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wheeler641

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I have posted before and most of you have assured me my symptoms do not point to als. I just have a few more questions and then I will go away. I suffer from muscle cramps in my legs at night, I tried tonic water and it does help a little, I also have widespread muscle twitching. I am a diabetic, I have some nueropathy in my toes, i can move my toes, but sometimes they are numb. I ache all over when I first get up in the morning my knees are very stiff, for the last few days I have been getting nightsweats and wake up soaking wet, I feel weak, even though I can still lift things, exercise, do yard work, etc. My doctor has been runiing test for about a year to come up with a diagnosis, the only test that comes back high is a sed rate of 96 which I was told was caused by some kind of imflammation, He finally told me he thinks I have poly-something rhuematica and put me on prednisone 10mg a day, since I started taking it I actually feel worse. I also had a test for lyme that came back positive about a year ago and took doxycycline for 2 months. I just do not know what to make of my symptoms, I seem to be getting worse, feel horrible in the morning, but as the days go on I feel better. I do not want to dwell on als, I am just hoping that someone on this forum has had symptoms like mine and maybe could give me some answers. I do not even beleive my doc thinks I have this rhuematica thing, but just does not know what I have. He told me before it is probably an immune disorder of some kind. Do you think I should see another doctor for a second opinion. thanks to all who reply I am just really confused, also what is babinskys? thanks
 

wheeler641

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no, I have not but I did have an emg about 3 years ago, it was normal. I am just so tired of looking for answers, my body aches so bad in the morning i have to sit at the computer for about an hour until the pains med kick in. I have all the symptoms of rheumatoid arthritis but my ana is negative. Wondering if it could be the lyme again, I have seen so many doctors that it is just exhausting me, currently I see my regular md about every 6 weeks, also see an endocronologist and a pain doctor. Outside of the cramps which is muscular, the pain seems to originating deep in my bones(also have been tested for multiple myloma and cancer markers(neg) I am not a hypochondriac and just want to feel better and be able to function. I was hoping that maybe someone on this forum might of had similiar symptoms. Also I ger small electric shock feelings in my toes but that is probably from the neuropathy caused by undiagnosed type 2 diabetes. Any suggestions anyone?
 

jennibf

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What would we suggest? You need a different type of doctor or to change doctors apparently. If I hurt like that in the morning I would be making an appointment to get some help. We can't write prescriptions, cannot give a diagnosis, prognosis or anything. So my suggestion would be make an appointment. I'm not trying to be rude, just practical.

Let us know how it goes.
 

planningguy

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Wheeler641,

Your case just sounds really complicated, and you seem to have more than one thing going on at the same time compounding things. You might want to look into an academic medical center where doctors tend to be more up on their research, accustomed to a multi-specialty approach, and more apt to enjoy medical puzzles.

Babinski's sign is an abnormal reflex in adult's (but not in infants whose nervous system is still developing) where if the sole of the foot is stroked the toes spread and point upward, as opposed to curling downward. It is an indication of upper motor neuron damage.

Caveat with this explanation: testing for it requires medical training. I hate to say it like that, but a lot of people hear about it and try to self check (repentent guilty party here). It doesn't work that way, and you'll only stress yourself out.

