Does this sounds like a NeuroMuscular problem?

[mom2boys0214]

In 2009 I started to have bad headaches. If you were to split my head into quarters, the pain was on my left front side across forehead and behind eye. Neuro diagnosed migraines. Aprox 1 month later L eye lid droopy and was unable to open. I went to a Nerooptic: treated with medrol dose pack. surgery for inflammation of the lacrimal gland. Since then my eye twitches and mild ptosis. I also have these "migraines" several times per wk. I began to feel fatigue often with SOB. I just associated this with me not getting enough sleep, not eating healthy, just normal things that come as you get older. However, I am only 29. I started to have to take breaks/rest between chores/tasks. *I am 5'6 and weigh 146lbs I get light headed/double vision/see spots if I stand too long ex: in line at a store, or if I am in extreme heat outdoors or hot shower/bath. Palms sweaty/clamy often. If I push myself too far or stand in place for a length of time I get burning sensation and red cheeks. I get light headed, blurred vision and often arms get weak and "heavy" w/ overhead activities , ex. Hanging clothes, putting dishes away, etc. *In the last six months I feel as if my muscle weakness and fatigue has gotten progressively worse. I was having to take breaks just to blow dry my hair. I went to my PCP with these complaints, as I felt something was not right. She ran a CBC and basic metabolic panel which came back normal. She said I was not getting enough sleep and always on the go. I also have a good bit of physical and emotional demands as I have an Autistic child. I tried to slow down and get more sleep. However, I just kept getting weaker needing more breaks. I feel the best first thing in am, sometimes just sitting with eyes closed for 10-15min "recharge" for a short period of time. Three wks ago severe ptosis in L eye. The orig neuro optic was out of town. Therefore I had to see someone else. *He did not think ptosis caused by inflammation of lacrimal gland. He started me on augmentin as a precaution in case of infection. Two days later when the ptosis did not improve started 80mg of prednisone. Within three days I was so weak that I could barley walk. I could not get up from a laying position, stand from a seated position etc without the use of my arms. At times I was so weak that I could not even lift a gallon of milk. I started having problems talking, my speech sounded very low and slurred. The neuro optic did a CT scan of sinus and orbits and blood work. *CT was negative. The basic MG antibody test came back neg but positive ANA. One wk from starting the prednisone i was so weak i could not stand well unassisted, I was having bad dysarthria to where my speech was very slurred and hard to understand. *The neuro optic stated he still felt I had MG and was going into crisis. He sent me to the ER. The Neuro at the hospital said that it was not MG as if it is impossible to have MG without testing positive. (he did not do a MuSK Antibody test or a CT of my thymus) He immediately said he felt as it was somatization disorder. He was able to see both my son and my medical records as we use the same hospital for all specialist. I had also been taking Wellbutrin and adavan for anxiety. He consulted rheumatology for the positive ANA. They suspected Lupus or another autoimmune disorder and ran a bunch a blood panels. I had two MRIs of my head, one MRI of my leg (looking for muscle inflam) a xray of my chest, and a pulmonary function test. The MRIs were all neg except for leg Which noted slight increased hyperintense signal on axial stir sequences along the medial compartment although this may be secondary to artifact. It also noted cystic lesions within both axenia. (I do have endometriosis w/ removal of right ovary/tube in 2005). The pulmonary function test showed mild pulmonary restriction suggested by the decrease in residual volume. Max inspriatory pressure is normal. Max expiratory pressure is decreased. The blood levels that were abnormal are as follows
+ANA
+adolase
BUN 23
Alkaline Phosphate 54
Carbon Dioxide 22
WBC 23.56
Myelos 2
Segs 92%
lymphs 5%
aldolase 26.5
Trace of leukocytes in urine
These antibody were neg
AntiDS/DNA*
Anti Nuclear
AchR*
HIV/Hepatitis/Drug Neg
EMG showed carpal tunnel and chronic cervical C5/6 radiculopathy
RNS on bilateral nerves no consistant decremental or incremental responses. Increased insertional and abnormal spontaneoud activity present in mid level cervical paraspinals, deltoid, supraspinatus. RNS studies not conclusive in establishing a NMJ disorder. Repeat study at a later time may,should be considerd if clinical symptoms indicate.

