HI All, I'm new here.. I'm so lost confused & have no clue which way to turn. So tired of being treated like I'm a hypochondriac or that somehow I'm imagining myself ill so that I can receive the attention that somehow I'm not getting despite being sick. So if it wasn't getting me any attention and I could just think myself well then I THINK I WOULD! I'm fed up with the dr looking at me like I'm an idiot. Lack of medical insurance with the inability to get medicaid & personal health insurance, and the lack of income due to my husband being unemployed leaves me stammering through life in constant pain, feeling my head is in a cloud or daze. With no ability to think logically or rationalize anymore. I laid in bed the other night and I swear to you, it took me 10 minutes to subtract $85 from $377 dollars. I could NOT for the life of me figure out what it was. And lately When I wake up in the morning and finally get out of bed it takes me 2 or 3 minutes to walk from the bed to the door, which is only about 8 feet! It seems as tho I have forgotten how to walk over night. And if I get startled out of bed (for example baby wake up crying) I almost always smash into the wall because it's like I have no feet! I hope you don't mind but I'm going to post a copy of the post I just posted on another thread about what I've been through and going through. If you have anything to comment please give me your opinions because I'm so frustrated that I'm losing hope and with no hope I'm useless and no reason to be here. Thanks for reading this very very long message.
Evonne,
I'm curious to know if you have received an accurate diagnosis in the last 3 years since that post. If you get this please let me know. I completely understand what you're saying about feeling like a mental case and having drs who are now tired of listening and are at a loss. I have been dealing with some time of Auto-immune disorder for almost 2 years now. From the research I have done I have narrowed my symptoms down to some type of CNC auto-immune disorder but all of my symptoms are the same symptoms for several different disorders. I have been MISDIAGNOSED with Fibromyalgia, Rheumatoid Arthritis, Lupus, Raynaud's Phenomenon, and now back to Fibromyalgia because they can't find anything through lab testing to back up the previous diagnosis. I'm now being sent for MRI's to check for MS. MS, describes my symptoms more than anything else. Although tonight, when reading PD page most of my symptoms are also listed there and that's something we hadn't even researched.

