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Concerned Me

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Dec 19, 2009
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Learn about ALS
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nj
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south jersey
my husband has been having crazy symptoms since september .... seems to think they point to als. has been to rheumatologist, joint surgeon, back surgeon who told him to see a neuro. The back dr. had him do a test where he needs to walk on his heels and he could not do it on the hard floor because there was much pain in his heels. He can do it better on carpet. He has weird pain in odd spots and he said that when he feels with his hand those spots it feels like the tissue or muscle is changed or gravely in that area.... this is long but please read and lmk what you think... he got frustrated about a month ago and stopped recording.... any input is so welcomed and appreciated:)
Around September 10th 2009, I started experiencing achy right shoulder. This lasted for about 5 days and subsided however my right hip then started aching. (Also during this time, I got my bi-yearly sinus infection and took a 14 day course of Augmenten) The hip ached much more severely than the shoulder and then within 2 days my right knee was also hurting badly. I immediately went to a family Chiropractor that my parents had success with in the past. After 2 treatments, my hip and knee were feeling 80% better. (Not sure if this is important to note or not, but during this same time I ran out of a medicine that I take daily. That medicine is Pulmicort Respules .25mg. These were prescribed to me by my sinus surgeon and are taken via a NASAL irrigation mixed with a saline solution. I was out of this medicine for 3-4 days. I also take a generic Claritin daily.) My hip continued to bother me a bit but most of my pain/irritation switched to an area on the back of my thigh. The rear of my thigh seems to worsen when sitting for an extended time such as at my work desk or car drive. During this time our family went to an amusement park and expected to sit on a bench all day, but walking around did not seem to affect any area until near the end of the day. I took Advil throughout the day and that may have been what made the difference although I don’t walk for extended periods so I don’t know what it would have been like without Advil. My hip continues to be sore, but is sorer to the touch and when pants pull on it. Also, my hip then started popping when doing anything like putting my pants on. While my hip still pops it is the pain behind my thigh from my rear to my knee that is most painful. Also, during this time at co-worker asked me what the rash/hive was on my neck. Looking in the mirror I saw a large defined oval red area on my left neck that was about 5”x2”. It lasted about an hour and did not itch. Then about a week later, my left knee started to hurt badly. It would pop in both directions when lying down. Twice it was warm to the touch, but mostly the top part of the knee is very sore and has a burning/numb sensation. I went to a primary care physician on October 9th and she ran blood work which all came back as normal. She said my Vitamin D is a little low and that she is still awaiting results on a Lyme test. These are my symptoms as of October 13th. Here are a few side notes that may apply. Each day I will get one or two spots on my body (varies) that hurt to the touch. They may last ½ hour or all day but they are very painful… on the level of when I previously broke a bone degree of painful. About 3 months previous to the start of these symptoms, I noticed that when I tried to look at my cell phone I would have to move it away from my face in order for the letters to not be blurry. I went to the optician for my yearly exam. She said that I am now 41 years old and that I will need reading glasses. I knew that day would come, but it really felt like it occurred overnight. It has not worsened or improved. Also, near the beginning of September I started getting pains in the upper part of my abdomen directly below my ribs near my sternum. The pain is on both the left and right side about 6 inches below my nipples. They feel like pains that I had before I had my gall bladder removed years ago and they occur several times a week. I have also noticed that I wake up every morning with one or both of my hands asleep. This also made me notice that my legs fall asleep very easily. One of the stranger things occurred on October 12th. I was driving for about 10 mins and my left ring finger became numb between the hand and first joint. It took about 5 mins after I stopped driving for it to return to normal, but when I returned to the vehicle, within 5 mins of driving it was numb again. I noticed that it seemed to be related to having my arm lifted to place on the top center of the steering wheel. If I put it down the feeling would return. I also want to note that two years ago I broke above my right ankle from what I would consider a fall that should not have broken a bone. Other than the above, I have a general feeling of being sore and bruised.

• Pain in shoulder – right side
• Pain in hip – right side
• Pain in knee – right side
• Terrible pain in the back of the leg from rear to thigh – right side
• Pains in abdomen – bi lateral

On October 9th, I went to see a doctor at Jefferson Internal medicine. She did blood work including Lymes which all came back negative. She did note that my vitamin D was a little low, so in turn I am now taking vitamin D supplements. She then referred me to a rheumatologist (earliest appointment in November).

On October 16th, I went to dermatologist for removal of suspicion moles. I have been going to him for 20 years and he removes a couple moles a year. I told him about my symptoms, which at that point were mostly pain in knees and hip, but also one particular spot on the backside of my thigh. When touching that spot with my finger, it feels physically different and has a very stinging type of pain. When feeling with my finger it feels like a squishy imperfection. The doctor could not feel it which is not surprising considering I can only get to the exact spot based on the feeling of pain that accompanies it. The dermatologist took blood to send to a lab that specializes in looking very closely to blood work when these type of symptoms are present. He started me on Doryx(which was started on October 20th) as a precaution. The Lyme portion came back negative. He also saw a strange pimple on one of my left toes and in turn biopsied it. The results came back that it was fungus and a bit of staff.