Do you have any suggestions? I have an apt with new neuro at MDA clinic next week. I do not like that neuro at hospital just dismised me and was so quick to say it was stress/somatization. What could these test/symptoms be caused from? Could this all just be stress related? I do not feel my stress levels are that high. Yes, some mild anxiety, but who doesnt have that?*

 

[vickim]

It could be anything, but my first thought was lupus, and then ms. The droopy eyelids made me think some sort of muscular dystrophy. I would wait for the dr appt.

I hope you find out something soon. But sometimes it take a while because there is no clear cut test, it is all a process of elimination. Keep us posted.

 

[mom2boys0214]

Thank you! It is just really frustrating when you hear a Dr tell you that you are making all of this happen. That it is only being caused by stress. I know he was just the neuro at the hospital , but he is the head neuro of the hospital. I know everyone specializes in different things, and I am happy to be able to get into the MDA clinic so fast. I am hoping they will be able to help me. Or at least give me some sort of reassurance that they will find out whats wrong, and that it is not all in my head
How can I make abnormal blood, and emg results just from being stressed?

 

[mom2boys0214]

Just FYI I noticed your category is mito. My son, which is who the Dr is blaming all my stress being from, has a chromosomal abnormality (no I don't have it , I was checked when he was diagnosed) his is de novo which means it just happens spontaneous. Some of the genes affected ATP mostly, caused him to have mito also. I talked to his genetics Dr and he said there is no way this is the same thing. I actually had to call him to come over to the hospital from the clinic (he is at the same hospital) because my speech was so bad, and I guess they saw the family history of my son and "mental retardation" that they thought I was cognitive impared. He kept asking me who cared for me... I finally got so mad that I grabbed the pin out of his pocket and wrote on a paper that I was not cognitively impared, that this just happened, that I have no problems with my brain. I knew what I was thinking it was just hard for me to get the words out.....So I had to have my son"s genetics Dr come and tell him that I do not have any cognitive delayments, actually I am on the other end. He told the neuro how he uses me to give speeches to other doctors and or familiy members about mito from a parent perspective. UGHHHHHH they make me so mad.

 

[vickim]

I don't think you can change your blood with stress. Just hang in there until you see a dr. Hugs.

 

[ottawa girl]

Gosh, you have so much on your plate! I'd sure as heck be more than " anxious", if I were in your shoes.

From what I've read, nothing you describe sounds the least bit like ALS. Your EMG indicates carpal tunnel and/or a nerve impingement of some sort. Gotta wonder if that's not the root cause of your headaches and slurred speech.

Hopefully, the next appointment will give you answers. You sure deserve some! Would your PCP advocate on your behalf? I've seen some PCPs work miracles for their patients by pro-actively and doggedly spurring the specialists into action, rather than passively sending the conventional referral.

Good luck to you.

 

[mom2boys0214]

Has anyone had any similar symptoms and or problems with drs? Is this possibly a neuro muscular junction disorder like myasthenia gravis, lambert eaton, MS? Would possible cervical radiculopothy?

 

[wheeler641]

I have lupus and also aps (hughes syndrome, I had a positive ana and a sed rate of 95 before it was confirmed. Your symptoms sound somewhat like mine, during a lupus flare, it took almost 2 years to get a firm diagnosis. have you seen a rheumatologist? chances are if you have one anti-immune disease, you have another. During a flare I can sleep for hours on end, I also get very hoarse and slur my words, also pain all over, also with tingling , weakness. I am still being tested for other things, as I also have spinal stenosis which is causing problems also. If you have not seen a rheumy yet I think that should be your next step, take care and good luck, margaret

 

[mom2boys0214]

I saw a rheumatologist in the hospital as well. But the neuro was my primary dr. Rheumatologist orig said it sounds like lupus but she tested for the antibody and it came up negative
I just wish I could find some answers so I can start to feel better