My symptoms include: (but not limited to because there are other things that I haven't tied into it that could be related)
tremors almost nonstop, twitching in the muscles & nerves throughout my whole body including torso & face, Severe back neck & hip pain. Severe pain in my hands wrists legs & feet. My fingertips & toes turn ice cold & blue (most of the time under stress or for no reason at all) once I get cold I have a hard time warming up and vice versa when I get hot. I suffer from swelling throughout my body including my face & stomach but mostly in my hands legs and feet. When I bend my neck down I have shooting pains that go down my back like lightening. I suffer from orthostatic hypertension. (my blood pressure is typically high when untreated and higher when sitting up, when I stand my blood pressure drops suddenly & causes it to be difficult to treat my blood pressure. Because when my blood pressure is normal at sitting/rest position when I stand it's drops too low. When it's high at rest it drops to normal when standing. Catch 22) I suffer from memory problems, dizzy spells, vision problems (blurred & double vision that comes on randomly and leaves just as random), I have also been diagnosed as "BIPOLAR" due to the constant highs & lows in my mood swings day in and day out. The majority of that is from frustrations of my new found limitations! I have weakness in my muscles. I can't lift my babies very easily, at times can't lift my glass or fork very easily. It is very difficult to stand because my legs feel wobbly & shaky & very unstable. I feel as though they could give out from underneath me at any given time. I had reached an all time high last year in my weight at 348lbs, this is when my symptoms progressed to constant every single day and very severe. I thought losing weight would help these problems especially the wobbly legs... but if anything it has only gotten worse even after losing 70lbs so far. I have constant joint pain in my fingers because I spend a great deal of my time on the computer, as I'm in school & run an online swap shop. My wrists hurt almost always. Was told this was carpal tunnel syndrome many years ago recently told it wasn't carpal syndrome and a few months ago was told again that it is.. Did I mention that my memory SUCKS! oh and I have trouble computing and processing information. This part of what ever I suffer from came on after I had a fainting spell and ended up crashing head first into a wall when I leaned forward from the toilet to reach the toilet paper I had dropped when my hand gave out when grabbing it. This too is a symptom that seems to be getting worse, My grasping. I have a hard time grasping things lately. It's very difficult and I drop a lot of the things I am trying to pick up, either because my arms/hands get shaking too bad or I get a spasm which causes me to drop them. Last week I had an episode where I was typing and suddenly I couldn't lift the fingers on my right hand to reach to type the letters above the home row keys. Upon this happening I had a severe spasm in the top of my hand and when trying to see what was limiting my range of motion I discovered that I couldn't cross any of my fingers over another. It was absolutely impossible. This lasted for a couple hours, then subsided. It is very uncomfortable to sit still it is very difficult to move it. My ankles hurt constantly. I have tingling, numbness, & loss of sensations in all parts of my body. I have had random onset episodes where I couldn't tell the difference between rough, smooth, hot or cold. Often I feel like I'm wearing rubber gloves. I have severe pain when I stand especially after sitting, sitting, walking or riding in the vehicle for more than 20 minutes. Sometimes it feels like I'm dragging my legs behind me. When I wake up, I have to lay in bed for 15-20 minutes before I can even consider getting out of bed because if I don't I will hit the floor. It's almost as if I have no feet at all when I first wake up. They are numb cold & almost unusable. When I do stand up, I am very off balance, wobbly, my legs tremble & I have to stand for a minute or 2 before I am even able to move my feet to walk. It's almost like I have to consciously think and tell my feet to walk as if I had forgotten how. I run random low grade fevers for no reason. I have headaches sometimes severe & days at a time. I have twitching in my eyes & lips that are random and last just a few seconds at a time sometimes it happens on my cheeks also. On a really bad day I feel as if someone is hammering icepicks into my bones! My skin often feels like it's on fire from the inside. The lightening pains are some of the worst feelings. I get very dizzy in the shower. My hearing has also suffered. For some reason I don't hear as well as I used to. I often don't wake up with my 2 toddlers cry at night my husband has to get up with them. (thanking GOD that he's currently unemployed to some degree anyways!) This all started after I had my 2nd daughter, but was random. 2 months after my 2nd daughter was born I was pregnant again. I had several problems during my pregnancy that I attributed to the pregnancy but didn't subside once my 3rd daughter was born. About 2 weeks after she was born I started noticing some very strange things happening and suddenly I had no ability to stay awake. I would randomly drop off to sleep at any given point and I always seemed to be exhausted. (I attributed this at the time to being a new mother in post partum, again it didn't subside and she's now almost 2) I had problems with my epidurals during labor & delivery of both of the babies, in which I believe they messed up nerves in my back causing severe nerve damage that I am now experiencing. Which is sometimes the case found with MS, according to what I've read. I often get sick to my stomach, have difficulty swallowing, have chronic constipation, difficulty starting to pee and often feel like I didn't drain my bladder completely and more often than not all I do is trickle when I do pee. I am very forgetful all it takes is a split second distraction and I can't remember what I was doing only seconds before. Carrying on a conversation is difficult because I often lose my point in my sentence. I know there's things I'm leaving out but I can't remember them at this given time and this is plenty long enough as it is. Long story longer, my dr is tired of hearing me complain. He offers no answers or suggestions anymore, doesn't seem concerned when I find things alarming (such as when I couldn't lift my fingers suddenly) and I feel as though I'm now talking to a wall because all he seems to want to do is write me a prescription for pain medications, antidepressants, muscle relaxers, diuretics, B-12 injections & sleeping aids. I am not a pill popper & I refuse to take all these medications when he can't even tell me what is wrong with me. I am not going to mask the symptoms not even knowing why I have them in the first place. OH I forgot to mention my B12 is low and so is my Vitamin D. I forgot what my point in writing this extremely long message was but I guess I hope someone reads this and says OMG I KNOW WHAT SHE HAS! and not say OMG SHES CRAZY! She is such a hypochondriac. Which is what most of my family & my dr seems to think. OR at least that's the way everyone treats me. If anyone has anything to share please feel free to leave a message here and I'll check back or Please feel free to email me at *edit* And be sure to put in the subject box NEUROTALK so I won't accidentally delete it as spam. Thanks to anyone who read this far and I am praying to find some suggestions or answers! I'm tired of living this life most days and if it wasn't for a wonderful patient husband & my 3 beautiful children. I'D SO CHECK OUT! I SWEAR I'M NOT CRAZY! Tisha

Oh Harvey! what a mess! Im so sorry you are going thru any of this, and worse yet I am so sorry that someone, anyone doesnt believe you and then get on board with helping you sort thru the cob webs, and begin to get to why you are the way you are. As I tell folks all the time, even if I am a crazy nutball I dont deserve to be treated this way! I deserve answers, compassion, and direction. HELP ME! I feel like shouting at so many educated professionals.

Picking a disease that this sounds like is not something I am going to guess at, but I am going to ask you to call a MS center semi close to you. Please let them know that you cant pay for care, and if they accept medicare dollars they have to take in X# of indigent patients per year. You will have to fill out paperwork before you are seen so that they can qualify you before you are seen, but from then on until your financial situation changes you should be seen for free. Many of us use a MS center to be diagnosed or to completely rule it out and then use a local neuro if we need one.

