My husband is 28 now and hasn't had it easy. At 19 he was diagnosed with Acromegaly/Gigantism due to a pituitary tumor. For those of you who don't know what this is, it is when you produce too much growth hormone and in his case during adolesence. Because of this he is just about 7ft tall. His organs are enlarged and so are his facial features, hands and feet. He's had a wide range of problems from needing back surgery for ruptured disks, to RSD or Chronic Pain Syndrome of the left arm, chest pains that occur with no relevance to his heart (he sees a cardiologist regularly), Optic Neuritis (he has had twice in 3 years with color vision loss and peripheral vision loss), tingling feelings in the arms and legs, a band like pain in hislegs usually one leg at a time, fatigue, joint stiffness and muscle spasms here and there. We recently saw a Neurologist and he tries to blame everything on the tumor. The tumor has been under control for many years now and we had an appointment with his Endocrinologist today and he said there is absoloutely no relation of his symptoms with the tumor. His GH test came back normal so we were thrilled with that but confused with everything else. We also so a Neuropthamologist today. He said that my husband was lucky that despite the 2 episodes of ON in the last 3 years, the optic nerve looked pretty good at this point in time. He said the usual cause is a demylinating disease but there weren't any signs of lesions at this time. Taking into consideration all of his symptoms, I am really worried that he may have MS. I have heard that you can have symptoms several years before there aer any lesions. Does it sound like his chances are high or am I just paranoid for no reason? All they can say is that we are doing the right thing and if anything comes up they will catch it but at this point in time he is experiencing neuropathic pain from a nonspecific point. Has anyone had this before? The Neurologist wouldn't even consider talking about MS, he just said there are no lesions so I am 99% sure it is not MS. Well I hate to say it but I'm not so sure and considering he's blaming a tumor that has been ruled out by the tumor doctor, I'm thinking he's not as smart as he thinks he is. Does anyone have any advice?
Welcome to the forum here. It sounds like he is pretty lucky to have you helping him figure this out. With his medical history I can see how doctors would want to attribute everything to the gigantism and the thyroid. If he were of normal stature they would probably be approaching his symptoms in a different manner.
I've read your sttatement three times and don't see any mention of an MRI - just the opthamologist declaring that there are no lesions. Am I getting that right? If that is the case, a good MRI would be the next step to look for lesions.
We have some very good health pages here - yellow icon on the upper right side - that talk about many of the points you mention, including having MS and not lesions that show on MRI examination.
Is he being given anything for the neuropathic pain? It has to be treated with drugs that are different from ordinary pain killers.
There was an excellent story on the news in the past few weeks about gigantism and the roots of this throid problem possibly being genetic and traced back to a small hamlet in the UK (I'm pretty sure that was the location). They were able to link by dna testing back to a few people here in the US that were related. It was a very interesting story and I learned a bit from it.
Please keep us posted and be sure to ask any quesitons you might have.
I'm so sorry, I completely forgot to mention that he did have an MRI a couple weeks ago. They said that they didn't see anything significant on the scan. He gets the MRI's done every year to track the tumor. He also had MRI's done of his neck and upper back to rule out spinal cord compression when they diagnosed the RSD of the left arm. Everything was so puzzling, all the strange neurolpathic pains as they call them. But the more I research MS, the more it makes sense to me. I really wouldn't be surprised if he does develope lesions in the future. They did blood work to check his thyroid and said it came back normal, GH, and IGF-1 were normal, he's not diabetic, no bleeding in the head, no additional tumors. Just low Testosterone which he iss being treated for. He's always had erectile dysfunction ever since I've known him but thetestosterone shots are helping. His vision is coming back like flickering. Each time it flickers he gets a little more back but no color vision at all in that eye. As far as treatment for the neuropathic pain, they prescribed Nortriptyline he has to slowly work his way up to 3 at bedtime. Then they will see how he is doing and add other medications as needed. We were really getting into taking supplements like naicin, fish oil, ginko, zinc, and other immune boosing ones out there. Since he has read that immune boostin supplements can increase symptoms and it appears he may be headed in the direction of having MS, we decided it best not to take those any more. At least until we know for sure, which sounds like it could take years. The Neurologist was supposed to be doing blood test to rule out inflamatory diseases but we haven't heard anything back yet. It makes life very stressful when you know something is wrong and no one can figure out what is causing it. I just keep telling him to hang in there and that we have eachother. I've helped him though every other problem and I'll be here to keep on helping. I go to all of his appointments with him because it is very hard for him to take it all in. I record everything that goes on for the doctors because he has a hard time remembering things. It can be very overwhelming for him. We have definitely been through a lot together. He tells me all of the time that I keep him alive, but I love him and I would do anything for him. Are there other MS-like disease that would cause all of this? Like you said, without the tumor they would be approacking his symptoms in a different manner. Sometimes I wish they would just pretend it wasn't there because it doesn't play a role at this point but they are just so stubborn. I'm not sure if we should see a MS specialist to see what their opinion is or just wait and see if something comes up on the next MRI or so. We are trying to be patient, maybe it will be easier once the Nortriptyline starts working. Only time will tell I guess.
Thanks for getting back to me, I really appreciate it.
I didn't see the story on the news. I've been so busy doing research and reading whatever material we can find that I haven't had time to watch TV lately. We just don't want to do anything that could potentially make his symptoms worse.
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