Take care,

Robert
 

laurel

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Symptoms

I have posted before and most of you have assured me my symptoms do not point to als. I just have a few more questions and then I will go away. I suffer from muscle cramps in my legs at night, I tried tonic water and it does help a little, I also have widespread muscle twitching. I am a diabetic, I have some nueropathy in my toes, i can move my toes, but sometimes they are numb. I ache all over when I first get up in the morning my knees are very stiff, for the last few days I have been getting nightsweats and wake up soaking wet, I feel weak, even though I can still lift things, exercise, do yard work, etc. My doctor has been runiing test for about a year to come up with a diagnosis, the only test that comes back high is a sed rate of 96 which I was told was caused by some kind of imflammation, He finally told me he thinks I have poly-something rhuematica and put me on prednisone 10mg a day, since I started taking it I actually feel worse. I also had a test for lyme that came back positive about a year ago and took doxycycline for 2 months. I just do not know what to make of my symptoms, I seem to be getting worse, feel horrible in the morning, but as the days go on I feel better. I do not want to dwell on als, I am just hoping that someone on this forum has had symptoms like mine and maybe could give me some answers. I do not even beleive my doc thinks I have this rhuematica thing, but just does not know what I have. He told me before it is probably an immune disorder of some kind. Do you think I should see another doctor for a second opinion. thanks to all who reply I am just really confused, also what is babinskys? thanks
Hi,
Maybe your doctor was talking about Polyarteritis Nodosa which is autoimmune. I think high sed rates are indicative of Polyarteritis Nodosa--as well as some of your other symptoms. Sounds like you should be seeing a rheumatologist. Good luck.
Laurel
 

wheeler641

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I found the piece of paper that he gave me and it it polymyalgia rheumatica, I looked it up and it looks loke a catch all disease you are labeled with whem thet can'y figure out what else may be wrong, I am going for some more tests an friday to rule out some vitamin difiecencies will post ehen I go back to doctor and get results. My last tests showed me low in potassium, magnesium and vitamin d. The vitamin d was very low only about 5, I take one 50,000 pill a week, have been taking for 2 months, do not notice a difference, he is also doing other tests. I will ask to see a nuerologist, hate to do it, they only insurance I have is medicare and I have to pay 20% out of pocket and all thses doctor visits are breaking me. I like my m.d. a lot, I have been seeing him for about 15 years and trust his judgement. I appreciate everyone who took the time to respond to my posts even though my symptoms do not point to als. googling my symptoms brought me here and was lurking for about 3 weeks before posting. The thing that comes back most when I google my symtoms however is lyme, mabe I should be seeing a lyme specialist, does lyme ever really go away? or do you have flare-ups the rest of your life? thanks for reading and responding , you guys are wonderful. I asked the same questions on a few more forums and they are just sitting there in cyber-space. You are a great group of people to take the time, with your own problems to answer questions from someone whose symptoms are different to say the least.
 

lydia

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I want to echo Wheeler's comments about how wonderful the people are on this forum who take the time to comment. I read/participate on two other forums and they are nothing compared to this with respect to the level of participation and the quality of responses. Wheeler I look forward to hearing details of your future visits with a rheumy if that is what you end up doing. Perhaps save your money on the neurologist?
Lydia
 

wheeler641

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I am scheduled for some labs on friday and have I doctors appointment for monday. I no longer beleive I have als mainly because of the constant pain I am in and from what I read that is not a symptom of als. Still twitching like crazy, no weakness. I hope you guys do not mind me hanging around for awhile or until I am diagnosed, I have looked into other forums and some are too clinical to me, other not as supportive as you all are. Hopefully when and if I get diagnosed maybe my experience might help someone else. If I do not get any answers on Monday I am going to ask to see a lyme specialist or find one myself. Took antibiotics for 2 months for it because my titer were high whatever that means? having alot of symptoms of lyme, muscle aches, night sweats twitching, etc. Does anyone know if lyme ever goes away or does it just lay dormant for awhile only to strike again. I am going persue this with a vengeance and my doc is just going to have to put up with me. I am going to get a little more aggressive in my approach to finding answers with or without my doctors help.
 

Al

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Feel free to hang around Wheeler. Most of us are interested in how things turn out.