As of October 22nd, if I take Ibuprofen around the clock, my knee and hip pain is tolerable. My knee continues to clunk when bent in both directions and has a general feeling of soreness and numbness at the part closest to my thigh. The pain and numbness in my right knee comes and goes. My right hip continues to clunk and is very sensitive to the touch to the point of where I sleep with my pant pulled down to my thighs. I also have situations where my left hand falls asleep. It seems to occur when holding my arm up or leaning on it. As a side note, when I was 16, I fell and damaged my ulner nerve. It has been very sensitive ever since then and the slightest touch of the nerve near my elbow sends and intense funny bone feeling and makes my pinky finger numb for about 5 minutes. My stools are also loose and marbled, however the looseness is not uncommon for me as this happens when I am on the verge of getting a sinus infection and when not eating healthily. Both are the case as of late. Also, I have had an intense burning feeling accompanied by cramping in my abdomen.(both symptoms very abnormal for me) and the small spot on the back of my right thigh continues to be very sore and tingly.

As of October 26th, I still take Ibuprofen around the clock to keep the pain tolerable. Over the weekend I was on my feet more than normal. I expected increased soreness and pain; however I found that the knee and hip pain/soreness decreased slightly during that time. At one point I was even running and felt no pain. I have also noticed that every other bowel movement seems to have dark specks that are small like ants and then one or two eraser head size black dots. Also, there are times where my stomach feels very hard and has a very intense burning feeling. It seems like if I eat almost anything(ex-2 oreos and milk) that afterwards my stomach is very crampy.

On the evening of October 26th, I missed a dose of Ibuprofen. By the time I remembered to take it, there was not enough time left to squeeze in another dose before bed. When I awoke the next day, the severe burning in the upper part of my right knee was very intense. The only way I can describe the feeling is that it feels like a deep sunburn. Also, my right knee now clunks/pops like my left.

Went back to my dermatologist on October 27th. He gave me a prescription for foot fungus and said the Immulab tests still did not come back. He also told me to stop taking the Doryx. Today, I also noticed that there is a lump near my left elbow area(think lymph node) that cannot be felt in the right elbow area.

October 28th – I woke up with my hands lying across my chest. Three fingers on each hand were asleep, but woke up as soon as I move my hands. Also, the night before while using the laptop computer in bed, my left elbow was very painful and continued to be in the morning.

November 1st – After lying in bed with a stiff neck all day, I got out of bed and my left knee had a very defined red area that looked like sunburn. It was very slightly warm.

November 2nd – I woke up in the morning sleeping on my left side with a VERY painful left shoulder. Other than that, my knees are what are bothering me the most, especially my left knee. As long as I wear jeans instead of elastic or tie waist, it appears my hip hurts minimally. The back of my leg still hurts from time and is always sensitive to touch. I have not been taking Ibuprofen around the clock due to my stomach being upset. I take Tylenol occasionally. Most of my stomach upset has stopped, but my stools are still very loose. A few times today I seemed to get dizzy when looking down.

November 3rd – I noticed last night and this morning that I feel like I am wheezing a bit.

As I talk to family members and think back, I also am remembering symptoms that I have no idea if they are related or not. One was extreme fatigue. I was/am getting more sleep than ever in my life, however during the mid part of the day, I feel beat. Not necessarily sleepy, just fatigued. Additionally, there were 3 occasions where I was walking and my legs all of a sudden felt extremely fatigued and burned. It was a quick overwhelming feeling that was so intense I could not take another step. It passed in about a minute. Finally, while I have had these throughout my life, I have had more frequent foot cramps(the arch) and more muscle twitches(arms and legs) than ever.
 
also wanted to note that he may seem a bit weak when lifting things.
 
Concerned,

I have no medical training whatsoever, which is typical for forum members in general. I think that it is in your, and your husband's best interest to have actual (rather than virtual) interaction with qualified medical caregivers.

Stick with your rheumatologist, or whatever specialty your gp thinks can help you the most. From what you describe, much of your problems are inflammatory in nature, which would point to autoimmune, or some sort of infection.

If you will take the time to read closely the very top of this forum page, there is a "Sticky" with requirements for an ALS diagnosis. You will note that nothing you describe is even mentioned for symptoms for this. The #1 symptom is weakness, manifested as the inability to do something that one could do previously in normal everyday life.

You noted that your husband was advised to see a neurologist. Did he in fact go to one?

The best bet for both of you is to deal with doctors who not only have the training and experience to evaluate you, but can actually do this (evaluate you) because you're there, in their presence for observation and exam.

ALS is an extremely rare disease, it is diagnosed by ruling all other possible causes out.

good luck to the both of you.
 
thanks rose, he was just advised yesterday to see neuro and goes on 1/20 - he cnnot do things he previously could because he does not feel well enough and has too much pain doing it and may seem weaker when lifting things. i noticed that when we moved our coffee table he seemed to think it was very heavy and i did not have a problem with it... not typical for us. whenever he searches his symptoms this is what comes up. he is scheduled for the neuro but the waiting is very hard as i am sure you understand. thanks for your reply and wishing you well.
 
I don't know how you ended up on an ALS forum. As Rose said, the symptoms point away from ALS.

Seeing a good doctor is the only way to find out what is wrong.

Good Luck.
 
Doesn't sound one bit like ALS. But, I'm no doc.
 
I have done quite a bit of research on ALS and it doesn't mention pain as a huge factor. Cramping and twitches along with moderate pain from exertion maybe but not to the degree of which you describe. Follow up with the neurologist but rest assured it seems very very unlikely. Good Luck....
 
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