I will tell you what I tell everyone else. there are more than 100 diseases that can mimic MS including lesions in the brain, twitches, shock sensations, Blood pressure issues and so on. Since you cannot fake a low or high BP that should clue your MD that you are not in control of this. You need a round of blood tests to rule out the easy things like vit def, lyme lupus, sjoghrens, porphyritic issues and the like. now if you cant afford any of this while waiting to be accepted as indigent, then there are things you can do to help yourself. #1 clean up your diet. Many find the Swank diet dramatically helps their sx and so does going gluten free. Add at least a multivitamin to your diet and be sure to get at least 200 units of vit D3 (not D6) into your diet. You said you have a new baby, if you are nursing be sure to get enough calcium in your diet (swank is against dairy) so you may need dark green leafy stuff or you may choose a to modify a diet to fit your needs.

Start using natural products for cleaning around the home. Many commercial cleaners contain neurotoxins and those us of that are sensitive react badly when exposed. Keep a journal! a daily journal to show when you feel worse, when you feel better. What makes you feel better (like rest or eating a light meal, or some exercise) and what makes you feel worse. (stress, lack of sleep, a meal filled with additives, MSG, gluten and so forth) its work! but its valuable work. it will really help short cut some of the work an MD has to do to help pin point what is going on with you.

Take good care of you no matter what else anyone else says. Please stop caring what others have in their mind. if you know in YOUR mind that something is wrong, keep working on finding out what. If others are attacking you for not feeling well, then I would suggest asking them to go home! the added stress of having them in your circle isnt helping. Let them know "i know you think I am just being lazy, but I am really struggling here! i would love it if you can be supportive of me till I find out what is wrong. If you cant be supportive, then please go home." MS is an invisible disease, and even with a dx in hand, many would say "but you look so good!" how can you be that sick, you look great! You drive into a handicap parking spot and others scream that "why are you in that spot!" they dont see you drag out of the store sweaty, and painful.

I wish you the best of luck. please let us know what you decide to do.

Tisha,

My heart goes out to you. I hear of this happening so often....so please know that you aren't alone. As if that will help. I know it seems like you're the only one going through it when it's you that's going through it.

I concur with all that Dejibo said. It's a long, frustrating road to a diagnosis. Whatever it is, MS or not, please know that you can come here and get acknowledgement and advice or just a hug. Just knowing others can relate is helpful.

You're in my prayers.

Hi Tisha

I am sorry that you are having such an awful time of it.

I am one of the lucky ones that got diagnosed straight away, but I have heard some stories on this forum that make me realise how lucky I was.

It all sounds like textbook stuff - I hope you get the answers you need soon.

Lyn

Hi Tisha! I am so sorry for what you are going through.

It really sucks to have so many things going on in your body.

I agree with everything that Dejibo said.

With a new baby and an unemployed husband, plus all your symptoms, it is very frustrating. Do. Not. Give. Up. Whatever you do, keep going. I've never heard of MS Centers. I went to two MS Specialists, who turned out to be oh so wrong for me.

Back in the early 1990s when I was diagnosed, I had finally found a doctor who took the time to go over all of my symptoms, one by one. He then asked which three are the most debilitating to you? He sent me to a neurologist, who actually yelled at me "no one can have this many symptoms". So, he sent me to another neurologist. The third he sent me to went over my clinical history, did an MRI of my brain and cervical spine, spotted two lesions; performed a lumbar puncture which produced bands; and gave me the diagnosis of MS.

You just have to somehow find a doctor who will sit down and listen to you. Be sure to keep a journal. In mine, I list my medications, doctor's visits (what my problems are, what the doc recommends), tests, etc. In other words, anything to do with my health.

I wish you all the best.

Adding to Dejibo's advice, which is excellent: Swank diet does not preclude dairy, but you must use non-fat. The symptom of not getting the BP correctly when you stand or sit is significant, showing...what? As Dej says, showing that you are not in control of this system; One more, it is not an easy diagnosis to get a porphyria dx. It does not come out automatically with first tests, except in a few cases. The loss of automatic control of the BP is sometimes a porphyria symptom, although I (who have porph) did not show this.

Adding my prayers and hugs to others'.

Thank you so much for listening. I know I wrote way too much I am just feeling like I"m trapped in a box and there's no way out. I have a very lean diet right now while I'm doing my best to lose weight. Have lost 70lbs this far in 7 months.

I know I'll find some answers. I have had a ton of labs done. Working on getting the MRI done now. waiting for an appt. I am going to at least call the MS center and see if they can at least advise me of where to get some help. I also thought about going to UAMS (University of Arkansas Medical Science) Hospital to the ER which is where a friend of mine told me she finally got her diagnosis after several years of being sent on a wild goose chase! Just tired of being miserable!

Thanks everyone who offered advice & suggestions and prayers I appreciate them all and it is very nice to have someone who can listen. Even if they don't know what to say.