have TMJ because of the jaw clicking and inability to open your mouth. TMJ can also cause veritgo. That would have to be addressed by a dentist that has experience with TMJ. You may need some dental restoration done on exisiting fillings that are interfering with your bite. And, you will need a bite splint made to let your jaw rest at night while you sleep. TMJ should not be ignored as it can cause a variety of problems that affect the head, neck, back, shoulders and arms. Violent headaches would be one example. I've had TMJ for years.

I did not see the word eplilepsy anywhere in your post but I assume that has also been throughly investigated. The neurologist that you are seeing sounds like a total ass. How anyone could tell a single mom with 4 kids that sleeping all the time is an acceptable quality of life is ridiculous to say the least. I understand the need the keep you safe from having seizures but there has to be a happy medium. Call your local hospital physician referral service and ask them for a recommendation to a neurologist with an interest in seizures and/or Parkinsons and hopefully they'll have someone else who has a more humane approach. I'd also google your metro area and the words seizures and Parkinsons and see what pops up.

Have you been tested for a vitamin D deficiency? This can be done with a simple bood test. Another possiblity would be gluten sensitivity. The most accurate result is obtained using a stool sample. Either of these issues will cause widespread pain. I's also seriously think about seeing an allergist to rule out other problems with food or environmental problems.

If you can find a functional medicine specialist (use google again and your metro area) where you live I'd make an appointment. Functional medicine specialists use conventional medicine and alternative medicine in tandem to treat patients. They are MDs with an interest in holistic medicine. They use an arsenal of tests that conventional doctors don't use. For example, I had a blood test done that took 6 weeks to get the results. It turns out that I am violently allergic to certain types of food colouring (one was in my shaving gel that I used everyday), some food preservatives and flax seed oil among other things. None of these were giving me overt symptoms like a rash but as soon as I eliminated them, the pain in my legs diminished (shaving gel),and I felt better. The report from that test was 30 pages long and those are just a few examples of what was found. If you can not find a functional medicine specialist - see a homeopathic doctor. Take your medical records with you.

I hope that my comments are helpful to you in some way. I'd like to commend your primary doctor for his efforts on your behalf. Doctors like that are few and far between these days. Good luck to you and God Bless.

 

Fantod - August 21

AngeS - I'm still thinking about your situation hours later. Do you use anything with an artifical sweetner? If so, get rid of it! It can cause some of the symptoms you are experiencing. If you need a sweetner, use something made with the nontoxic Stevia plant. You can find Sun Crystals or Truvia right next to the other sweetners in the grocery store.

Also, with regards to body temp control - have you had your hormones tested? They can cause a lot of problems in that area. And finally, an endocronologist might be another option to explore. Take care.

 

Fantod - August 22

AngeS - Has MS been ruled out? Take care.

 

axxie - August 23

AngieS, gees that neuro is stupid, and may I ask does he really hold a degree in neurology? I am so sorry you going through so much. I was thinking that you have more luck with your primary physician, go back to see him and tell him/her that you are not comfortable with the neuro you are seeing and tell him what he said to you. No where does it say that you as a patient can be abused, I presumed you have been tested for everything. No fibro, sorry dear, what I would do if I were you is go back to the primary physician and take a chance on him trying to rule out whatever you have. Sounds like you need a brake. I wish you luck, and I hope you find whatever ails you. Please stay with the board and lets us know how things go.

 

AngeS - August 24

Hi,
Thank you for all the help! Fantod...I was actually hoping there was a link between the 'seizures' and maybe FMS. Something that could explain those episodes and hopefully as something other than full blown seizures. Anything that would keep them from putting me on the seizure meds again. See I was on Mirapex a while back and it helped a LOT with my ability to move and with the pain I had even and it seemed to slow down the seizures as well, the neuro flat out told me that was IMPOSSIBLE...Mirapex had nothing to do with that. They have diagnosed me with Epilepsy, that was the first label they slapped on me, even though they have never been able to figure out WHY I have the seizures. As far as the Vitamin D deficiency and hormomes...my primary doc did check all that and it was fine and yes, MS was ruled out...my primary had a spinal tap done on me in 2009 to rule out MS and Lupus I believe. Now, on the artificial sweetners...I do perfer diet anything over regular. I will stay away from them for a bit and see if there is any change. Axxxie...I have an appt with my primary today to let him know what is going on. No idea what he can do for me though...he told me as much as he would LOVE to help me more it's just out of his league, but I know he won't just leave me to fend for myself either!
Thank you both for the advice! I will let you all know what my primary has to say this afternoon. Hopefully he will have some ideas on where to go next with all this. I just want someone to help me that cares about my quality of life as well...sleeping for 2 years of my life is unacceptable and shouldn't even be an option!

 

Fantod - August 24

Aspartame is an artificial sweetener used to sweeten foods without adding excess calories. People often eat or drink products with aspartame in an effort to maintain or lose weight. Aspartame is marketed under the names Equal and Nutrasweet. According to the Food and Drug Administration, aspartame may cause health concerns if consumed in excess. The FDA recommends that no more than 50 mg per kilogram of body weight be consumed each day. The average person would have to drink more than 19 cans of diet soda before reaching the maximum intake for the day. Thousands of individuals have reported adverse reactions to aspartame to the FDA, and research is ongoing.
.Neurological Symptoms
Aspartame poisoning may cause neurological symptoms such as headaches, migraines, dizziness, confusion and impaired memory function. It may also cause seizures and tremors, extreme sleepiness, limb numbness, facial pain and restless legs.
Metabolic and Endocrine Symptoms
Aspartame may affect a person's ability to control diabetes, and it may cause problems in people with hypoglycemia. It may also cause weight gain either rapidly or over time. This may be due in part to increased cravings for sugary foods. Some individuals may notice thinning of their hair, and women may notice worsening PMS symptoms and changes in their menstrual cycles.
Eye and Ear Symptoms
Aspartame overdose may result in vision problems and even blindness. Also, it may cause dry eyes, pain in the eyes, or bulging eyes.
People with aspartame poisoning may experience ringing in their ears. Also, some hearing may be lost and noise sensitivity may develop.
Other Physical Symptoms
Aspartame poisoning may result in irregular heartbeat, heart palpitations, shortness of breath and high blood pressure.
Ingesting too much aspartame may cause nausea, stomach pain, diarrhea, frequent urination, fluid retention, excessive thrust, frequent infections, itchy skin and hives.
Psychological Symptoms
Some people with aspartame poisoning have reported psychological problems such as depression and anxiety. It may lead to personality changes and increased aggression or irritability.
.

 

simpsponfamily4 - August 26

I had something like you are experiencing except for the passing out. I would loose complete control of my legs. I used to call them my dancing feet. I would try to stand and my legs decided what they wanted to do on their own. As the years have progressed my legs have just gotten weaker after each episode. That was diagnosed as Serotonin Syndrome. Know I still have the leg weakness but I also have pain all over constantly and have been diagnosed with Fibro. They are still trying out my meds. I have 4 yr old twins and like you refuse to be asleep there whole life. I am on lyrica, carb/levo, plus a muscle relaxer which I take 3x aday and I still have pain. The worst is the foot thing which started acouple weeks ago. As for your neurologist I would switch to a new one.

 

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