AL.
 

wheeler641

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hi, just got back from the docs and am more comfused than ever, mentioned that I still had twitching and muscle cramps in legs, told me not sure what is was but was not als, as I have no weakness, did a few things, checked my reflexes which were normal, had me walk on my heels and toes, everyhing fne. got my labs back my blood sugar was still a little high 111 fasting but he did not seem to concerned over it. Magnesium calcium still a little low, so is vitamin d, have been taking supplements and a script for vitamin D for a megadose once a week. Now the only problem my sed rate keeps increasing even though I am on prednisone, last time (about 6 weeks ago it was around 90, now it is 135, he wanted to put me on a higher dose of prednisone, I refused, my hair is already breaking off and it seems the twitching increases when I take a dose, plus it gives me a horrendous appetite which cannot be good if you have Diabetes. I have an appointment to see a rheumy in couple of weeks. It is getting increasingly harder to function when every joint in your body feels like it is inflamed and hurts to move. He is sticking by his diagnosed of polymyalgia rhuematica, but what I want to know is why I seem to be getting worse not better. I am not obsessing about als, I am pretty sure I don't have it, but maybe when they can figure out what is the matter with me it might help someone else that has the same thing going on. Also I asked the question before, anyone with some medical knowledge? Wright? can lyme just lay dormant and than reappear? do you ever really get rid of it? Also what else could be causing my sed rate to be out of control, I know it a sign of imflammation , but of what my entire body? I have been tested for RA, lupus, even syphills Any insight anyone? Also I asked about a nuerologist , he told me I don't need one. thanks in advance for anyone that can help answer my questions, margaret I am just so confused:-?
 

Al

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Well, that is interesting. I don't know what to make of it, but it is interesting. Let us know when you find out more.

AL.
 

wheeler641

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I am going to try to bump up my appointment with the rhuemy today, woke up in a lot of pain, kness ache so bad I can hardly walk, had to dit down at the computer with my coffee and a vicodin for a half an hour. Has anyone on this forum had a sed rate of over 130? Do not want to increase the prednisone I am having a lot of side effects from it. I am tired of relying on narcotics to get me through the day. Forgot to mention it in my last post my Md also put me on lyrica, took it once before, did not like the way it made me feel, felt like alice in wonderland on it, while driving I had to keep reminding myself red means stop, green means go. He gave me a lower dose this time, I will try it on a day I do not have to drive, thanks for letting me hang out here until I have a DX. Right now from my symptoms, I am betting on lyme. Also forgot to mention last night I got twitches in my butt, really strange feeling, first time that happenned:)
 

wheeler641

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cannot help but notice, no one is replying to my posts:-( I just do not know where else to turn while awaiting a diagnosed. I notice a lot of people on here are undiagnosed so I was hoping someone might have some comparable symptoms with me. Do not know where else to go, I have checked out the bfs forums and if twitching was my only problem, I would jog around the block, twitching and jerking all the way. Do not really feel that is the forum for me, cause even though they are annoying as hell they are not my main concern. Also checked out the pain forums but it seems most people on there are more concerned on much narcotics and which ones will make them"high" I am looking to get off my pain meds, not to be put in a stuper. I know most of you are going through a lot and worrying yourself about your own symptoms i am just looking for a little support until I am diagnosed. I know there are no doctors here, I am not looking for a diagnosed from any of you,just a little input, thanks
 

rose

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Margaret,

I'm sorry there has not been a lot in input to your thread. I think its mostly due to the timing with the holiday's and the forum also being ofline for a number of hours.

Re: the prednisone. I understand why you don't want to increase the dose, but the trouble with taking only a little, is that although a smaller dose is good to maintain someone that has a condition that has been brought under control, its not enough to stop the progress even if the illness is caused by an inflammatory cause.

I can't take the time to re-post all of what I've written here in the past, about my experience with it, but rest assured I'm intimately familiar with prednisone, and its awful side effects. The thing is, prednisone gets a bad rap, but its probably saved more lives over the years than a lot of other medications combined.

I hope it helps you to realize that you are far from alone in not receiving a timely diagnosis or explanation for your symptoms. Take heart in the fact that the best doctors are intrigued by the more "interesting" cases, the farther you are from classic textbook, the more they will want to find what is wrong. Sometimes it takes going to another for a second (third, fourth) opinion, to have a fresh take on it.

Good luck to you, and know that you've not been left out from caring on here, its just the luck of when you post sometimes. (I'll check back on you when I am able) ((Hugs))!
 
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